Log

Grammar and punctuation rules do not apply here. Terms, abbreviations, and Scratch Scale or ss (I created this for an objective measure) are my own and are not used universally.

Machine Gun Scratching (mgs): vigorous, 1 or 2-handed, nonstop scratching of a body part–usually the scalp–for at least 5 seconds (like a puppy scratching fleas)

Scratch Scale (ss or scratch): This is my opinion of how much Brian scratches, not Brian’s rating of how itchy he feels. Based on a 15 minute time span, on a scale of 0 to 5 about how much is he scratching? (Time scratching is not necessarily continuous.)

0/5: No scratching or 1-3 short scratches in 15 minutes; able to focus and do seated activity on own OR, when sleeping, does not wake up/request assistance, ice pack, cold pack, etc.

1/5: scratching less than 5 minutes of the 15 minutes; able to do seated activity on own, OR, when sleeping, does not wake up/request assistance, ice pack, cold pack, etc.

2/5: scratching at least 5 minutes of the 15; not disruptive, able to do seated activities on own, OR, when sleeping, does not wake up/request assistance, ice pack, cold pack, etc.

3/5: scratching at least 6-10 minutes of the 15 minutes; able to do seated work but may need direction to focus and activity breaks; parent’s physical presence may be needed; can be disruptive, depending on location of scratching. OR, when sleeping, requests assistance to scratch, ice pack, cold pack, etc.

4/5: scratching for at least 10 of the 15 minutes; can’t focus on work without parent’s immediate physical presence and assist with scratching; disruptive

5/5: scratching the entire 15 minutes with anxiety; can’t focus on anything but the itch; parent’s immediate physical presence needed; disruptive

“+” indicates screaming, crying, thrashing, hysterics, vigorous-ness of scratching with 4/5 and 5/5 or periods of trance-like scratching, vigorous scratching, or in inability to stop with 3/5; or slow, constant movement of hands, like self-soothing with 1/5 and 2/5

“-” indicates length of time of scratching without excessive vigorous-ness, screaming, crying, and assorted hysteria

Sleep-Scratching: (kind of like sleep walking) This is my term for when Brian is scratching, whether lightly or furiously, while he is sleeping. His eyes are closed, he’s not awake, and he can strongly resist my attempts to keep his hands from scratching. 

PJ-Petroleum Jelly; ACV-Apple Cider Vinegar; DSS-Dead Sea Salt

—————————-Up until 8/10/14, 10 months into Topical Steroid Withdrawal (TSW,) this log documented Brian’s daily symptoms and activities during his withdrawal from topical steroids. At that time I stopped daily documentation (and logged only every few days or so) because he was doing great and there was not much different to report day to day.  On 11/30/14 and 14 months into TSW,  I started documenting more frequently because he started having more  disruptive itch, skin, and sleep issues again.——————————————————

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DAY 1189 Sunday January 8, 2017 39 months TSW! 1st Snow of the year! See blog post for update

Started using coconut oil daily, again, since December 2016 due to increased dry skin and colder weather. Scratching generally 1/5 to 2/5, but has had a few  3-/5 episodes with late nights and stressful situations. Not as good avoiding dairy later, drinking 1-2 cups daily. Slight increase in shedding, maybe 1/16 tsp, but not severe and obvious on sheets or skin; started changing sheets daily and shaking again. (Nice several month break, though!) Trying to do microsilk or ACV baths once or twice per week for infection control, but pretty slack about it. Thankfully we avoided getting eczema herpeticum like last december. Upper lip occasionally pink or chafed due to cold weather and some increased scratching of left anterior neck, but able to go sledding yesterday and today with friends with no other skin issues. 1/5-2/5 today. God is Great!

Day 1188 1/5/17–Pink, raised scratching on oil cubital fosse. 1+/5 ss. wore boot today to pitch batting practice

Day 1187 1/4/17— SS 2/5, used lemongrass balm on anterior and posterior knees at night. been going to bed too late–after 11pm which I believe is contributing to increased scratching,along with dry, cold air

Day 1186 1/3/17—  about 1/16 teaspoon measured shedding from sheet in morning. lemongrass balm to knees at night 1/5 SS

Day 1185 1/2/17: some pain in right great toe with basketball at school–no boot

Day 1184 1/1/17  New Year’s Day–after wearing for 3 weeks for fractured growth plate in base of distal phalanx of right great toe, boot comes off today!  3/5 SS

Day 1176  12/24/16 Christmas Eve: Apple Cider Vinegar (ACV) bath; 3-/5 ss

Day 1173 12/21/16: Wang ointment for itchy elbows BIL

Day 1172 12/20/16: erythematous, raised areas on neck, bilateral inner elbows–>Wang ointment for elbows

Day 1163 Sunday 12/11/16: went to Ortho on call 11am–> x-ray showed fractured growth plate base of distal phalanx on right big toe

Day 1162 Saturday 12/10/16: Ran Tacky Light Run 4+ miles; party; playing around and hurt toe around 8pm–limping and painful

Day 1158  12/6/16: SS 2+/5 to 3-/5; bumps on trunk, knees, some small erosions on back; slightly dry, cracked behind ears. need to restart ACV and microsilk tub

Day 1156  12/4/16: Colder Weather!! coconut oil; some visible shedding but not much; small scratches on back; dry skin but not like last year. it just feels dry but not obviously visibly dry with flaky whiteness

Day 1149 11/27/16: Microsilktub tonight

Day 1147 11/25/16: in SC, 3-/5 ss, no coconut oil (CO);did not take vitamins; finished antibiotics for dental surgery

Day 1145 and 46 no coconut oil

Day 1144 11/22/16: drove to SC for Thanksgiving; no obvious flaking, cut behind left ear. RESTART Coconut oil

Day 1143 11/21/16: back speckled, areas of scratching; no shower ; dental site painful

Day 1142  11/20/16: Skin starting to dry; dental pain; no shower

Day 1141  11/19/16: pain, ABX, no shower

FRIDAY Day 1140 11/18/16: 7 teeth extracted due to impacted teeth–missed school. no shower; ABX

Thursday Day 1139  11/17/16: start ABX for oral surgery tomorrow; shower

Saturday  November 12, 2016 (compare this to log entries dated 10/30/15- 11/15/2015)

Been so busy lately. Time’s flying by! Colder temperatures–30’s and 40’s in the morning, 60’s during the day. Headed to paintball birthday party today. Skin smooth with a few scratches on his shoulder blades; no measurable shedding left on sheets, change sheets every other day or two (and as needed) now instead of daily; still not using any moisturizer except for coconut oil on exposed face, ears, neck during baseball tournaments. Ankles and tops of feet are still beautiful like in summer. SS (scratch scale) 0/5-1/5 at its best and 2-/5 to 2/5 at its worst. Slightly more 2-/5 to 2/5 since weather has gotten colder and air drier.

Sleeping well through the night with 0/5 to 1/5 ss. Doing well in school –all A’s in advanced curriculum–and finished up with cross country and baseball this week.

Thankful for how far he’s come. Praise Lord Jesus for his comfort, help, and healing!

OCTOBER was a great month! smooth, soft skin dorm of feet, heels, and ankles look and feel smooth

Day 1117 10/26/16: Wore jeans without a problem to halloween/fall dance at school

Day 1115 10/25/16: shook sheets–visible shedding but very minimal. dryer skin, colder weather. 1/5 to 2-/5 ss

Days 1112-1121–dorsum of feet awesome! (these were always the recurrent troublesome areas)

Day 1094  10/3/16: shook sheets and 1 of 10 had very minimal visible shedding

Day 1093  10/2/16:  2+/5 SS; has a cold; hands and feet feel smooth but he says he may need to restart coconut oil (haven’t been needing it since summer

Day 1074  Tuesday September 13, 2016
Almost no visible shedding on shaken sheets in am. Several small open cuts on shoulder blades and where he picks on his elbows—treating with sovereign silver spray. Able to walk to the bus stop in time.

PM: Hot outside now. Had PE last class of the day–ran. He reports he was itchier last night than usual, attributing it to slight change in weather, but he’s also had more sugars and dairy than previous weeks when ss was lower. Encouraged to drink lots of fluids.

Day 1067  Tuesday September 6, 2016  and 35 Months TSW—-See Pictures dated 9/6/16 in the “Pictures THEN and NOW” tab
1st day of 8th grade! Accustomed to braces now.

 Day 1061  Wednesday August 31, 2016–Braces on top and bottom teeth! Brian did well. 0/5 SS  2hrs at orthodontist

Day 1058  Sunday August 28, 2016
Significantly decreased shedding; back still scattered papules on back

Day 1055 Thursday 8/25/16
Start probiotic capsule (culturelle)

Day 1054 Wednesday 8/24/16
Got bands in preparation for braces

Day 1053 Tuesday August 23, 2016
Skin feels dry but significant decrease in shedding—barely perceptible on sheets. Still a few open scratches to spot sheets occasionally. SS generally 0/5 to 2/5 with very occasional 2+/5 mostly backs of knees, posterior elbows, and chin.

Day 1048 Thursday 8/18/16
Busch Gardens, lots of milk. Increased scratching as evening came—3+/5; ? hives/welts in 1:30 am pictures of scapulae/shoulders and back. The areas were treated with sovereign silver spray, ice packs, and deep breathing. They looked bad, but only 0/5 to 1/5 ss  (see pictures below)

New onset raised rashy areas on right shoulder 8/19/16 around 1:30am

New onset raised rashy areas on right shoulder 8/19/16 around 1:30am

Another view of raised rashy areas on right shoulder 8/19/16 around 1:30am

Another view of raised rashy areas on right shoulder 8/19/16 around 1:30am

New onset raised rashy areas on left shoulder 8/19/16 around 1:30am

New onset raised rashy areas on left shoulder 8/19/16 around 1:30am

New onset raised rashy areas on back 8/19/16 around 1:30am

New onset raised rashy areas on back 8/19/16 around 1:30am

another view of back

another view of back

Day 1049 FridaySkin more calm; 0/5 ss; no raised rash. Weird….

Day 1047   Wednesday  8/17/16
2+/5 to 3+/5 SS—restart decreasing dairy intake and watching sugar intake;  Supplements include: DAO histaminase, pantothenic acid, B complex, Vitamin D3, Omega 3 oils

Day 1045 Monday 8/15/16
Feet look good—peeling gone. Past week or so decreased to 0 dairy. 0/5 to 2-/5 ss

Day 1041 Thursday 8/11/16
Feet look good.

Day 1028- Day 1037           Friday July 29-Sunday August7

Cooperstown, NY for baseball tournament 7/29-8/5 (see pictures here)

Spent all week in barracks with coaches and teammates. Managed skin care on his own. Barely shed. SS  0/5 to 3-/5  (increased ss in evenings). Did well despite the heat.

Edisto, SC for wedding 8/5-8/7—did well with heat, humidity, sun, sand, and long car rides

 

Days 1001-1010 (This entry is written in chronological order.) Saturday 7/2/2016 to Monday 7/11/16

Vacation out west—lots of activity—late nights, early mornings–no vitamins/supplements, no monitoring diet, no ACV/microsilkà scratching (ss) 1/5 to 2/5, energy great. Increased to 2+/5 toward end of week.

Day 1011 Tuesday 7/12/16
Open scratches, 2/5 to 3-/5 ss but skin presented with raised, rashy areas from neck to feet, rashy back, more open cuts. Started oral antibiotics--cephalexin– BID x 10 days (see pictures) and resume several x /week ACV or microsilk tub baths

Persistent mild rash of left posterior shoulder and arm. 7/13/16 prior to taking antibiotics

Persistent mild rash of left posterior shoulder and arm. 7/13/16 prior to taking antibiotics

 

7/13/16

7/13/16

7/24/16

7/24/16 left posterior arm and shoulder before oral antibiotics

Back skin 7/24/16--after 10 days BID antibiotics (2 tsp cephalexin/dose)

Back skin better– 7/24/16–after 10 days BID antibiotics (2 tsp cephalexin/dose)

 

 

Tops of feet looked really good 7/13/16.

Tops of feet looked really good 7/13/16 before oral antibiotics.

Peeling left great toe. 7/24/16--after 10 days BID antibiotics (2 tsp cephalexin/dose)

Peeling left great toe. 7/24/16–after 10 days BID antibiotics (2 tsp cephalexin/dose)

Back skin got really better and clear after antibiotics, but left great toe and top of left foot got worse. Thankfully, it, too healed–without other meds, just sovereign silver sprayed on it.

Day 1015  Saturday  7/16/16—2/5 to 3-/5 ss, rashy back

7/19/16—rashy back gone, 2+/5 ss

7/20/16—0/5 to 2+/5 (evening) ss

7/21/16 -left pinkie peeling like a snake

Day 1022  Saturday 7/23/16—finished antibiotic, sun/swim, skin looked good (see pictures above)

Day 1025 Tuesday  7/26/16 —Back/chest look good; decreased, decreased shedding but top of great toe peeling

Day 1026  Wednesday 7/27/16—-0/5 to 2/5 ss. ACV bath. Chest/back softer; still with left pinkie and great toe peeling like snake skin

^^^^^^^^^^Day 1001-1010 (This entry is written above is in chronological order.) Saturday 7/2/2016 to Monday 7/11/16

Day 989-Day 1000  Monday June 20-July 1, 2016
Dermatology appt. 6/20–> 0/5 to 1-/5 ss, we wanted to see if he could get patch tested to rule out contact allergens. Several small scratches on extremities were swabbed. Staph–of course—Nurse couldn’t tell me what a normal staph load was on individuals with and without eczema. They wanted to give him antibiotics despite no signs/symptoms of infection.

We discussed filling prescription at later date if skin worsens. Daily ACV baths or microsilk for infection control. Decrease intake of dairy, eggs, fruit/sugar combo. 0/5 to 2-/5 ss, shedding decreasing.

6/28–appt. with Naturopath. Feet better. 0/5 to 1/5 ss. Started on pantothenic acid and DAO histaminase. Continue with other vitamins and supplements. add culturelle probiotics later

Day 987 June 18, 2016
I deferred daily documentation because the past 47 days have been uneventful. Restarted microsilk tub at least 3 x/week to clean the skin/prevent infection, working toward doing microsilk daily like in months 3-6 TSW. He had the clearest skin head to toe at that point in time, though it wasn’t the most comfortable skin.

Scratching: ranges from 0/5 to 2/5 most days. Occasional periods of 3/3 to 3+/5 SS, but mainly late at night after a long day. The heat (90’s) has not worsened the itch (praise the LORD!), and we continue to use coconut oil for sunscreen. Even with all the sun from baseball, his skin doesn’t get burned. Uses Wang itch cream or lemongrass balm  and CBT/deep breathing for itch management (declines benadryl)

Routine: Daily bathing (usually at night)  followed by coconut oil on face, neck, trunk, arms legs; lemongrass balm ankles and knees–the itchy dry areas; sovereign silver spray on any open areas to prevent infection. Will moisturize again upon waking. (6/17/16–did not need moisturizing in a.m.)

Skin: Shedding has decreased to < 1/8 tsp overnight shedding. Ooze smell fluctuates between none to mild to strong–no ooze, just accompanied by heat and regular amount of sweat. Texture: skin on his back is more soft and smooth lately  but cycles through dry and flaky, to just dry, to dry and speckled erythematous patches. Arms, hands, knees and ankles dry despite moisturizing with coconut oil or lemongrass balm. Periodically, some body part–trunk, inner thighs, chest–will get scattered red patches like a heat rash. This is generally in evening and after stress which goes away by morning 90% of the time. Still scratching self hard enough to create small cuts on posterior shoulders, back, upper and lower extremities, knees, and ankles–esp the heels.

Overall doing well. TSW signs still present: 1) Visible, measurable shedding 2) Vomit-like, bloody, metallic, wet-dog ooze smell.  3) Elephant skin not as obvious.

Day 940 May 2, 2016  Beginning of “normal” skin shedding days and 1x/day bathing?

This past weekend, 4/30 and 4/31, we were away at baseball tournament in NC. Didn’t need shower in am nor need to change sheets due to ooze and/or shedding! Skin was comfortable 0/5 to 2/5 ss but shedding was barely perceptible. still showered at night followed by coconut oil to moisturize and Dr. Wang itch ointment on feet/ankles bid (2x/day) since March 30, 2016. ***Switched from sunflower oil back to unrefined organic coconut oil 4/10/16***

Skin: hotel sheets did not bother his skin! (we used to have to bring our own sheets to lay on top of hotel sheets. ours were washed in All-free). See 5/1/16 for description. B says skin felt fine and no am shwr needed (also no night sweating)

Day 939 5/1/2016 (at baseball tournament)

Barely perceptible shedding; no shwr needed; coconut oil and wang (bil feet/ankles) for moisturizer. Skin dry but not visibly shedding, flaky. Tiny dried scabs from scratching shoulders, feet/ankles, wrist/hands, but not on erythematous background. SS 0/5 to 1/5 during tournament and 0/5 to 3-/5 on car ride or while doing homework, eating at restaurant, not actively doing something.

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Basic regimen lately for past month or two (see pictures) is a shower in morning and either microsilk, shower, or  ACV bath at night (basically 2x/day bathing since December 2015 herpeticum problem). Both followed by moisturizing head to toe with sunflower oil. Started using Dr.Wang cream on feet/ankles on 3/30/16. Sometimes using lemongrass balm, zinc balm, or combo on certain areas, depending on skin appearance and signs/symptoms. Itch relief  via ice packs, Wang cream, deep breathing, CBT, pressure points, assist with scratching, massage, and sometimes Benadryl—which may/may not work but no worse.

APRIL 19, 2016 FEET PICTURES: what they look like on good days and 19 days after starting bid Wang ointment. Unfortunately, I didn’t pre Wang pictures, but skin condition is documented on calendar (see March calendar picture)

4/19/16 ankles after 19 days bid Wang ointment

4/19/16 ankles after 19 days bid Wang ointment

4/19/16 feet 19 days after bid Wang ointment

4/19/16 feet 19 days after bid Wang ointment

 

Day 913      4/5/16

Baby soft back, lichenification and dry dorsum (mostly medial and lateral borders) of feet and ankles. Waking at 5am with very dry, itchy ankles. Ooze smell.

–Field trip to Holocast Museum today. I chaperoned, and scratching was 1/5 from at least 9am to 2pm when I saw him.

–Around 5pm scratching increased to 3+/5 and escalated to 4+/5 with “skin hurting,” pain, itching, crying, screaming due to skin hurting. Bilateral thighs, especially inner, were full, pebble-grain rashy red.

–Applied combo zinc and lemongrass balm on thighs and Dr.Wang’s purple herbal cream to feet and ankles. Deep breathing, hugs, tears. Calmed down after about an hour, and he was functional again.

Day 912   4/4/16

Moderate-strong ooze smell from last night’s soaking wet from sweating. Dry heels, back baby smooth; decreased shedding.
–Slightly re/pink hue head-toe; pebble grain skin, dry, elephant skin, arms, knees.
–Microsilk tub; Dr. Wang eczema cream on feet/ankles, sunflower oil face to ankles.
–1/5 to 2/5 ss
11pm-soaked sheets with ooze smell sweat.

Day 911   4/3/16
AM–Dry skin; baby smooth back; light shedding.
PM—3-/5 ss; soaking wet sheet—night swea
Day 910   4/2/16

Baseball  Tournament–at field by 715 am, 4 games, very cold, left at 7pm, got home late.

–benadryl a little over 2 teaspoons in AM

–scratching 2+/5 during day

–purple potion (Dr. Wang’s cream) x3 due to very dry, itchy feet/ankles

Day 909   4/1/16

2/5 scratching; light flaking; decreased light red/pink hue face to feet

used Dr. Wang cream 3x

 

APRIL documentation 2016

IMG_2351

Day 908   3/31/16

3/5 scratching; headache; used Dr. Wang 4x for dry, itchy feet/ankles

Day 907   3/30/16    Started Dr. Wang herbal eczema cream

Pollen starting.

Dry, flaky upper lip intermittently for past few weeks. 3+/5 scratching especially in AM.

2+/5 in evening. Bilateral feet with red, inflamed itchy  dry dorsum especially the periphery (see calendar picture).

Need to restart microsilk tub.

Used Dr. Wang cream for 1st time, tested on right foot.  Brian reported immediate decrease in itch in right foot. Used ice packs for night relief.

 

Day   906   3/29/16

1+/5 am; 5/5 evening; microsilk

 

Day 905   3/28/16

Did ok. Ooze smell sheets; soft back.

 

Day 904  3/27/16

Ooze smell; soft back; 2/5 to 3/5; dry; tired, no shower tonight

 

Day 903  3/26/16

Ooze; increase dryness, flakiness, and itching

2-/5 scratching daytime

2+/5 to 3/5 in pm

 

Day 902   3/25/16

Increased itching compared to previous days

 

Day 901    3/24/16

Slight ooze smell; left heel better in am; soft back; dry cracked feet but ok.

Bumped heads with someone at PE—ok per nurse and Brian

 

Day 900   3/23/16

Better this am; 2/5. Left heel pain.  Red jue; microsilk tub in pm

 

Day 899  3/22/16

Decrease ooze and decrease shedding.

Better today. Great afternoon; skin looks better

Erythema hands/dry; baby smooth back

Left Heel Hurts

Microsilk tub.  58 degrees outside

Day 898 Monday 3/21/2016

Skin hurting again such that it’s painful to walk. Held it in at school but broke down as he came into the door after school. very emotional; crying; “I just want it to stop!” Cold, painful skin (primarily legs). Wrapped in blankets, pray, deep breathing. (Was there another component like school issues?)

Bedtime: out of sovreign silver. ankles cracked, small cuts on dorsum and sides of foot. bil thighs and knees erythematous and with multiple faded red dots (? from scratching) shower, moisturize feet with sunflower oil, zinc, and lemongrass balm followed by wet wrapping to feet; sunflower oil other parts; deep breathing, acupressure points.

Day 897 Sunday 3/20/16 –(SOVREIGN SILVER helped decrease itch?)
Still having oozy smell with emanating heat, dry itchy skin (especially feet,) and light shedding. Scratched up back, feet, ankles 3+/5 meltdown, crying,screaming about skin feeling funny.

After shower, sprayed back, knees, thighs, feet/ankles with sovereign silver. SS decreased to 1/5-2/5 the rest of the day

Erythematous head to toe as night comes. Microsilk at night.

Day 896 Saturday COLD agaiN!! SKIN PAIN AGAIN!!!

Ooze smell; itchy feet; moderate shedding; 3+/5; smooth, flaky

got Brian a compression-type shirt to keep loose shirt flapping/rubbing on skin. Did ok outdoors with baseball event.

Scratch 3+/5; Microsilk tub in pm

Day 895   3/18/16

Dry; dry adherent flakes; scratches on knees/ankle/feet; moderate shedding; 3/5 ss; reddish upper lip like perioral dermatitis

Day 894  3/17/16

Am–Benadryl before school; 3/5 ss; knees/ankles w/ more cuts/cracks.

Pm–Rash-like allergic raction on back—erythematous fied with pebble grain look/texture. ?? due to pollen?

 

Day 893    3/16/16

Am—Moderate flaking; strong ooze smell; 2/5 ss; damp/soaked pillow case

Pm—1/8 to ½ cup bleach to tub water bleach bath. Then red rash, 2+/5 itch afterward, so may have used too much bleach

 

Day 892    3/15/16

Am—ooze smell; mild flaking; 3/5 all day

Pm—Benadryl; ¼ to <1/2 cup bleach to tub of h2o

 

Day 891  3/14/16

Am-smooth baby butt back

2+/5 ss. Been eating sugar, dairy, etc.

8pm—MELTDOWN! Itchy feet!!!screaming. lasts about an hour or so before settling down.

 

Day 890  3/13/16

Itchy feet.  Tried; meltdown; ACV bath

 

Day 889   3/12/16

2+/5 to 3-/5 scratching

 

Day 888   3/11/16

Am—moderate back shedding, minimum neck; 2/5

 

Day 887   3/10/16

Am—minimum flaking; soaked last night. Sunflower oil after shower

2+/5

pm feet: vanicream-mupirocin mix then wet wrap w/ sterile rolled gauze after shower; SFO on rest of body

 

Day 886   3/9/16

Am—damp, slight ooze smell; minimum flaking and shedding; 2+/5 seemingly constant hand movement—self soothing?

Pm—ACV bath; soft, light-sandpaper to pebble grain texture

12 am—sheets soaked from sweat

 

Day 885  3/8/16

AM: mild flaking, damp, but no ooze smell. Night sweating?

3/5; CBT apt with Dr. Wàhypnosis

 

Day 884 3/7/16

Am–Mild neck and body flaking; heat; slight ooze smell; SFO after shower.

Feet look good; ankles itchy

Pm–3/5 near constant hands moving. 5-10 minute itchfest meltdown then ok. 2/5 after shower

No humidifier

 

Day 883   3/6/16  29 months TSW

Am-light flaking; shwr, heat;

2+/5

Pm– sfo  =vanicream/mupircin mix +wetwrap feet/ankles

Baby butt smooth on lateral aspect. Humidifier

 

Day 882  3/5/16

Am—feet good, texture: back light sandy pebble grain

Pm: v+m + ww feet/ankles and sfo face to ankles

 

Day 881  3/4/16

Am: damp; 1/5 to 2/5 ss

Pm: microsilk tub; vanicream + mupirocin and wet wrap feet/ankles , sfo

 

Day 880  3/3/16

Am—mild to moderate flake neck; pebblegrain back, minimal shedding; slight ooze; damp sheets; 1/5 ss today

 

Day 79   3/2/16

Am: heat but no ooze; dotted red/rashy? Chest/ues/back; ok after shower

Then itchfest/tears (ankle/legs) prior to school

Dry, flaky upper lip—perioral dermatitis

Pm ACV bath. Has a cold/stuffy nose. Itchfest again, emotional.

After sleep—heat, ooze smell

 

MARCH 2016 CALENDAR 

March 2016

March 2016

FEBRUARY 2016 documentation

February 2016

February 2016

 

 

Day 847   Saturday  1/20/16

1030am–Morning skin looks good, no scratches but head to toe dryness and flakiness, shedding like a blizzard! 73 degrees and 41% humidity in room, but humidifier ran out. 43 degrees outside. Not really scratching so much as brushing the flakes off with hands.

RX: slough off lots of fllakes with hands, brush; Microsilk tub x 20 minutes, 100 degrees, followed by quick rinse off in shower. Moisturize with coconut oil topped with lemongrass balm on ears, neck, upper lip, elbows, wrists/hands, knees, ankles. Just coconut oil on other parts.

Day 845  Thursday  1/28/16
Moisturizer in addition to coconut oil (CO), and in place of Aquaphor: started mixing The Home Apothecary‘s lemongrass and zinc balms together (1/26/16) and applying it elbows, knees, wrist/hands, and ankles after bath/shower. Wrapped with gauze. Appearance of skin looked pretty good/no worse the next day, so continued. Last night, applied it thickly over CO, wrapped w/ gauze, and socks.

Scratching: 1/5 to 2+/5, increases with stress/doing homework

Sleep/skin: able to sleep through the night without waking us up the past 5 days! All wraps and socks are off by morning. Skin dry but not as scratched as pre-EH

Day 841   Sunday 1/24/2016 (Summary of events from 12/22/15-today) Please refer to the ECZEMA HERPETICUM blog for pictures during this time frame.

HAPPY NEW YEAR! and new skin (every time it sheds off!)

12/22-12/26/15-Scratching (SS) had increased to 3+/5 to 4/5. 12/28/15 Pediatrician diagnosed him with 1st skin infection in over 18 months: Eczema herpeticum + possible staph; 12/28 started acyclovir for the herpeticum (800mg 4x/day x7 days) and cephalexin for staph (500mg 3x/day x10 days) (see pictures below.)

Returned to early-TSW treatment regimen:

1)Microsilk tub at night and shower in the morning (or at least twice per day bathing to clean and hydrate skin (needed to do bucket bathing 12/28 and 12/29 because skin was too painful to tolerate shower);

2) Moisturize head to toe (coconut oil [CO] and petroleum jelly [PJ], or The Home Apothecary’s lemongrass balm) within 3 minutes of getting out of water. Also spritz with water and remoisturize dry areas after school if needed (primarily upper lip, ears, neck, upper eyelids, hands–anything needing it due to dryness and cracking);

3) Strict clean technique: sterile gauze, no double dipping in oils, balms, and petroleum jelly (PJ);

4) As suggested by his pediatrician, started wet wrapping [WW] (only water and CO/PJ,) twice per day, starting with elbows, wrist/hands, knees, and feet/ankles plus wearing  slightly damp thermal underwear at night.  Then decreased to WW just wrist/hands and feet/ankles twice per day. Now, we WW hands/wrists and feet/ankles at night and just feet/ankles during day.

5) Diet: Also tried to cut back on gluten, dairy; restarted B complex, zinc, D3. Started Nordic Naturals Omega-3 capsules (Brian’s pediatrician recommended this years ago when after he was diagnosed with eczema, but Brian couldn’t take them at the time.)

6) Humidifier at night set at 45-50% with temperature about 70-73 degrees in his room.

7) Itch/scratching behavior: itch-b-gone spray, ice packs, 2 tsp benadryl as needed; moisturize with coconut oil, petroleum jelly , and/or The Home Apothecary’s lemongrass balm; pressure points, CBT/relaxation/breathing techniques for stress management; help him scratch gently

By 1/6/2016, done with all meds, infections gone, skin much improved, and scratching decreased to 0/5 to 2/5.

Between 1/10/16 and 1/16/16, outdoor temps in the teens and 20’s; dryness and measurable shedding continue, but scratching ok–1/5 to 2/5. RED sleeves again? dorsum of feet and at wrists? see post for pics. Face, neck, and hands were obviously erythematous with exposure to cold (being outside, going to store in subfreezing temps, etc.). Interesting erythema in hands with wet wrapping one night–notice blanching of the pinkies with finger extension (see pic) hmmm…vascular issue? TSW? Eczema? interesting….

Started using humidifier again on Monday 1/11/16, shooting for 45% (currently in house ranges from 21% to <40% due to the season and temperature.) Started CBT to try to help find self management/stress management techniques.

Between 1/16/16 and today, 1/24/15, (we had gradually started eating more gluten, milk, sugar) scratching seems to have increased in frequency and duration 2+/5 to 3+/5, but not necessarily in  intensity (not a furious, injurious scratching). However, overall skin remains intact, with occasional small excoriations to wrist and ankles. Playing in snow 1/23, 1/24, > 8 inches. Stuff we’ve been eating: meatballs, pancakes, popcorn, ginger ale, hot cocoa, nachos, grilled cheese, sausage biscuits, milk, pancakes with syrup, peanut butter crackers, a few bites carrot…It seems there’s a connection with the increased SS, but we lack the commitment to follow thru with a total elimination-type testing. Will restart cutting back on gluten, dairy, sugars, and processed foods.

OVERALL: Started winter workouts for baseball 2x/week, basketball practice/game 2x/wk, school. With the exception of the scratching, function/energy/school are excellent!

Here are pictures of documentation for the past 4 weeks.

IMG_2174

12/28/2015 to 1/6/2016 Treatment schedule for acyclovir and cephalexin

12/28/2015 to 1/6/2016 Treatment schedule for acyclovir and cephalexin

 

Day 818 Monday 12/21/15 

In past couple of weeks there have been good days and bad days with skin and itch. Energy and function still very good. However, periods of 1/5 to 1/5 ss, but generally 2/5 to 3/5 ss during day; awaking around 2-3am and OOB due to scratching or being cold roughly 4/5 nights. Still emanating heat at night: pulling back covers is like opening a sauna/steam room door. 2/5 ss at night. Using Coconut oil and lemongrass balm for moisturizer. Very dry, flaky skin with measurable shedding. Very similar to this time last year. Head to toe symptoms plus the oozing make me believe he’s not totally out of TSW. Eczema probably resurfacing. perioral dryness and slight redness on top lip. After hot shower and at night, back and trunk sometimes present with erythema similar to a heat rash. Generally better by the morning. Winter flare continues. see pics, but feet looking okay so far, despite increased scratching of them the past few days.

Day 803 Sunday 12/6/15: steam/heat emanating from body at night but skin still very dry and flaky. ss 2/5. humidifier on. noticed ooze smell return: TSW not over yet.

super dry on upper lip-looks like perioral dermatitis. at least he’s not on TS. continue with coconut oil and balms

Day 801 Friday  12/4/15–Intensity of ss at night decreased 0/5 to 2/5. Using the dehumidifier. No fever, but the heat emanating from his torso is palpable when holding hand 4 inches from his body! Sweating again, but sheets are not drenched like last year–just damp–and not as TSW oozy odorous.

Energy, function: excellent–straight A’s in an all honors curriculum; finished strong for baseball and cross country. Now doing basketball for the winter. Proof of his activity: broken hand at end of summer diving for a baseball in a tournament and sprained foot last weekend–still bothersome–from jumping on/off things like a par 4/Ninja warriors course

Skin/itch: Very dry like last year (definitely weather/season-related); he says it feels tight and that coconut oil fills in the “cracks” and helps him move better. Need to constantly apply coconut oil or other moisturizer like Stephanie Home Apothecary’s lemongrass balm and specially-made Breezy balm. Measurable shedding again. Itch 1/5 to 3/5 during the day, depending on activity or lack of. Better the past few days. Slight erythematous areas; a few small open scratches on elbows, but not as many as last year. Open scratches on posterior scapulae on 3+/5 ss nights, but better lately.

General nighttime skin routine: Shower, coconut oil, bed. If he wakes up scratching during the night, I will reapply coconut oil or the balms to dry, itchy areas, and scratching stops.  The key for him is to keep skin moisturized, but he dries so quickly! within 1-2 hours after application sometimes.

 Day 799   Wednesday  12/2/15 –Awoken at 2:30am with 2+/5 ss and tossing/turning. applied coconut oil and lemongrass balm. Been really thirsty esp at night. Asked for ice water at 4:30 am. humidifier still on. he’s still in own bed.

Day 798 Tuesday 12/01/15  NIGHT SWEATING Returns (on 11/30/2015)

(This post is very similar to the post on 11/30/2014. It’s incredible how closely the symptoms/onset match even a year later. How cyclical is eczema/TSW!)
For the past 2 nights, Brian has awoken scratching furiously (4/5) and sheets seemed damp withsweat. Felt like sweat but smelled a very little like the ooze of old. His back was erythematous and mottled like a heat rash. 

Started humidifier in his room. Set to 55%; house humidistat reads 40-45%.

SLEEP: Since early November, he’s been waking up around 2-3 am to come to our room–awakened due to scratching and being cold? Past few weeks not getting sound sleep through the night anymore, sleep scratching 3+/ to 4/5 several times between 1:00am and 5:00am; sound asleep by 6am

SKIN: scratches on shoulders/blades, back, lateral glutes; a few small scratches on elbows and knees; doing microsilk baths nightly past several nights to prevent infection. coconut oil to face/body, breezy balm or lemongrass balm to knees/elbows/feet/ankles

Skin very dry and flaky despite moisturizing; increased shedding

OTHER: appears to be some increased emotional lability this past week; reporting/crying that skin was hurting/stinging right after microsilk bath but couldn’t give description. Better after deep breathing and application of coconut oil. Back to laughing again. Microsilk helps smooth the skin.

School: despite the disrupted sleep, Brian has been able to get up by 7:30 am to catch the bus at 7:50am every morning so far since school started in September.

Tonight, he fell asleep at 10pm then awake at 11:30. 3/5 ss. I stayed in his room to assist w/scratch and apply more coconut oil/lemongrass balm.

Be patient. Breathe deeply. I thank the good LORD that he continues to heal Brian, even though our eyes and ears beg to differ.

***CATCHING UP FROM NOT POSTING FOR MANY, MANY DAYS***

11/17/15: Return of measurable shedding–>at least 1/4 tsp. (picture)IMG_1921

11/15/15: Very, very dry, flaky skin primarily on neck, trunk and extremities. 3-/5 ss. Started 7-day pear juice juicing (juice together: 1 asian pear, 1/2 lemon, 100g celery, 1 tomato). Brian likes it. TCM  for chronic eczema.

11/11/15 Started waking up around 2-3 am to go to our room due to scratching and/or getting cold

11/2/2015: increased ss overnight; rashy/hives., redness, painful dryness; 3+/5-4/5 and itchy, cut ears

11/1/15: increased ss to 2+/5 to 3-/5 at night; getting dry fast. Started aquaphor again. cuts sting

Day 766 Friday 10/30/15 DISRUPTIVE NIGHT TIME SCRATCHING RETURNS!

11pm to 3am 3-/5 ss just like last year this timeDry, adherent flakes. Able to play  in cold with minimal arm/legs covered

10/26/15: ??ooze smell or just sweating at night?? noticed increased heat emanating from body at night

10/25/15: Day-o/5 to 1/5; night 2+/5 to 3/5

10/21/15: New:cut/crack in skin where right earlobe attaches to the side of the head. VERY DRY skin.

10/20/15: 3-/5 ss; anxiety–> 3/5ss

10/19/15: AM increased scratches, still mottled slightly pink; 3/5 at night. restart using icepack at bedtime.

10/18/15: 0/5 to 2/5 ss but increased open areas–> coconut oil, breezy balm, Zn balm, mupirocin

10/14/15: ran out of mix. increased dry skin. resume coconut oil

10/7/15: not red in am. continue compound through 10/14. On 10/13, 3+/5 ss from 4:30-7pm.

10/6/15:  2 years TS-free! but not itch-free. 1/5-2/5 ss at night. Red, raised rash at bedtime. Started a compounded mixture of vanicream -mupirocin (10-1) applied BID to itchy areas.

Day 741  10/5/15: Red, rash-like eruptions on shoulders and knees. mupirocin, coconut oil, lemongrass balm

Day 740   10/4/15: increased number of open scratches on back

9/30/15:   2/5 to 3/5 ss

9/29/15:   3+/5 ss, esp left heel

Day 728 Tuesday 9/22/15

Energy/function: Doing cross country and baseball plus strength/agility training on own (using own body weight).

Sleep: Asleep by 10:30 or 11 and up by 7:15 am to walk to bus with friends by 7:35am. Advised him/dad to get to bed earlier but they’re spending time playing ping pong, box jumps, and other active stuff prior to bed, possibly making it more difficult to fall asleep

Skin texture: dry, rough like fine to medium grit sand paper; some pebble grain texture

Intact skin: feet face and neck continue to be smooth and clear; trunk, arms and legs still free of cuts/open scratches but periodically have papular appearance that comes and goes

Scratching: 2+/5 to 3/5 –seems to be increased frequency and duration. able to stop briefly with calm hands reminder. more ss at night; using some tea tree/lavendar/frankincense itchBgone spray on shoulders and inner/lower thigh itchy areas.  ?? due to decreased sleep, change in weather, etc.

Vitamins: D3 and restarted 1/2 tab B complex today

Day 724  Friday 9/18/15

2 weeks of 7th grade down.  Skin was doing ok with 0/5 to 2/5 ss. Last night ss increased 2+/5 wsp abdomen and knees. symmetrical pinkish, raised rashy areas about 4″x6″ present over bil anterior rib cage–he was scratching this area a lot.  Applied zinc balm. used itch b gone spray on his posterior knees. Doing well overall. Sporadic about taking vitamin D3. Not taking any other supplements. Diet is less than ideal–lots of milk. trying to push fruits and veg. Reminders for “calm hands”.

Deep breathing, relaxation techniques and prayers at bedtime, with ss 0/5 to 1/5 prior to falling asleep btwn 10 and 11pm. Awaking around 7:10am, leaving the house around 7:35am with friends and able to catch the bus on time. This time last year bus riding didn’t last too long, as an extra half hour of sleep for healing was more important than riding the bus. I ended up driving him to school, and he caught the bus home. this gave us some mom-son and devotion time on the rides to school. Very well worth it.

Function and energy excellent so far. Baseball, exercises on own, snd possibly on cross country team. Feet and face look great so far. Exfoliation is normal-not measurable shedding. The fall and winter months will tell whether or not he is over TSW.

Using just coconut oil, which he applies independently primarily on face and arms in am and pm–small amounts. I help with his back–he hasn’t really been applying anything to his legs and feet/ankles. God is Great. Thank you for your healing touch, LORD and your continued healing of all your children!

Day 715 Wednesday 9/9/2015  2nd day of 7th grade!

See pics on blog. Trying to be in bed by 10 and up by 7:10 am. Able to catch the7:45 bus 2 days in a row! 0/5-2/5 ss. Happy with all his classes and teachers. Feet look great with exception of a few areas. still with negligible shedding. overall skin dry but not flaky. Face continues to do well since Spring 2014. Keeping nials filed down. doing just 4000 iu D3 and holding other supplements to see if body is well enough to process stuff without additional support. so far, no worse than when on vit/supp. Diet: despite testing for some sensitiviteis to dairy, fruit-sugar combo, eggs, and a few other s, we are doing no strict restrictions but trying to take things in moderation. He doesn’t really care for straight up eggs, so that’s not a problem. Enjoying the good times, bracing for the fall and winter onslaught!

Day 708 Wednesday  9/2/15  VITAMIN/SUPPLEMENT CHANGE

Scratch: IMPROVED! 0/5 to 1/5 throughout day. Brian attributed it to peeling, even though he did not get a sun burned.

Pediatrician appt: annual physical; did well, great, supportive ped!

Restart D3 vitamins. We’ll restart B complex if his BMs start clogging the toilet again. Will continue to hold all other vitamins and supplements: Zn, Mg, glutathione, NAC to see how skin fares with fewer supplements.

Skin: a few more areas (old ones) with more dryness; picking doesn’t help; still mostly intact though. Back is generally smooth to rough to smooth with some raised cm-size spots that look like mosquito bites–not too erythematous, though–then gone the next day–

Shedding: no sheet shaking or measureable quantities of skin. Seems to have normal exfoliation at the moment.

Day 707  Tuesday 9/1/15  ITCH IS BACK!

Spoke too soon. 3+/5 ss last night til 1am. He said, “Yeah, maybe my room’s too dirty.” Scratching enough to make it hard to go to sleep.

Skin: starting to develop red papules on anterior aspect of bil knees; increased dryness and rougher texture of skin on arms; back is less smooth; scalp 2+/5 itchy with some flaking; 2″ long thin, diagonal scratch over left scapular spine

Will restart vitamins and supplements to see if they will help his body  process stuff better. Used Itch-b-gone and ice to manage itch.

Day 706 Monday 8/30/15

3+/5 ss all day long! Not that frantic, itchfest scratching, but just a constant moving of the hands to scratch the neck, then, shoulders, then back, then knees, then hands, then neck, etc.  all while carrying on whatever task he was engaged in.

Need to move to the Bahamas, I guess.

Day 705  Sunday  8/30/15

Out of town 8/21-8/29 on a 5-day cruise to the Bahamas and a few days in Charleston.

Skin improved over the vacation, with cuts closed on elbows and anterior knees and normal-person exfoliation. Used coconut oil for sunscreen and he was in the sun and beach without a sunburn. As he tanned, areas of hypo pigmentation appeared on neck, elbows, hands, legs–wherever he scratched. BIL achilles healed; Ankles looked great by the time we got home. Still a few areas of adherent flakes and dry patches but not erythematous.

Skin: smooth back and relatively smoother, less dry-feeling arms. No open cuts anywhere. Mottled skin appearance as noted above. Normal exfoliation, i.e., no sheet shaking for past week or more!

Scratching: 0/5 to 2/5 (no worse than when we left) increased at night with fatigue and with sweat. no stinging with sweat, but salt water pool did sting a bit. getting in the beach water for 2.5 hours was fine.

Moisturizer-primarily used coconut oil after a shower and before out in sun. No Zinc/lemongrass/breezy balm for the 10 days. Occasionally used Itch-b-gone spray made by The Home Apothecary.

Diet: Bad! soft serve ice cream 5-6 times/day, dessert after dinner every night, milk products; withheld vitamins and supplements to note effects on skin and itch. Skin was better; itch was no worse; no moisturizer needed at night.

Sleep: slept soundly at night using ship-supplied sheets and towels, without skin reactions. Stayed up until 12 or 1am; slept until 7:30 or 8am the first 4 days, then slept til 10 after the cruise.

Overall, function and energy were excellent; skin/itch did great even with bad diet and no supplements! See pictures on blog. By “great” I mean the itch was no worse than when we left: 0/5 to 2/5 most of the time. Occasionally 2+/5 later in the evening, but he said it was because he was excited to do things.

Day 694  8/19/15  Wednesday

Bil achilles looking better, cuts closing, adherent flaking and dryness gone. Bil anterior knees better, too, with fewer scabbed excoriations. Itch b gone sprayed on areas that itch. ACV bath  at night for infection control. Keeping nails filed short/nubs. coconut oil on upper body after shower and Lemongrass/zinc balm combo and/or breezy balm applied to knees, feet, and ankles.

Staying up late, sleeping in late. SS: 0/5 to1/5 past few days at bedtime.

SS: 0/5 to 1/5 during day. increases to 1+/5 to 2/5 with heat and sweat. Skin tan with hypopigmentation in areas of scratching: back of neck, elbows, hands, knees.  Been using coconut oil as a sunscreen, which has worked very well–no sunburns despite playing outside or  baseball in sun long hours.

Scratching intensity increases with stress. Reminding him to use Dr. W cognitive behavioral techniques but it makes him scratch harder.

Day 691  8/16/15  Sunday

Compared to this time last year: Function and energy 100% better; scratching decreased; able to sleep through the night without waking parents at least 5-7 days/week due to itch; appearance of skin on feet/ankles not as good as last year; Function and energy great. Scratching 0/5 to 2/5. Skin on ankles still scattered adherent flakes surrounding small cuts from scratching. Dorsum of feet starting to get scratches again.Not as good compared to this time last year.

Doing conditioning and baseball practice in heat and moderate humidity. **Right medial epicondyle apostatitis(?) from doing long toss. will rest, ice stretch, retrain.

Skin: overall significantly decreased shedding–now more like normal skin exfoliation. Still with scattered excoriations over slight papular eruptions due to scratching primarily elbows, knees, ankles., a few areas on shoulders. Some cuts from scratching over bil scapula

NEW: Itch be gone spray (with hazel, tea tree, frankincense, and lavendar from Home Apothecary) seems to help short term for scratching.

Vitamins/Supplements: mg, zn, 1/2 tab B complex, D3 daily; every other day: NAC and glutathione.

Continue with ACV baths 1-3 x/week or microsilk tub; uses coconut oil for moisturizer and sunscreen; using zn balm, lemongrass balm, breezy balm from Home apothecary primarily for knees  and feet/ankles.

Day 685  8/10/15

Swimming, 1.5 hr conditioning out doors, playing all day with friends.

skin/scratch: 0/5 to 2/5; no TSW shedding–almost like normal skin; skin on back smooth; elbows and knees pebble grained; small scrathes around BIL achilles due to itch

RX: he doesn’t want any antihistamines nor NB UVB. managing itch w/ ice and balms (lemongrass, zinc, breezy balm, and now trying tea tree oil with coconut oil); coconut oil for moisturizing as needed. Not applying as much–now just on dry areas.

hypopigmentation on areas he scratches most. overall skin color is normal (not erythematous) and no edema or obvious exfoliation

Day 682  8/7/15 Friday

Function and energy continue to be excellent. Swam in the outdoor pool for 2-3 hours Wed. night and skin looked fine. Scratching 1/5 to 2/5 with many hour+ episodes of 0/5.

Increased itching last night probably a SS 3 to 3+/5. Shedding still very low, back smooth, ankles itchy, dry and scratched; multiple red-dotted  or excoriated papules on elbows and knees; dry papules around ankles. multiple small cut from scratching. Dorsum of feet soft, clear, and normal skin color. Using ice packs at night and coconut oil for face to thighs and zinc/lemongrass balm for distal to thighs, ankles/knees

Crew leader for VBS all week. Been drinking whole milk, zone bars, tried protein shake–I don’t like the sucralose.

Day 653 7/19/15 Sunday- Day 670   7/26/15   Sunday  (Week-long trip to Myrtle Beach for Summer Nationals 11U tournament)  Skin and Itch managed well. 

Restarted vitamins/supplements: 1/2 tab B complex, Mg, and Zn daily; 1/2 tab glutathione +NAC (every other day)

Every day: hot, humid.Windy at the pool and beach. Lights out by 10:30 , awakened at 6:15am to be at fields by 7:20am. Beach, pool, ballfields. Sometimes skipped night shower.

Sunscreen: coconut oil on face, neck, arms/hands–did great. no sunburn even after being outside 6+ hours

Meals: no restrictions: 2% milk every day, moderate sugary snacks, steak, pizza, grilled cheese, donuts, chips, fruity pebbles, etc.

Skin: no worse; a few excoriations from scratching elbows, posterior shoulders. Dorsum of bil feet improved, smooth and clear, no erythema. Achilles BIL still with papules, dry, some adherent flakes. Still with significantly low to no shedding–no need to change/wash sheet every day. Texture varied from soft, smooth on back to dry but supple on extremities.

Stinging: skin stung on 1st time in the ocean water. When encouraged to go out again, he acclimated and played in chest deep water. After that day, no more complaints

Itch/scratch: During activities and out on hot ballfield 4-8 hours per day: ss 0/5 to 1/5. When came home in evening, self-soothing light scratching of chest, and needed “calm hands” reminder 1+/5, also on car ride home. Stretches of 0/5 for hours then 30 minutes or so of 2/5. Able to sleep on air mattress. Used ice packs for feet and breezy balm or zinc+lemongrass for feet/ankles/knees; coconut oil for other parts–light application. Itch did not interfere with activities.

Day 652  7/18/15 
Busy day in and out of hot, humid weather. Sweating appropriately but no complaints of stinging.
Sleep: sound sleep at least 7 hours last night

Night: ACV bath; some coconut oil torso/face; zinc-lemongrass balm combo applied to Bil LE distal to mid femurs, bil elbows and some on a few areas on shoulders; lights out 11:45 pm 0/5 ss to 1-/5

7/17/15 Friday Day 651 RESTART ALL VITAMINS/SUPPLEMENTS
After 2 weeks of just 1/2 tab B complex, will restart Zn, Mg, D3, NAC, and glutathione
ITCH: 1/5 to 2+/5
STING: heat+sweat+sun in 1 hour practice: within 30 minutes, he started stinging and held on as long as he could. took a break from the heat in tears because chest was stinging from sweat, heat, microcuts from last night’s scratching
Right ear: morning: slightly abraded; by 11:53am–> healed and barely visible

START: BID application of a lemongrass and zinc balm mixture to bil LE, especially achilles area, and elbows to prevent infection and facilitate healing
Diet: chick fila, lemonade, ice cream; hamburger, popcorn, soda, thin mints

Bedtime: shower and moisturizer routine. skin on extremities cal; pebble-grain texture/dry but not loose flaky; papules not red tonight; LE red sleeves have been gone a couple of weeks

Pictures after 2 weeks taking just B complex (1/2 tablet)

IMG_1694 IMG_1695 IMG_1696Abraded posterior right ear 7/17/15.

7/16/15 Thursday Day 650
Abraded posterior right ear still present not worse.
Skin: at night looks a little flared (slightly pink background dotted with scattered papules) but by next morning–> calm and papules less obvious

7/15/15 Wednesday Day 649
Skin: morning: skin not erythematous but there are multiple tiny red dots on chest/back; right ear still abraded.
Started a lemongrass-Zn balm mixture to apply to bil ankles and other parts that are dry or have dots of open skin from scratching.
***Will go back to Vit/Supp regimen if skin not better by Friday 7/17

7/14/15 Tuesday Day 648 EAR ABRASIONS are BACK!
Skin: abraded mark on left abdomen and right posterior ear due to 3/5 ss last night. skin on back normal in morning but at night it’s got scattered tiny red pimples on trunk and back.

7/13/15 Day 647 PICTURES of how skin is since doing just 1/2 B complex since 6/2/15 (10 days) See this POST.  Recovering from 2 hour time difference btwn SD and VA.

Sleep: sound sleep at least 8-10 hours; slept in late
Itch: increased  to 2+/5 to 3/5 at night
Skin:slight increased erythematous background
Shedding: increased to almost 1/16 tsp compared to barely measurable 7/2 (SEE last picture toward end of post)

7/10/15 to 7/12/15       Day 644-646
Drove to Denver Friday, met up with skin friends Saturday (see post) for 5 hours at dave and busters: 0/5 to 1/5 ss; then caught redeye 12:55am. Arrived in VA at 9:15 am Sunday. slept well on plane with 1 episode 2/5+++sleep scratching. calmed after using bathroom. slept less than 6 hrs.

7/6/15 Day 640
Busy weekend with family and grandma’s pet dog in the house.
Weather: Hot and humid–> NO stinging despite heat and sweat
Sleep: past 3 days able to sleep soundly through the night on aerobed
Scratch:
0/5 to 1+/5 ss during day. mostly 0/ to 1/5 longer episodes of 0/5. comfort or nervous scratching/soothing
Skin: dry over elbows/knees, ankles esp achilles but no worse than usual; multiple scattered excoriations that look like tiny red/brown dots from where he scratched
Shedding: very much decreased. Not having to shake and wash sheets every day
diet: not doing good at avoiding milk products–> has at least 1 cup per day; fruit/sugar combos (blueberry pies); not eating straight eggs though

7/4/15     Day 638    HAPPY 4th of JULY!
Great day; hot humid weather; parade, played; picnic; lots of cookies, ice cream, some milk
Scratch: 0/5 to 2/5
Skin: calm during day, less calm at bedtime probably due to fatigue because scratching was 1/5 before falling asleep
Using just 1/2 tablet B vitamin. shower and moisturizing routine as needed.
7/3/15 Day 637
Fly to SD 7am flight. Did well getting up without fuss and with little sleep. 1/5 SS. 1/5-2/5 entire long day. Asleep after 12am SD time.(2am VA time)

Skin w/ slight increased flare due to fatigue. scratch: 1/5 at bedtime

7/2/15  Day 636     TO CONTINUE VITAMINS/SUPPLEMENTs OR NOT TO SUPPLEMENT?
QUESTION: How will going without supplements except B vit affect skin and itch? Up until today, vit/ supp: B complex; Zn, Mg, D3, glutathione, and NAC (Ran out of mercurius)
BASELINE: skin PICTURES taken (SEE below)
Itch: 11am -2pm. 0/5 to 1-/5. After 5pm about 1/5
Shedding-very little, visible but more countable rather than measurable amt
BM– daily to every other day soft
Start TRIAL treatment: everything same except take just B complex and hold other vit/supp; continue other skin care routines as usual.
Bed 11:45; still awake @ 12

BASELINE PICTURES 7/2/15 taken in morning

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Very decreased overnight shedding

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Day 635 Wednesday 7/1/15

Function, energy, and activity excellent. Needing less coconut oil for moisturizing. Continue with ACV, bleach, and microsilk tub baths alternating to prevent infections 5-7 x/week.

Methylation/Naturopathy/MTHFR: Finished mercurius today. Still on B complex, Zn, Mg daily and NAC + 1/2 tab glutathione every other day. working on weaning from NAC/Glutathione.

Sleep: sleeping through the night without waking from hard scratching; uses 1 ice pack at night for feet.

Scratching: BETTER: 0/5 for longer periods of time (45 minutes to 1hr before having to scratch); 3/5 at its worst, primarily bil ankles, knees, elbows, shoulders

Skin: decreased erythema/pinkness; still with multiple scattered excoriated papules over anterior knees, bil ankles, elbows, and several on upper back due to scratching. Texture of knees/upper extremities still pebble grain

Applied Brian’s Breezy Balm to bilateral knees; seemed to decrease scratching.

Shedding: BETTER: significantly decreased compared to 5/25/15.

7/1/15 morning shedding

7/1/15 morning shedding

5/25/15 Shedding less than 1/4 tsp

5/25/15 Shedding less than 1/4 tsp

Day 630 Friday 6/26/15  GOOD week 

Successfully survived 4 days of baseball camp in 92, 97, 87, 89 degree weather and humidity. Did great with 0/5 to 1/5 ss during activities. Function and energy excellent despite waking up at 7:45-8am and going to bed 11pm or later.

Skin: Brian reports skin is doing better. Dorsum of feet healing–fewer red dot excoriations; Brian scraping the scabs and dry skin off. Still with pebble-grain texture to shoulders, elbows, arms, legs, but back is smooth as a baby’s bottom with a few dots here and there. lumbar region drier than thoracic, but still in good shape. Torso skin good/normal; extremities dry, pebblegrain, excoriated here and there. Been using coconut oil for sunscreen with no signs/symptoms of sunburn.

Itch/scratch: 0/5 to 1/5 most days with seeming increase to 2/5 more or less in the afternoon and evening. Did well even though skipped night bathing routine 2x due to strong storms and lightning. Comfort or nervous scratching/soothing needs “calm hands” reminder.

Rx: Brian doesn’t want to do NB UVB because he feels he is doing fine. Same supplements but now tapering off glutathione and NAC (every other day 1 NAC and 1/2 tab glutathione) and continues with Zn, Mg, B complex and mercurius daily. Shower, microsilk bath/ACV or bleach bath daily w/ exceptions and followed with coconut oil on body and lemongrass balm on feet/ankles.

Day   626    Monday   6/22/15 First day of baseball camp 9-12 M-Thu

AM: up at 720am; got to ballfields/camp at 8:10am 1/5 ss

Activity: 8:15am-12:20pm camp–outside, 90 degrees, coconut oil for sunscreen. 1/5 to 2/5 scratching, no ice needed, able to participate fully and was not distracted by itching or sweating. 2pm to 4:30pm: played indoors and out (wiffle ball in the heat) with friends at home. 2/5 to 2+/5 ss. soda; ice cream

PM: 2+/5ss . Bleach bath, shower, coconut oil on body/lemograss balm + mupirocin on feet and cut areas, books, bed. tired due to an early wake up and a busy, activity-filled day. asleep by 11:45pm.

Function: excellent–running, practicing, playing in the heat and sweating without stinging or uncontrollable itchfests.

Skin: Looked better after bleach bath; but still with abraded tops of pebble grain skin worse on medial forearms and knees/ankles that look worse prior to bathing.

Day 624-625 Father’s day weekend and Breeze elite summer sizzle tournament

Won another championship in the heat! Brian played with 1/5 ss while on the field and 1/5-2/5 ss during day, increasing to 2+/5 to 3-/5 as evening came.

Day 623 Friday 6/19/15

Slept over at a friend’s house last night, biked 2-3 hrs in the heat yesterday and about an hour today, and did well. 1/5-2/5 ss and excoriations on places noted below. He said he had very little itching last night. mid 80’s and 90’s this week.

BKFST pancakes; lunch Mcdonalds; ice pop

1/5 to 2/5 during afternoon; watched baseball game outside, biked more, ate at CiCi’s pizza.

Microsilk tub, moisturizer, in bed/asleep by 11:30pm. 1/5 ss as he was falling asleep (very tired); used ice pack under feet, and I applied lemongrass balm + mupiricin to dorum of feet and ankles bIL.

Day 622 Thursday 6/18/15

Past 2 weeks have been up and down in terms of scratching and skin quality, as is usual with the skin cycling.

Skin: Dorsum of feet improving (see pics on post); back smooth and soft; barely noticeable SHEDDING–definitely not measureable; morning skin looks better than before bed skin (which is more pinkish and red dot excoriations more pronounced). During morning, excoriations and red dots and pinkish hue less pronounced, and on his back today they seem almost gone.

Trouble spots (more scratching and red dot spots/scabs) are BIL shoulders, elbows, knees, ankles and lateral aspect of dorsum of feet.

Itching: Overall seems to have decreased to 1/5-2/5 with some periods of 0/5 for 45-60 minutes at a time. Still seeing increased scratching behavior in stressful situations. Trying to work on deep breathing, visualization, and relaxation techniques for these episodes.

BEDTIME: still using ice pack and moisturizing with coconut oil and lemongrass balm + mupirocin for areas that look infected.  Micosilk tub or bleach or ACV bath 1x daily

SLEEP: now that school’s out, he sleeps in late and I let him wake up whenever–unless we have to do something. I believe more sound sleep will help his skin. He doesn’t seem to be waking up with s3+/5 scratching (therefore waking me up) like he used to. YAY!

Day 607 Thursday, 6/4/15

Fell asleep late the past several days due to lots of projects and tests. Baseball’s been rained out. 2/5 to 3-/5 ss during the evening. Coconut oil, lemongrass balm; mupiricin for open ares

Skin: skin on his back is cycling to the dry, rough, adherent flaky phase again after a week or two of minimal shedding and soft, smooth back skin.  The feet are a different story…mottled excoriations on bil feet; 2+/5 ss at night

scratching: 1/5-2/5 before school

This time last year, Brian’s skin turned a corner. He started sleeping in his own bed after 7 months sleeping on the floor downstairs in the family room, started sleeping in own bed longer, less moisturizer needed, less itching.

We were using the microsilk tub almost every night, too. We haven’t used it lately–can’t remember how long it’s been. need to start up again.

Day 604 Monday June 1, 2015 Monday    Happy 12th Birthday Brian!

Too much dessert this weekend >>increased scratching esp overnight 6/1/15–> drew blood in multiple sites up with 3/5 ss 2-3 times. stopped pear juice concoction.

Day 601 Friday May 29, 2015

Bedtime ss 1/5; night sweating again last night with 2 rouses due to 2/5 ss on feet–lemongrass balm->back to sleep. 1/5 to 0/5 ss wake up to drop off at school. No pear juice last night but have been more diligent about having him take the 5 drops of mercurius, which is supposed to help with the night scratching. Day time ss past few days 2/5 to 3+/5 with increased stress (lots of projects due before end of school).

Been lax on the diet–> having some whole organic milk, but limiting to 1/2 gallon or less per week vs 1.5- 2 gallons/week previously. Occasional soda and ice cream or milk shake. I know–where’s my will power and resolve? If the foods were anaphylactic, he would definitely not be getting them, but he is making informed choices. Still trying to cut down on overall amount of refined sugars.

SKIN: shedding significantly decreased but continues with adherent flaking that are just too irresistable to leave alone–so we pick. feet still excoriated and dry like last year.

Great day at school. 2/5 ss at home. baseball game 0/5. shower routine. 1/5 at bed time. PTL! Mercurius must be working. Scratching more calm past few days.

Day 593 Thursday May, 21, 2015 NATUROPATH AND HOMEPATH visit

Followup visit to Naturopath; also worked with a homeopathic doctor. Based on signs and symptoms: radiating heat, itching worse on feet and back scalp, occasional soaking night sweats with old ooze smell, increase itch w/ heat, preference for hot water showers but ice helps relieve itch when dry, increase itching with anxiety and stress. (still with slight erythematous demarcation on dorsum of feet): treatment: homeopathic mercurious 5 drops /day. continue with 1/2 tab glutathione, NAC, mg, zn, vit D3, B complex. Continue pear juice concoction at night to dispel heat.

Started TCM pear juice concoction Mon. 5/18/15: juice together celery, pear, 1/2 lemon, and tomato. put over ice. Drink at bedtime. Brian says pear juice seems to have helped him sleep better at night.

SKIN: progressed to the very little shedding stage YAY! back is soft and smooth, arms and legs not as rough. still with multiple excoriated papules over bil dorsum of feet with very dry skin and adherent flakes on BIL achilles and dorsolateral border of left great toe. Scattered excoriated papules over bil shoulders in deltoid area. knees look much better with few if any excoriations. Decreased erythema noted on dorsum of feet and distal legs.

ITCH: Past few morning before school: 1/5 ss ; afternoon and during homework 2/5; evenings before shower 2/5 to 3-/5 but much better than about a week ago. Able to settle in for bed with just a few bursts of quick scratching rather than continuous bursts of quick scratching for an hour. Still using ice pack and lemongrass balm to feet as well as acupressure, scalp/forehead massage and deep breathing/relaxation techniques.

SLEEP: still at least 2 breaks in sleep at night with requests for ice/balm to itchy feet and ice water to drink.

FUNCTION: staying busy with lots of tests, projects, and baseball. Doing really well despite the itch.

DAY 590 Monday, may 18, 2015:  Start TCM Pear juice concoction (do for 7 days)

Day 589 Sunday May 17, 2015

Past 2 days have been in the 80’s. Activities outside: 2 hr baseball practice Sat/Sun, b-day party-paintball Sat; and played out doors with friends. Hot, sweaty, wore shorts and sleeveless shirt. ss 2+/5-3/5. On sunday, increased rough raised papules on arms and legs not grossly erythematous but excoriated from scratching. Very busy weekend-got all homework and projects done and  did all activities without complaints of stinging. No vitamins/supplements past 2 days.

ITCH: bil feet still very itchy at night 3+/5ss on dorsum–rough, red, raised areas, adherent flakes. up at least 2x/night asking for lemongrass balm to relieve itch

Day 587 Friday May 15 2015

had milkshake and chickfila after 9:30pm. After shower routine, light pink hive-like rash from neck to legs. still 2/5-3/5 ss during day and evening. feet still speckled itchy.

Day 584 Tuesday, May 12, 2015

Night sweating but not as bad as sunday night; restless night with lots of tossing, turning, scratching. asking for balms to itchy feet at 1:42am and 6am

2-/5  to 1/5ss  from 7:30am-8:20 am; positive mood

Out of NAC. Will see what the next few days bring.

Day 583 Monday 5/11/15

Soaked sheets night sweats. Able to get up by 7:20am on own. Says abdominal skin feels almost normal, or not so dry. 1/5-2/5 ss this am.

Tired and whiny; Shower routine. in bed 9:45pm, 3/5 ss, fell asleep around 11pm

Day 582 Sunday 5/10/15 Mother’s day

10:15am-6:30pm outdoors playing baseball. 1/5-3/5 ss during game. needed ice briefly for itch. won tournament. ride home and in restaurant: 3/5

Skin: Itchy, scratched-up feet look just like they did in pictures 1 year ago. Skin on back is soft, pebble grain-smooth. shoulders, legs, arms feel like roughened pebble grain leather

Day 581  Saturday 5/9/15:

Good night’s sleep with up x 1 2/5 ss

Scratch: baseball game 2/5-2+/5; 3/5 after game into evening. Needed ice pack for game itch. Still able to play in 80+ degree humid weather
Diet: breakfast 2 blueberry muffins, waffles, milk
Fell off the cut back on sugar and dairy wagon again. Hard to do when you’re the only one who believes in what you’re doing. Have cut back on dairy for 2 weeks. Little improvement scratch frequency with the no dairy and reduced sugar.

Night: fatigued, itchfest and emotional meltdown 3/5ss

Day 580 Friday 5/8/15

3/5 all day, including Busch gardens. Very itchy feet looks like last year. However, he had a fantastic time and did not let the ss interfere with the fun. Drove to Maryland for a baseball tournament. Asleep after 12am w/ 3/5 ss

Day 579 Thursday 5/7/15

SKIN and scratch: 1:00am Thursday morning back skin getting soft again like baby’s bottom as skin is scratched and shed. awoke to 3+/5 ss. needed help scratch + ice pack.

Sweating at 12-1am.

Late wakeup but got to school.

Scratch:3+/5 after 4:30pm-10pm. all over; itchy scalp 4-/5 without melt down.

Emotions: upset and anxious coming in from the heat; increased itching

ACV bath and moisturizer routine–coconut oil and lemongrass balm

SKIN: BACK skin: soft and smooth as baby’s bottom while shoulders, arms, BIL UEs, knees, and dorsum of feet are rough and raised with red dot abrasions. Bigger scratches on dorsum of feet but they’re not as red and demarcation BIL still there but lighter.

Day  578 Wednesday 5/6/15

SKIN: back texture this (5am) morning pebble-grain with a little roughness. Skin texture around 10pm, drier and more flaky. skin texture at 1am Thursday morning getting soft again like baby’s bottom as skin is scratched and shed.

SCRATCH: 1/5 before school and during baseball game; 2/5 in evening

shower routine and in bed by 9:45pm with 1-/5 ss.

DAY 577 Tuesday 5/5/15

Slept well thru night woke up 5:50am. 1-/5 this am. Long pants, no sun sleeves today.

SKIN: skin on back now soft and smooth as a baby’s bottom.

Still avoiding milk for a while longer.

Day 576 Monday 5/4/15  DERMATOLOGIST APPT

2/5-3/5 ss during derm appt. appt went well. She did say he had some enlarged lymph nodes–I forgot to ask where.

Spot on back of neck is like a wart, mole on right 3rd finger ok; going to try NB UVB in a month (per Brian’s choice) to see if itch will decrease by then. If not or if itch increases before 1 month done, will try NB UVB.

SKIN: dry, flaky, slight increase in shedding; decreased erythematous color neck to feet, though slight demarcation in bil feet still apparent. back skin slightly rough sand paper texture with flaking

Shower routine. ice and lemongrass balm, massage to feet/calves and acupressure points, deep breathing/relaxation due to 2+/5 itchy feet. Asleep by 10:30

Day 575 Sunday 5/3/15 CHAMPS AGAIN!

Less scratching tonight than last night though needed lemongrass balm on feet and assist w/ ss at least 1-2 x.

At the baseball fields by 9am. Played games at 10am, 2pm, 4pm, 6pm.  Won the championship. Got home by 10:30pm.

Asleep by 11pm. skipped shower due to exhaustion. Lemongrass balm to feet/knees, coconut oil to elbows.  ice for itch. 1/5 ss before falling asleep.

Day 574 Saturday 5/2/15 

3/5 to 3+/5 ss during the night, requiring help with scratching, lemongrassbalm on feet, relaxation techniques.Didn’t put our detergent-free sheet on bed. Able to wake up by 7:15am

Got to the baseball field by 8am. baseball 8-10 and 12-2pm. Started 2+/5 ss in morning and 3/5 by 2nd game. By evening, almost constant movement of hands to scratch head, neck, back, shoulders, knees belly–everywhere yet stayed focused on what he was doing.

Diet-bad-muffins, bacon for breakfast, sausage biscuit, sonic. evening-popcorn at movies, pizza inn w/ 2 small slices pep. pizza and a lot of sugary desserts. (1st time in a week that he ate obvious dairy like milk or cheese and more sugar than he’s had all week)

5/5 ITCHFEST bil feet-crying, anxiety, screaming. “feeling sick” .SKIN did’t look bad–normal color but with red dots/cuts where he was scratching/abrading skin all day. Feet dry and adherent flaky; back w/ only light shedding. Clear demarcation of red dorsum/white plantar surface in bil feet Finally calmed down after shower/moisturizer, deep breathing  and relaxation techniques, acupressure to points on feet and back. This time we put our sheet from home in the bed, and only that sheet touched his skin.

Asleep by 11pm with 2+/5 ss and ice pack.

Day 573 Friday 5/1/1 END of a VERY busy week! completed 3 projects, several tests, and 3 baseball games so far with NO massive increase in scratching PTL!

Brian is doing well functionally: back to school and activities. He is still having the full body shedding/skin, red patchy areas/full body cycling minus the ooze. The itch is still there, waking him up 1-2 x per night–so our sleep is still broken–but it is not as intense or incapacitating.  I’m hoping this summer will be like last summer where his skin was miraculously normal for almost 3 months and no itch. I believe he is still going through TSW because of the full-body characteristics, but I think his underlying eczema may be coming back, too. Very hard to tell. It’s just a waiting, watching, and praying game.

We’re going to a new dermatologist (first time in 3 years) on Monday to ask for narrowband uvb light therapy and to check out a spot on his neck. I’ve written to her ahead of time about Brian’s history.

ITCH: woke up at 1:20am and 5:30am with 3+/5ss of dorsum of feet. required lemongrass balm both times which calmed the itch and helped him sleep. Able to get to school on time

SKIN: AM: Back skin very dry, increased scratching, flaking and shedding; no more pebble grain; no redness; dorsum of feel with fading demarcation, more normal coloring with multiple scratch spots.

ACV bath and moisturizer routine after school. travel to NC for baseball tournament. Asleep by 11pm 2/5 ss.

Day 572 4/30/15 Thursday 

SLEEP: 3+/5 ss 2:30 am; up for school at 7:40am, made it on time.

ITCH: 1/5ss on ride to school. Still avoiding milk. intensity of Itch requiring constant hand movement/scratching seems to be decreased. Also no histame since ran out.

SKIN: back skin texture leathery, pebble grain with flaking/shedding

Shower routine; in bed by 1020pm asleep by 11pm. 1-2/5 ss.

Day 571 Wednesday 4/29/15

SLEEP: Up at 3am and 4:55am for  itchy feet 3+/5–> lemongrass balm/massage and ice pack. Got up at 7:43am, but got to school in time.

SKIN: chin to shin shedding fine, flaky skin; dry adherent flaking of feet/ankles;  texture of skin on his back continues changing from sand-paper texture last night to softer and smoother this morning

ITCH: <1/5 in am up to drop off at school. good spirits

DIET: Taking daily: B complex, ZN, Mg, NAC, glutathione, 4000 iu vit D3. Lycopodium every other day.

ACTIVITY: 8PM BASEBALL GAME–played pitcher, catcher and 2nd base. did fantastic at P and C, considering he hadn’t pitched a lot and this was only his 2nd time catching. <1/5 ss during play. At home 2/5-3-/5.

Shower routine; coconut oil on face-shins, lemongrass balm shin to feet/ankles.

In bed by 11:30 1+/5 ss. did usual calming routine; asleep by 11:59pm.

Day 570 Tuesday 4/28/15

Up at 4:30 am for itchy feet 3+/5. moisturized with coconut oil face to shins and lemongrass balm to feet/ankles. mupiricin to bil post shoulders and dorsum of feet due to small open areas. Doing well trying to avoid milk. drinking choc/regular almond milk. 1/5-2/5 this am

SKIN: chin to shin shedding fine, flaky skin; dry adherent flaking of feet/ankles;  texture of skin on his back continues changing from sand-paper texture last night to softer and smoother this morning

3/5 after school esp arms/back. able to wear shorts and sleeveless top in this warmer weather. baseball: catcher and pitcher–1/5-2/5 during game; 3-/5 in evening.

ACV bath with DSS x 10-15 min; rinse off; coconut oil face to shins then lemongrass balm on the itchy feet. more obvious red demarcation on dorsum of bil feel

Ice pack for feet (been using these nightly for past few weeks for itchy feet). 2+/5 ss. Deep breathing/relaxation techniques  to calm itch. IN bed by 10pm; Asleep by 10:40pm.

Day 569 Monday 4/27/15
Woke up 4:55am with 3/5 ss esp feet/ankles and required coconut oil. Light ooze smell. 7:30 am–deep annoying, intense itch in the medial border of right scapula 2+++/5 (frantic 4/5 quality but not duration) Prayed, deep pressure and point scratching, deep breathing and refocus techniques.  1/5 during breakfast and during ride to school.

Gave him 2 tsp zyrtec today for the 1st time in a while. He generally declines it, but this time took it.

**not wanting to go to school; mentioned wanted to stay home.   ??? stressed???

Quick shower this morning. Applied coconut oil to usual areas and this time coconut oil and mupiricin to dorsum of feet/ankles. feet not as erythematous as last night and demarcation not as noticeable, but still there as a slightly raised eruption.

SKIN: morning: despite deep scratching of legs and knees last night, skin remains intact. Increased shedding today compared to past several days. see skin cycling note below.

Night time:baseball game 1/5-2/5; 2+/5 at home w/ homework; shower routine, in bed by 10:30pm. asleep by 11pm

Day 570 Sunday 4/26/15

Able to be 1/5 at church until late afternoon. Had cherry slurpy at movies. we’d been doing good without milk and reduced consumption of concentrated refined sugar .  3/5 after 7 pm
Shower routine with cocunut oil and this time UNDA on itchy ankles and feet. In bed by 9:30pm; asleep by 10? 1/5 ss at bed time.

**SKIN CYCLING NOTE:  At bedtime, skin on his entire back/scapulae felt like a dry, fine pebblegrain with evident skin flaking. Within 2-3 hours, the same back/scapulae was soft and smooth as a baby’s bottom with little obvious flaking, but he was lying on a lot of shed skin. 

Day 567 Saturday 4/25/15
I worked today so, of course, my boys conveniently forgot to take the vit/supp.

Brian played in BB tournament in Yorktown today in the rain and 50 degree or less weather. He did pretty well with 2-/5 ss or less while playing. When we got in the car and home, however, he was back to 3+/5.

Skin tonight after ACV/DSS bath and coconut oil was much less red than yesterday. More like a fine mottled pink and very dry, cracked skin on achilles BIL.

1/5 ss at bedtime

Stress/comfort scratching? Hands constantly moving , it seems, but not necessarily in distress… Going to new derm next week who is open to nonsteroidal alternatives and does narrowband UVB. Mainly to look at a nodule on brian’s nape.

Day 566 Friday 4/24/15  VITAMIN/SUPPLEMENT UPDATE + START DAIRY AND PROCESSED SUGAR elimination x 21 days (Day 1)–OUT of Histame

The past few days have been about the same with an increase in the constant scratching (without distress) during the day. However, he says he is bored of school and he has a distressed wrinkle forehead, so I have a feeling school is stressing him out and contributing to the increased scratching. Will work on breathing, relaxation techniques, and talking it out/taking active stress breaks when ss increases.

SLEEP: able to fall asleep by 10 pm with 2/5 ss. Up at least 2x like 12:41 am and 4am due to scratching. Able to get up by 7:30 am and make it to school on time.

SCRATCHING: only what I see in the morning before school and after 3:30pm when he gets home from school 3/5 until bed time. He goes about his business but hands are constantly scratching chest, elbows, shoulders, low back, upper back and the very hard to reach area between the scapulae. He declines zyrtec/benadryl, stating, “I’m fine.”

SKIN: Shedding has decreased to about 1/4 teaspoon or less today, compared to the 1/2 teaspoon pictured on the 18.5 month update (4/16)

The Skin Cycle for Brian’s back seems to be: (itch is assumed) medium grit sandpaper texture, dry, and a flaky with light shedding; very dry flaky, a lot of shedding, and increased scratching; soft and smooth as a baby’s bottom, medium scratching, less shedding; soft but football-pebble grain texture, light to barely shedding + scratching

VITAMINS/SUPPLEMENTS: ran out of 30 day supply of histame which was supposed to help breakdown the histamine in food. It did not seem to decrease scratching despite our attempt at modifying diet. will not continue Histame.

NOW just on:1/2 tab Vitamin B complex plant-based, magnesium, zinc,  glutathione, N-acetyl cysteine (NAC), histame,  vit D3, and lycopodium

Day 563 Tuesday 4/21/15

Fell asleep before 10pm past 2 days but up at 11 both nights and again at 2am, scratching 3+/5 to 4/5  until 4 am. Skin didn’t look bad though, considering how hard and how much he scratched. Experimenting with just 1 shower/bath a day instead of 2x/day.  Possibly all the milk he drank yesterday plus cereal around 6pm? We had been limiting milk to about  a cup a day. I think he had at least 4 cups just yesterday afternoon/evening.

DAY 560 4/18/15 Saturday

No DSS last night just shower. 3/5ss and lots of shedding for at least an hour up until he fell asleep. I’ve been helping him settle in for the past 5 days by doing acupressure on LI 11 and along spine but keep falling asleep there. Thankfully, he’s my alarm clock and wakes me up with scratch or water request around 4 or 5:30 am. Definitely sleeps better when parent is alongside (and so do I.)

SKIN: very flaky; at night you can feel the heat radiating from body. thankfully, no soaking night sweats/ooze this week–just very light sweating or subtle dampness of skin when under the covers.

SCRATCH: 2/5 to 3-/5 yesterday–not frantic and incapacitating, just constant

Day 558 4/16/15  Thursday

Tried 1 cut Dead Sea Salts (DSS) in ACV bath tonight. Soaked for about 10 minutes and showered. at bedtime he had 0/5 ss up until he fell asleep. He’s generally a 1-2/5 when settling in to sleep, but mo wiggling or hand motion tonight PTL!  Could be because he was very tired…

Day 557 Wednesday 4/15/15  Tax Day!

Since 4/3,  about the same daily:

SCRATCH/SLEEP: 2-3/5 ss during day; asleep by 10:30p, up by 7:30am with 1-2 night wakings (1, 3am or 2, 4 am) due to 2+/5-3+/5 ss. Night sweats/soaking the sheets on 4/13/15 (day 555). Relationship btwn stress and scratching

Skin: cycling-dry, sandpapery, small abraded areas, cracked dry skin; face usually fine; still shedding full body at least 1/2 tsp or more per night

Energy/function-good except the scratching is more constant during day–or at least constant “self-soothing” as ND would say.

See 18.5 month update for details and pictures.

Days 553 and 554     4/11/15-4/12/15  SEE Posts in April

Day 545 Friday 4/3/15 Good Friday

Skin dry but looks pretty good after shower routine and moisturizing.

Day 544 Thursday 4/2/15 Holy Thursday

Past 2 nights Brian has been up at least 2 times( 1am/3am and 2am/4am) with 3+/5 itchfests on feet, needing coconut oil and accompaniment to calm. Feet look just as bad as they did this time last year. scratching or selfsoothing 3/5 during day or just constant moving of the hands even during eating and baseball/other activities. Science teacher says he has been having increased/digging/scratching in class.

Looks like he’s getting “red sleeves” at dorsum of foot; somethines pinkish hue-full body afte showers. during day, upper lip is dry, red and flaky, hands are pebblegrained texture with multiple scabbing slits or cuts from scratching. Back varies from soft and smooth as a baby’s bottom to sand paper dryness. Face still great.

Despite the disrupted sleep, dry, itchy, shedding skin, my little warrior trudges onward. God bless him!

Got a dermatologist appt 5/4 to try to do NB UVB and to look at a raised spot on Brian’s back.

Baseball practice.Shower routine, fell asleep easily.

Day 542 Tuesday 3/31/15

Up at 2:30am 2/5 ss; coconut oil to itchy back and feet;  slept til 7:15am. shower routine, vit/supp, got to school on time; 1+/5 Good morning.

Won blue ribbon and a medal at his first official science fair!

Day 541 Monday 3/30/15 (pictures of feet/knees)

Awoken at 2:30am; 2/5ss; lemongrass to itchy feet

Skin:dry, flaky, shedding still; increased dried cuts on feet/ankle

Histane in am; forgot Zn; 2/5 after school; went to baseball game and batting lesson. 5+/5 itchfest around 8pm feet badly itching, just like last monday. found blueberry muffin wrapper on counter. Spanish and Social Studies tests tomorrow

ENERGY: reporting “tired” more often for the past 2 weeks. ? because he still has a cold since 3/18/15 or because of stopping TCM, which he claimed at the time gave him more energy. Original Quell the surface and er chen wan (1/30/15) increased night sleep but also came with increased daytime scratching.

***I think last Monday’s and tonight’s 5+/5 itchfests are manifestations of stress from having 2 tests the next day (same situation last monday) for which he has questionably prepared and at the last moment trying to get it all in.

Day 540 Sunday 3/29/15
Cold. finally get to play baseball! good day –got a hit on 1st at bat; 2/4 today.

SCRATCH: 2+/ to 3/5, even during the baseball game (while playing 2nd base)

coldstone after games. exhausted. shower routine and asleep by 9:34pm.

Day 538 Friday 3/27/15
1:30 am: Awoken with hard sleep scratching 2+/5; stopped with lemongrass balm massaged onto arms, elbows, itchy areas. Up again at 4am hard sleep scratching.

2+/5 ss no am shower routine past 2 days, just pm, but continued with coconut oil moisturizing.

powdery dry skin, red-dotted and roughened from scratching

Day 537 Thursday March 26, 2015  ND Appt f/u
awakened by itchy feet–>UNDAs–and need for h2o 230am; 1/5  ss

Went to ND today. Started on Histame to address DAO defect, which hinders body’s ability to get rid of histamines. also lycopodium for constitution. Haven’t been back since Dec due to her illness.

2/5 at ND; 3/5 during evening; skin-red dots from scratching

shower routine; 1/5 bedtime

Day 535 Wednesday 3/25/15
Awakened at 1, 3 and 5am for 1+/5 ss; 1/5 to 2-/5 during evening

Says he feels more tired lately. Has had a cold–nasal congestion, runny nose for about 7 days now.  he seemed to sleep better and have more energy with TCM?

ACV bath coconut oil; bag balm to feet/ankles–small cuts again from scratching; mupirocin to open areas
Day 535 Tuesday March 24
OOB by 7:30am shower routine, coconut oil; bag balm on heels and feet–patchy red, scratched up again, including achilles– from last night’s itchfest
Scratch: am: 1/5 with greasing-2/5, thankfully

SKIN: prior to shower: chalky, flaky dry like the Sahara–emphasizing hydrate and moisturize–falls to deaf ears

Diet: B applesauce w/vit/sup, lemon H2O, PB on potato roll; L: apple, H2O, samoas; beef n broccoli, rice

shower routine. In bed by 9, asleep by 10. calmer tonight w/ 2/5 to 1/5 ss at bedtime. he said he’s more tired.

Day 534 Monday March 23
OOB by 7:30am.

SKIN: Powdery dry especially posterior neck. 3/5 ss this morning–constant moving hands. declined benadryl or zyrtec.

shower routine, coconut oil; bag balm to bil achilles and dry patches on feet. The dry achilles cuts have closed!! That bag balm is really something! May need to start using it on the dorsum of his hands.

Diet: B:applesauce w/Vit/Sup; h20; oatmeal w/unsweetened almond milk and 1 T maple syrup; hot lemonade  (8-10 oz hot water, 1/4 lemon, and 1T honey). L: cheese stick, apple, H2o, mini blueberry muffins, traded something for fruit snacks, pretzels. S:mandarin oranges, pizza rolls, milk D: samoas, ???

BAD evening/NIGHT: 5+/5 ss, crying, emotional, “I just want the itch to stop! Why won’t it stop?” first itchfest like this in a loooong time Shower routine/coconut oil, etc.. Hubby took the evening shift cuz I had to sleep. I don’t know what happened after my head hit the pillow.

Day 535 Sunday March 22, 2015
Baseball practice and scrimmage today. Good at-bats with hit, walk, pop fly out; good plays as 2nd baseman. Out in sun most of day. Used coconut oil on face for sun protection–forgot the neck and it was a bit rosy at the end of the day.

SCRATCH: 2/5 during game

ACV bath, shower routine; Asleep by 10:15

Day 532 Saturday March 21, 2015
awakened: 5:30am for scratching
SKIN: very dry and flaky/shedding. applying bag balm to cracked achilles bil x2 days, and today they look better, closing cracks.

shower routine-bag balm to ankles. mupirocin to open areas

SCRATCH: 2+/5 to 3/5 thru day/evening. used ice packs for itch and he said feet stung after shower. hubby says less scratching today while actively playing. previously he’d continue to scratch 2+/5 with activity and 3 to 3+/5 without activity

activity: outside a lot today

diet: yesterday fried fish for dinner; today: chickfila; blueberry muffins, organic whole milk, samoas, hotdog, vitamins w/applesauce (able to take whole capsule in a-sauce PTL), barbq, onion rings

shower routine; asleep by 10:45pm

Day 530 March 19, 2015  Start acupressure LI 11 more regularly–at least 3 minutes 3-4 x/week (Dr. Lio Chicago Eczema)

Day 529 March 18, 2015 –has a cold; TCM review

Awakened 4:30-5am: 4-/5 sleep scratching; application of lemongrass balm to dry, cracked L wrist calmed the scratch. asleep. for now. Shower  routine 7:30am.

Diet: Applesauce+vit/sup; h20; milk w/ zone bar; orange, pistachios, pitachips; choc almond milk; water; S: pot roast; almond milk; D chik fila nuggets, fruit, milk; Zn

Skin: dry, cracking esp dorsum of hands at creases; small open cuts over BIL shoulders and proximolateral scapulae due to hard scratching. back smooth and soft this morning (last night it felt rough and pebble-grained.) Face smooth and clear PTL.

Scalp: very dry and flaky again this morning

TCM: has been off TCM for about 13+/- days now. I wanted to get him back to a baseline without them to assess symptoms. Still trying to decide if we should restart them because it does seem he was sleeping thru night with er chen wan and quell the surface for the 1st 2 weeks of use. Then there was the increase in day scratching, so we went with 2 weeks Quell the surface and switched to Jian Pi Wan, which resulted in no decrease in the say scratching.  hmmm

2+/5 after school; baseball practice

hot packs and ACV bath +coconut oil and lemonbalm; 2+/5 to 3/5 ss . lights out 10:30pm; pressed on LI 11 acupressure point and he fell asleep  quickly by 11pm.

Day 528 March 17, 2015  Happy St. Patrick’s Day!

Awakened at 4:15am for scratchy feet; bad cold but able to get downstairs by 7:30am and to school on time.

Diet: B: oatmeal, milk, maple syrup, turkey bacon, applesauce w/ vit/supp, hot lemon/honey. L: choc almond milk, pistachios banana, mandarin orange S: potatoes, carrots, pot roast, h20, Zn; ice cream; D: same; choc almond milk

Scratch: 3/5. Tried kineseo taping along bil paraspinals and occiput to inferior border of scapulae bilaterally to see if it would decrease scratching via counter irritation. Seemed to work for about 1.5 hours, but he ripped them off when he said they “got hot and stinging” after he ran around outside to play. 70 degrees today.

Hitting lesson. Out with dad. Shower routine.Benadryl

Day 527 March 16, 2015 START FOOD LOG AGAIN

Up at 12am, 3am 7:20am; shower routine, coconut oil, lemongrass balm; vitamins

Scratch: 3/5 day time

Diet: B-applesauce w/vit; milk, oatmeal w/ 1 T maple syrup;, turkey bacon; L: clementine, chips, pita, h20 Snack: banana w/PB, milk; D: pot roast spud

Fatigued after school, took nap; developing a cold with cough and nasal congestion. Lots of tests and work due at school. Doing well keeping up to date or ahead.

Microsilk routine. moisturize + mupiricin; vick’s rubbed on chest. Lights out 9:40 but unable to sleep until 11 due to itching, and nasal congestion (can’t breathe); icepacks, lemongrass balm, coconut oil, massage, deep breathing, prayer; 3+/5 ss

Days 522-526 increased scratching during the day–almost continuous movement of hands. stress or habit scratching? very itchy (3/5 to 3+/5 during awake hours)waking up at 11pm, 1am, and 4am and needed help scratching, H20 to drink, and coconut oil.

Skin/itch: appears to be getting faint red sleeves again in arms and legs at night; back is incredibly smooth to the touch but itchy as usual; skin on knees look better, fewer cuts. worst areas are dorsum of hands, feet, and ankles: dry, flaky, red, eczematous patches that are 4/5 ss

Alternating between microsilk tub and acv baths for infection control. continue with coconut oil, lemongrass balm for moisturizer and mupiricin on open areas. Using ice and balms, massage, ddep breathing and relaxation techniques, pressure points, assist him w/ scratching for itch relief.

TCM– last of TCM 7-11 days ago. It appears that the night scratching, sweating, and daytime scratching has increased since last TCM pills were taken. ? start TCM again?

Diet: Bad night yesterday evening with emotional breakdown, crying, verbally asking why? and complaining about being itchy. Hasn’t done this in months. Will cut down on refined sugar, try to decrease dairy

Sleep: at least able to fall asleep between 10 and 11pm; unfortunately, itching wakes him and me up around 1, 3 and 5am. Still able to get to school in time. waking earlier (7:25ish) than a few weeks ago.

Days 519- 521very itchy (3+/5) during sleep hours, waking up at 11pm, 1am, and 4am and needed help scratching, H20 to drink, and coconut oil.

Day 518 Saturday 3/7/15

Night SKIN: neck to waist patchy red like the pictures of people with hives or urticaria. Outer arms., forearms, and dorsum of hands were affected, too. Knees/legs not bad. Ankles and proximal dorsum of feet with patches of dry, itchy red.

WORST erythema/hive condition his skin has been in a while, but this erythema is different from the early TSW full-body redness. Seems it may be related more to the cold and low (<35%) humidity and stress: he was freaking out about “all the things he had to do.” Calmed him with deep breathing and talking through tasks.

ITCH: 2+/5 during movie and at bedtime–wasn’t really bad considering how hive-like his skin looked PTL.

ACV bath prior to movie, coconut oil

Bedtime: mupiricin on open areas on shoulders, elbows, hands, and ankles; coconut oil

Asleep by 10:30pm as usual with icepack for itch and no itchfesting despite appearance of skin PTL!

Day 515 Friday 3/6/15 Snow Day

A year ago today, Brian’s pictures showed clear skin on hands, neck, face, and chest but horrible itchfests and still messed up clock. Today, his skin is in a flare that has steadily worsened since october 2014.

itch during day: 2/5 and 1/5  to 0/5with activity

skin: rough, dry, speckled with red areas? skin infection

Night: microsilk tub; restarted mupiricin on open breaks in skin, topped with coconut oil. rediscussed importance of preventing infection/killing staph

Day 516 Thursday 3/5/15 snow day

2/5 ss during day (working on a project) and 3-/5 at night.

Skin: during day, slight uniform erythema of neck. by 10 pm: neck to waist non blanchable or quick-refill erythema, raised erythematous patches on arms and dorsum of hands; rough skin all over; dry skin and scabbing  to small open cuts on elbows, knees, and those blasted ankles again.

Ooze: steamy hot at night with some ooze smell; sweating not soaking the sheets like the other day.

ACV bath last night. May need to take one daily or switch to bleach bath briefly just to kill staph that may be exacerbating the itch.

May switch back to er wan chen and drop ji pian wan

Day 514 Tuesday 3/3/15

Woke up with 3+/5 ss at 1am. I applied cold packs and assisted with itching. Checked his bed and the sheets were soaked with sweat? though smelled slightly oozy. Getting a bit frustrated and disappointed. Itching more, rashy looking skin, short itchfest on bil feet this morning before school. open scratches around achilles tendons and dorsum of feet. emotional.

Afternoon and evening: “allergic shiners” above bil eyebrows. Admitted to slightly increased itching.  Been very slack and haphazard with TCM–>questioning their effectiveness, though Brian says they help (obviously not well enough for him to not forget them)

A’s and A+s on interim again. Excellent batting practice. Good attitude with respect to increased itching. 

Even requested ACV bath–> red patchy rashy neck to ankles; 3-/5ss in bath

lemongrass balm and coconut oil for moisturizer

Day 512 Sunday 3/1/15
ITCH: very itchy night last night according to the hubby. No TCM or vitamins taken yesterday day 511 because I went to work and wasn’t around to force the issue.

Day 510 Friday 2/27/15
2 doses of tea pills; 2/5 ss; dry and flaky

Day 509 Thursday 2/26/15 Started TCM again 2 doses, continue with vitamins. SNOW DAY sleep over at friends. 2/5 to 3-/5 ss

Day 508 Wednesday 2/25/15  No TCM today, just vitamins in am)

woke up with 2/5 ss; oob; increased visible dryness face, neck trunk; upper lip; increased erythema face, neck, hands, and back at night. flaky dryness 2+/5ss.

States he would like to restart TCM because it helps him sleep better. took 1 dose after school. shower routine.

Summary: went 5 days without TCM because it seemed he was scratching more during day 3/5 to 3+/5 and was powdery dry.   First 3 with days much less day scratching 1/5 to 2-/5. and slept in bed all night 3 of the 5 days.  last 2 days, 2+/5 ss, OOB 2/5 days, and increased flaky dryness and erythema of face.  Will restart tea pills or zinc?

Day 507 Tuesday 2/24/15 No TCM today, just vitamins in am

Woke up 4am asking for ice water; increased erythema 2/5 ss; oob

Day 506 Monday 2/23/15 (No TCM today, just vitamins in am)
Awoken at 7:25am, shower; coconut oil; back to school. 

Humidity: around 21-33% in house; 40% in crawlspace due to b-dry unit.

SKIN: fewer obvious cuts but some spotty erythema on back ; mild flaking on the sheets

Scratching: 1/5 this morning!

THOUGHTS: decreased scratching and obvious dryness past 2-3 days. Held TCM x3 days and vitamins x2. added vit. back today. Could tea pills–quell surface and/or jian pi wan–have been causing the increased dryness and scratching the past week? the Jian Pi Wan is supposed to help with decreasing inflammation in the gut, whereas the quell the surface is supposed to address the dampness/heat. Maybe it’s drying out the dampness too much, resulting in increased dryness, leading to increased scratching? Possibly. Will go a few more days without the TCM. reassess, then possibly add back the jian pi wan. If he is doing great (1/5 ss, full night’s sleep in own bed, good energy) may d/c tea pills.

ENERGY: while on TCM since Jan 30, energy has been excellent. Will monitor energy (self report, parent observation) while he is off TCM

Day 505 Sunday 2/22/15 (took NO vitamins nor TCM today)
SLEEP: Able to sleep in bed all night; no beddings on the ground. Tired from all the snow activities this week and late nights? Awoken at 11am.

No shower just coconut oil. Skin with fewer obvious cuts.

1/5 to 2/5 ss today. Play with friend; 2 hour baseball conditioning. 2/5 after conditioning and before bedtime.

Hands much less active tonight.

Lights out 10pm; asleep by 11pm. Hubby filing Brian’s nails daily or at least every other day.

Day 504 Saturday 2/21/15 Snow, rain, cold (took NO vitamins nor TCM today)

Lights out 11pm last night; up 1:30 and 3pm this morning 2+/5 ss. I worked today so Brian skipped all his vitamins and TCM. Interestingly enough, he was no worse–and may have been a bit better itchwise today–than past 2 days. 3/5 ss.

Activities: homework; basketball game

Shower routine. Lights out at 12am (movie marathon)

Days 502 and 503near constant scratching 4-/5 even during activities, but no looks of distress, just scratching away, laughing, or carrying on a conversation or watching TV. He says itch isn’t worse but his constantly moving hands has me wondering….3+/5 at bed time. However, he has been able to stay in his bed all night the past few days without tossing off his covers. may be just fatigue from all the playing in the snow.

day 503 (friday) ACV bath coconut oil/lemongrass balm routine

Day 501 Wednesday 2/18/15 Another snow day

Stayed in bed all night; 4-/5 ss during day. no itchfests, just constant movement of hands scratching or rubbing, elbows, wrists, knees, etc. Reduced milk to 1 cup/day for LENT.

Big difference from yesterday.

Snow play again. 4-/5 to 5-/5 ss during evening–continuous, and no reminders have helped him stop scratching

scratched areas on knees again. bil feet/ankles itch–>patches of erythema?

Day 500 Tuesday 2/17/14 SNOW DAY!

Past 2 nights able to sleep in own bed all night. Covers stayed on which indicates he wasn’t tossing and turning like usual.

Skin: ? decrease in erythema?; facial skin good; skin on dorsum of hands pebble grained/thick  but ok; light shedding; dry; upper lip much less red and flaky. Significantly fewer, if any, cuts from scratching especially on knees and elbows

Itch/scratch: he says he may be less itchy; ability to stay in own bed with covers intact (not on the floor) indicates this; but during the day his hands are often moving to rub or scratch his arms, legs, back. He says he’s not itching, so is it habit or nervous scratching? Trying to remind him of the deep breathing, calming technique “calm hands” with varying results.

Diet: still drinking 1-3 cups of milk/day. we’ve been more mindful of quantities. Ate egg yesterday with no immediate change in skin or redness.

smooth, red, wind-burned cheeks at night. lights out 1030pm after shower/moisturizer routine.

Day 498 Saturday 2/14/15
Woke up saying he slept well and felt great: less itching despite chalky dryness. Fewer open scratches noted on elbows, knees (anterior and posterior). Went to friend’s house for 6 hours 3/5 afterward. after shower, skin on neck, trunk LEs/UEs with red slightly raised rashy appearance–not excessively itchy. 2+/5 ss at bedtime, reminders to do deep breathing.

Day 497 Friday 2/13/15
Out of bed around 1:30am ss 3/5.  still a little flaky red upper lip but improving.

Day 496 Thursday 2/12/15
Jian Pi wan + quell the surface 6 teapills 3 x/day each herbal; same vit and supplements except have not restarted zinc or B6 yet due to too many items to ingest and not enough waking hours to spread them out. Want to see how his skin/itch respond to this change first.

Switched from e chen wan to this: Jian Pi Wan 2/11/15 10pm

Switched from e chen wan to this: Jian Pi Wan 2/11/15 10pm

IMG_1445

AM: increased dryness head to toe esp flaky upper lip (with redness), neck back–powdery dryness like chalk falling off chalkboard. After school flaky , dry red upper lip, chapped lips, erythematous neck with powdery dryness; elephant skin on dorsum of hands.

Scratch/itch: am–1/5; after school 1/5

Day 494 Wednesday 2/11/15
Changed to Jian Pi wan + quell the surface for 3rd dose. blanchable erythema upper body and arms/neck. ACV bath shower routine

Day 493 Tuesday 2/10/15 Day 11 TCM
Brian is on his last day or two of the er chen wan and quell the surface. Here’s what we’ve seen over the past 10 days:

1) Increased scratching during the day, even during basketball games and conditioning workouts (3/5 to 3+/5 rather than 1/5 to 2/5)

2) He says the itch is not better but not worse, either

3) 1 incidence of bad night sweating with wet sheets

4) Past 3 nights, he has been able to stay in his bed the whole night. He used to wake up around 12, 1, 2, or 3am scratching hard and coming to our room

5) Still dry and flaky skin with shedding, but not worse

6) tonight he was able to play basketball in 33 degree weather for 1/2 hr with a friend. he wore only a long-sleeve shirt and jogging pants. He was not cold, he told his dad. This is a far cry from last year, when he was homebound, 3/5 to 4/5 scratching all day; 5/5 ss at night until 1:30 am, and had insomnia.

7) Skin with faint rosy hue lately. In the evening–especially tonight– it’s like a mild full-body blanchable erythema

8) Upper lip still flaky and dry/some redness

9) ankle eczematous patches dry and flaky

Praise the LORD for healing.

Day 491  Sunday 2/8/15
Scratching: 3/5 to 3+/5 during the day, even during activities like basketball and baseball conditioning; 1/5 in church.

Skin: multiple small open scratches  on shoulders, elbows, forearms, back, thighs, knees due to scratching; dry eczematous patches bil ankles; neck skin with faint erythema

faint pink hue to skin; mottled red/heat rashy looking back after shower (likes hot water, duhh)

ACV tonight as well as 2/17/15.

Disappointed that there has been no decrease in scratching despite 3x/day TCM herbals. 2-3 more days left. He has been able to sleep in his own bed longer, so maybe increased sound sleep vs less night scratching? Will start zinc. Wednesday.

Need to be thankful: Obviously getting some sound sleep since he has been able to do very well in school. Function, strength and energy improving. Muscle definition returning esp in trunk and lower extremities. Look beyond the skin and itch….

Day 487 Wednesday 2/4/15
UP at 12:30am–sheet/comforter soaking wet from odorous sweat. 3+/5 ss; water, moisturize.

Skin stinging and painful from all the scratching last night; screaming in shower when water hit skin. painful, forearms–worst discomfort in 8 months 😦

A little better after school. ice cream. batting practice–did great

Day 486 Tuesday 2/3/15
Up by 7:30am; good day at school, batting, play w/friends. 2+/5 ss. ACV bath + coconut oil and lemongrass balm. lights out 10:00; asleep by 11pm. Missed one TCM dose

<1/8 tsp flakes

**took only 2/3 doses of TMC.

Day 485 Monday  2/2/15
Fell asleep after 11pm last night after shower routine, coconut oil, lemongrass balm. used ice pack for itch. 2-/5 ss .Able to stay in bed all night. Awaken at 7:25am; school by 8:10am.

Diet: Vitamins/supplements in applesauce am; TCM  herbals 3x: after school, after dinner, before bed (in applesauce)

Milk/zone bar bkfst; ? lunch; milk, graham crackers, smoothie (oj, straw/blueberries, banana, spinach), chicken n dumplings (tiny portion)

Skin: am:slight sweat/ooze smell without the ooze; some shedding, flaky, dry, scattered erythematous patches over shoulders and back, misc small cuts from scratching. pm: dry; red, raised, eczematous patches over dorsum of hands, wrists, fingers, l>r; slight rashy appearance shlders, back, neck. right ear with cut at bottom where it attaches to head.

Itch: Seems to have calmer hands today 1/5  to 2-/5 after school and during basketball game.

Need to do ACV bath tomorrow. glass of water. Asleep by 11pm.

Day 483 Saturday 1/31/15

Sleep: fell asleep at 10 pm last night; up 3+/5 scratching 4:30am–>very dry and flaky–>I spritzed elbows, hands, knees with water and moisturized with lemongrass balm and he fell back to sleep. Awake around 9am.

Skin dry, flaky, 3-/5ss

Itch/scratch: 3+/5

Day 482 Friday  1/30/15 Start Traditional Asian Medicine (TAM or TCM) 2 wk Trial   “almost 16 months” Photo update–with flare since Nov/Dec 2014

Brian’s skin ‘s been in a flare most of December and January, with the cold and low humidity making things worse. Pictures follow.

Primary problems: 1)Itching/scratching 3/5 to 4-/5; night scratching and getting out of bed 1-3 times 2) dry, flaky, shedding skin 3) occasional night sweats 4) occasional skin stinging with heat/sweat 4) moving, rashy erythema on various body parts 5) eczematous patches on bil hands/fingers, wrists and around bil ankles 6) broken sleep due to scratching

Appt with licensed acupuncturist  today whose Traditional Chinese Medicine (TCM) or Traditional Asian Medicine (TAM) diagnosis was damp heat eczema, consistent with our ND’s dx. Internal and external heat and damp. Objective is to dispell the heat and cool/moisturize internal and external.

RX: Along with Magnesium, (**Zinc,) B complex, NAC, Glutathione, Vit D3, and Vit B6 from ND and pediatrician, added Herbals (below), fix diet–duh…may try acupuncture later if Brian wants to do it.

**Zinc-out of this; will restart it once TCM effects are observed or after 2 weeks in order to determine cause-effect better.

ITCH relief: spritz water on dry, itchy area and moisturize with organic, unrefined coconut oil and/or the home apothecar’s lemongrass balm

Diet: Avoid fried, greasy, spicy foods, processed sugars, white flour/bread–basically everything we like to eat.

Herbal: 3x/day: 6 pellets Er Chen Wan and 6 pellets Quell the surface, taken at least an hour away from other vitamins and supplements dosed according to his weight: 83#

Click or double click on images to enlarge.

Quell the Surface and Er Chen Wan 1/30/15 TCM/TAM

Quell the Surface and Er Chen Wan 1/30/15 TCM/TAM

IMG_1436 IMG_1435

BASELINE

Sleep: fell asleep at 10:17pm last night; up 3+/5 scratching 3:45am–>very dry and flaky–>I spritzed elbows, hands, knees with water and moisturized with lemongrass balm and he fell back to sleep. Up at 8am.  Broken sleep nightly due to awakened by scratching and dryness.

Symptoms: soaking wet sheet from night sweating (probably 3rd time this month) faint odor

Labwork:  Pending–taken 1/29/15 at pediatrician’s

Itch/scratching: he says 2/10 itch; I see hands moving /scratching at rate of 3/5ss; itch increases with physical and mental stress.  Back to mindless scratching. Even when we remind him to do the Dr. W techniques, he ignores us. Spritz and moisturizer (lemongrass balm or coconut oil) helps calm it, but he won’t initiate it.  so frustrating….

Skin: (see pictures) flaky, dry, some open cuts from scratching; shedding 1/2 to almost 1 tsp flakes

energy/function: great–CBG-straight A’s both 9 weeks; now playing basketball, conditioning for baseball, and working on running form + exercising regularly

emotional: pretty happy kid but still off and on emotional, but is that TSW or being a 6th grader?

1/30/15 Day 482 TS-free almost 16 months

1/30/15 Day 482 TS-free almost 16 months

IMG_1394IMG_1407

Dry upper lip 1/30/15

Dry upper lip 1/30/15

IMG_1396 IMG_1397

Eczematous patches 1/30/15

Eczematous patches 1/30/15

IMG_1408

Day 482 1/30/15

Day 482 1/30/15

IMG_1410

IMG_1426IMG_1427

Left shoulder scratches 1/30/15 Day 482

Left shoulder scratches 1/30/15 Day 482

IMG_1428 IMG_1425

IMG_1396

IMG_1422 IMG_1430 IMG_1421

IMG_1416

Right foot eczematous patch 1/30/15 Day 482

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IMG_1432 IMG_1431

This will clear up by summer time.

Day 481 Thursday 1/29/15

Asleep by 10:17pm last night. 3+/5 ss at 3:50am; I spritzed his itchy elbows, hands, and knees with water and moisturized with lemongrass balm–>fell asleep by 4:30am.

Able to get up by 7am to get to school. Great day. Visit to Dr. Blakey for f/u eczema check and to get baseline blood work before starting TCM. 0/5 ss while playing ipad, continuous light scratching/ constantly moving hands when Dr. Blakey came in.

Day 480  Wednesday 1/28/15

Night time skin after shower: fine lightly raised rash neck/back; bil hands and fingers dry, red a little swollen, eczematous

Day 479 Tuesday  1/27/15  Snow Day!
Scratched all last night 3+/5 every hour or two. Up around 8, hmwk, out in snow 11-4pm; dryness and flaky upper lip–did fine.

2+/ 5 during evening. Dry, flaky, shedding in morning. PM: Eczematous patches; hands red pebble grain; slight, faint redness head to foot, misc cuts on hands, elbows, forearms, shoulders, knees from scratching. Energy and function still very good.

Pear juice, shower routine ( shower + coconut oil/lemongrass balm); lights out 10pm.

Day 478 Monday 1/26/15
Bad weekend for scratching 3/5 during the day, episodes of stinging in back and chest skin returned briefly during baseball practice. very dry, flaky, still shedding a lot. No pear juice past 3 days. dorsum of Hands/knuckles/fingers red and patchy, left worse than right. small open cuts on knees and elbows again.

Didn’t take vitamins and supplements Saturday or sunday morning and he scratched almost non-stop. gave him the supplements/vitamins around 535pm Sunday, and his scratching decreased. coincidence?

pear juice; ACV bath; lights out 10:00pm still awake around 11pm

DAY 475 Friday 1/23/15

Able to stay in own bed but woke up soaked in sweat again, despite pear juice last night. oozy smell is back. This evening during baseball practice, chest began to skin again.  Seems to be getting cold easier, too.

Day 472 Tuesday  1/20/15
Did not do day 7 (sunday) of pear juice and none yesterday either. Brian had 3/5 ss and sleep scratching all night long. Finally fell into a sound sleep at 6am.  Will restart pear juice concoction today and see if it makes any difference in the night scratching.

Despite hard-sounding scratching, skin is not as bloody and cut up as I would have anticipated. still has small cuts on ears; forearms; shoulders, but overall posterior elbows and anterior/posterior knees look better than they have in a while. fewer cuts.

Great day at school again 1/5 to 2/5 ss, no cavities at dentist. Dry upper lip and lots of fine skin flaking/shedding with scratching head/neck. Batting practice tonight + basketball.

ACV bath, coconut oil; lemongrass balm on knees. bil dorsum of hands and fingers thickened, pebble grain skin, eczema-type redness and patchiness. 0/5 ss with drawing and reading. skin with fewer cuts tonight.

Pear juice restarted 🙂 to “dispel heat” decrease dryness and night itching–we’ll see. Worked somewhat before.

HANDS: morning skin on dorsum of hands/knuckles looking like red roughened eczema patches; both sides of wrists also have “bug-bite-like” red raised spots. Hands/wrists itching a lot.

Day 471  Monday 1/19/15  Martin Luther King Jr Day–school out

Up late 10:30am; played at friend’s from 11:15 to 3:15pm. I gave him 2tsp zyrtec before going because friend has pets and Brian is allergic to cat dander. did well; didn’t need to take benadryl while he was there; skin looked no worse than when I dropped him off.

Shower routine; Lights out at 10 but unable to go to sleep. 1/5 to 2/5 ss. Sleep scratching 3/5 all night.

Day 470 Sunday  1/18/15
Up at 10:30 am; rainy; played at friend’s house. Did 1.5 hrs baseball winter workout and no stinging, despite the sweating!! PTL!!   ACV bath at night

Day 469  Saturday  1/17/15  Day 6 Pear juice
In own bed til 7:35 am; slept in til 11

3/5 at basketball game even while playing (4:30-5:30pm); flaky upper lip; patchy red. itchy but doesn’t look anxious.  calm hands while watching tv. Despite my observation of his constantly moving hands to scratch, Brian says he wasn’t itchy at all. He did not realize he was scratching arms, legs, belly, back? Maybe habit scratching again and need to incorporate Dr. W’s techniques.

shower routine, coconut oil, and lemon grass balm

Day 468  Friday   1/16/15  Day 5 pear juice
Able to stay in own bed; sweating this a.m. flaky/shedding; 2/5 ss; evening: eczematous red patches on dorsum of left hand and some on right. Good day.

ACV bath

Day 467 Thursday  1/15/15 Day 4 pear juice
2hr delay for school. stayed in bed all night last night. less flaky today, no shower needed. 1/5-2/5 ss when home. pear juice taken before shower

2/5 at bed time. shower routine. lights out 10pm. deep breathing, relaxation, therapeutic massage to had, posterior neck, shoulders to relieve stress and tension. ice pack for itch. asleep by 11:12pm Skin less dry and flaky tonight. left dorsum of hand and fingers fine pebble grain, red. not asking for water tonight.

Day 466 Wednesday 1/14/15
3rd day of pear juice. Very flaky, took shower, lemongrass on cuts and itchy areas, coconut oil on dry areas. cuts on left ear where it attaches to head.

2hr delay for school due to icy roads. Then school closed. Had friend over to play. good day then emotional outburst looking for book. I think this must have triggered a major flare because after his shower, he looked like he had broken out in hives on his back, shoulders, forearms , and especially raised eczematous patches on his hands, esp the left one. Left fingers were rough, red sausages.

ate junk today; too much sugar/milk. did get in 3rd day of pear-celery juice. will make appt of TCM when I get the chance. ice for itch at night.

Worked on deep breathing, acupressure points. Therapeutic massage for legs. asleep by  11:30pm. 3/5 ss at bed time (1/5 during day, 3+/5 during evening)

Day 465 Tuesday 1/13/15 
Sore, but not debilitating and hobbling. no c/o soreness from sunday workout. skin super dry and flaky. took shower then lemon grass balm and coconut oil. 2nd day of pear juice taken after school. skin above lip dry and flaky/chapped. 0/5 ss during batting lesson in pm. eating another pear a day. lights out 9:45, asleep by 10:20pm

Day 464 Monday  1/12/15  **1st day of TCM pear juice
up at 1:15 am; back to sleep by 2:30 am. Able to get to school on time. 1/5 ss this am. a little less flaky
great day at school; not sore yet from yesterday’s workout. 1/5ss during afternoon and 0/5 ss watching movie

TCM 7-day pear juice trial for dry-heat eczema:

100 g celery    150 g asian pear   1 tomato  1/2 lemon—juice together, add ice, drink 1/day

Brian liked it. Tart and tasty

Day 463  Sunday  1/11/15 First day of Baseball winter conditioning!
Awakened at 7:40 am; close to 1 tsp of shedding last night. Able to stay in bed. great day with running, playing, basketball game, then 1.5 hr baseball winter conditioning at night. I remember this time last year, Brian wore long johns shirt and pants underneath jogging pants and his  arms and hands were wrapped to prevent stinging; he had cuts all over his neck arms and face and scratched the entire time the coaches were talking. his endurance was low, running was slow and labored toward the end, and he cried at the very end due to the stinging, itch, and pure fatigue.

This year he was able to pay attention the coaches with 1/5 ss. He wore shorts and short sleeve shirt with removable arm sleeves. He was able to do the conditioning with good form, batted well, and ran the mile well. His function was much better than last year, but he sweated a lot. Unfortunately, this caused his skin to sting and burn, bringing tears to his eyes. He toughed it out, however, and completed the 1.5 hr session despite the pain. After getting out in the cold air and cooling down, getting some food. He was back to his cheerful, happy self.

Shower routine, lemongrass and coconut oil for moisturizing, book, and bed. lights out around 9:30pm; fell asleep around 10:15pm.
Day 462  Saturday  1/10/15

Stayed in bed all night but 3/5 ss and increased shedding!  almost 1 full tsp measured just on the sheets! dry, flaky, multiple drying cuts all over, wsp elbows, ears, knees. Good spirits, good energy. Able to sit still in church 1-2/5ss. Good attitude toward all he’s going thru. doesn’t complain. told me tonight: “I know the Lord will get me through this.” Thank you, Jesus for taking care of my son!

Day  461 Friday  1/9/15
Out of bed at 2:31 am, asking for an ice pack, 3+/5 itchfest with anxiety (arms and back), sheets wet with sweat.  Make appt w/TCM practitioner.

Day 460  Thursday 1/8/15

Looking at TCM for eczema, as Brian is displaying TCM symptoms. Starting with foods to cool the blood heat and dispel external wind: eat pears, apples, pomegranates.

Skin same as before; energy and attitude good. Basketball practice tonight, Microsilk tub routine, moisturize. asleep by 1036pm. 1+/5 ss this evening. better than previous evening

DAY 459 Wednesday 1/7/15
Up at 7:25am. 2/5-3/5 today. Happy and energetic still PTL!

Symptoms: very dry skin, flaking; increased thirst esp at night; itchy, dry eyes, constipation (every other day instead of daily like a few weeks ago); c/0 being cold (despite 16 degree weather) even before temps dropped; increased itching esp at night; occasional night sweats.

Resemble TCM “dry heat” –? giving TCM remedies a try. Gonna do TCM food rx for dry heat first and think more about it….

shower routine; lights out 9:45, asleep by 1036, light intermittant sleep scratching

Day 458  Tuesday  1/6/14
Little snowstorm in my bed. Cranky but up at 7:28am. 1/5 ss. YAY!

Day 457 Monday January 5, 2015       1st day back to school after Christmas Break
Up at 12:15am and 1:56am with 3+/5ss. Worked on deep breathing with mantra on exhalation:  “Calm, comfortable, healthy, smooth, strong skin”. Able to stop scratching, calm down. Stayed in own bed until 6:10am. Up for school by 7:10am. Had a nice unhurried morning with mom, dropped off at school on time (left house by 8am.)  Good start to the day!

SKIN: slightly more patchy pink than usual on face with 1 or 2 tiny nicks/cuts on cheek. Upper lip slightly red, but not as chafed as last week. Light moisturizer (coconut oil or lemongrass balm) to dry areas and thin coating of petroleum jelly on upper lip. Still very dry and flaky. 2/5 ss during bkfst.

Thank you, Jesus, for helping Brian a fantastic day today! Great morning; Good day at school; energetic, organized, and efficient after school; ss 2/5 to 2-/5 for most of the evening. Much better than past few days.

Still dry and flaky and shedding. ACV bath tonight to ward off skin infection. Lights out 9:45pm; still awake at 10:45 pm. Tried deep breathing and calming mantra/visualization: inhale; exhale, thinking: calm, comfortable, healthy, smooth strong, skin–while keeping hands calm.

Day 456 Sunday January 4, 2015

Asleep by 10pm last night but up at 11:30pm 3+/5 ss.

SKIN: flaky, dry; scalp dry and flaky; light scratch marks on neck and chin as well as elbows and knees. Eyes very dry/ itchy–> prolonged rubbing of eyes and needing to wet them

ITCHING: better during the day 2/5 with x-box; 1/5 to 2-/5 in church (1.5 hrs at least); 2-/5 during movie. Much better this evening than last yesterday! PTL!

Shower routine with lemongrass balm moisturizer. Lights out 9:30pm but still awake at 11pm. Finally asleep by 11:45pm

DAY 455 Saturday  January 3, 2015
WORSE ITCHING/SCRATCHING IN A LONG TIME. 4-/5 during practice (able to function but hands scratching.) itchfest 4-/5 all evening. can’t stop hands from scratching. BMs clogging toilet again. ? undermethylating? Emailed ND to see if we need to add molybdenum back, maybe zinc, too? These were stopped 10/25/14 and 11/14 when NAC was added.

ACV bath 1.5 c ACV to tub h20 100 degrees; lemongrass balm; 2tsp benadryl (haven’t used this in a while.)

Day  453  Thursday January 1, 2015  HAPPY NEW YEAR!!!
Camped out til after 12, watching Sound of Music. 0/5 ss PTL! Woke up around 10:30am. played inside and out most of day. Dry skin, some cuts behind ears and multiple small scrapes on elbows and knees; back smooth; 1/5 to 2/5 ss most of day (better than usual). lights out around 10pm. Better day today itch wise.

Day 452  Wednesday  12/31/14 New Year’s Eve
Up at 9am with help; lots of junk food and sugar and active play. Skin a little flared around 11pm party, 2/5 ss fatigued, emotional/tearful but calm. Celebrated New Year’s camped out on couch watching Sound of Music, as is our tradition.

Day 451 and 452- ate eggs for breakfast with no significant increase in itching.

Day 450 Monday 12/29/14
3:45am hard, loud sleep scratching 3/5, tossing; sweaty; back very smooth and soft

Asleep around 11:30pm despite lights out  at 9:30pm; 3/5ss

Day 449 Sunday 12/28/14   Nighttimes are nightmares lately
Yesterday evening around 7pm to 12:32 this morning  3+/5 to 4-/5 scratching and sleep scratching. Fewer flakes on bedding today.

Great active day; 2/5 ss. french toast for dinner; tub routine at night 3/5 ss. lights out 10pm but still scratching and awake at 11:30pm. 3/5 hard ss at 3:30 am; sweating. Back is very smooth and soft.

Day 448 Saturday 12/27/14 Stop B6 today because night scratching no better
Itching 3/5 at bed time last night; 3/5 at 4:30 am this morning. Itching seems to have increased or at least not gotten better since addition of B6 on 12/09/14. Will stop the B6 and see if itching decreases. eggs for brkfst

Boys forgot to take vitamins/supplements today. Outdoor time and xbox, too. 60 degrees today Shower routine and lemongrass balm. 3+/5 to 4-/5 ss. Lights out around 10pm.

Day 446 MERRY CHRISTMAS! Thursday 12/25/14
Finished lycopodium 12/23–I don’t think it helped stop the itching. Today was good 1/5 during the day while he was on x-box, but after 3pm he was 3-/5 to 4-/5 up through bedtime. 56+ degrees today. got to go outside to play

SKIN: very dry, flaky, shedding at least 1/3-1/2 tsp dead skin today–yes, I measured. red patches on bil wrists and outer edges of dorsum of hands as well as erythematous, swollen knuckles (looks like bad mosquito bites). hands and knees very itchy as well as his back, especially mid-spine between shoulder blades where he can’t reach.

CUTS: open cuts/abrasions behind ears and where earlobe attaches to the head

ENERGY/FUNCTION: still very good. Had a great few hours playing x-box Tuesday and Wednesday with Oliver, who is coming out of his 8th month without TS. Both got some extended itch relief.

Microsilk tub routine; lemongrass balm over neck, shoulders, elbows, forearms/hands, thighs, knees, and skin over talocrural joints. Lights out at 10 but asleep after 10:45pm. 2/5 to 3-/5 ss while trying to fall asleep. help with scratching, deep breathing, relaxation.

Wonder if this sudden burst of redness and itching may be due to exposure to cat dander on Christmas eve. He tested + for allergy to cat dander originally, but last may’s test by a different allergist said he had no allergies. The cat dander skin prick on this test still was still slightly red and raised, in my opinion. Hmmm.

DAY 442/443  Sunday 12/21/14 and  Monday 12/22/14
Rainy, 34 degrees. Played with good friend Brett. 0/5 ss to 2/5 ss. Movies, milk, popcorn, xbox. On these dates last year, Brian was playing with Brett, it was in the 70’s, rainy, and Brian was 4/4 ss, constant scratching throughout the day, and took atarax at night–which didn’t work for him. What a difference a year makes. Praise the LORD!

Day 440  Friday 12/19/14 

Brian was soaked in sweat last night. No fever, just sweat and some itching 3/5.  He took 2 tsp benadryl one night this week.  It was the first time in a while. Very itchy at night and flaky, but the skin on his back is getting smoother, and his elbows and knees are looking better. We’ve been applying lemongrass balm made by thehomeapothecary on these areas, especially when he has open cuts. Still awaking 2-4 x/night due to scratching, but function during the day seems to be ok. Generally asleep by 10:30 (lights out at 9:30pm) nor 11:00pm and sleeps–w/2-4 scratch wakings–until 7:20am. This time last year, we had him home due to fatigue, lack of sleep, open cuts all over, and constant scratching 5/5.  We’re in a much better place now, thank you, Jesus!

Day 435 Sunday  12/14/14
I told Brian that I thought the lycopodium was doing nothing for the itch because he still scratches a lot at night, and the cuts on his body reflect this. However, Brian stated that he felt better rested lately, despite the increased scratching. He said he didn’t think he was scratching more at night. The B6  must be working? As long as he’s feeling good and functioning well, I can’t complain.

Day 430 Tuesday 12/09/14 Naturopath Follow up
Went to naturopath for a follow up: Now on: 1/2 tab B complex; magnesium, NAC ( N-Acetyl cysteine); glutathione; D3 4000iu. Lycopodium 2 pellets every other day x 2 weeks. Added: 1/2 capsule B6 at night to help calm anxiety and hopefully facilitate more restful sleep. Brian has been functioning well. However, he’s still in a flare and has had increased flaking and dryness; more scratching at night which results in increased # of open cuts/scratches on skin, esp elbows, knees, shoulders; return of open scratch under chin and cuts on bil ears where they attach to the head; a bit more emotionally labile, esp in the evenings. Overall doing much better than this time last year. this cold fall weather seems to wreak havoc on many people. Last visit to ND was in August 2014. no news is good news

Day 423 Tuesday 12/2/14
Up at 7:30am today. Sleepy but pleasant

SKIN: very dry and flaky–he was anxious to get coconut oil on back and lemongrass to legs. the dryness bothers him, the oils make him feel better, and he asked for the humidifier for tonight. 2+/5ss

Scratched up knees and elbows; ears developing small cut again behind the lobe where the ear attaches to the head; flaky scalp.  Skin above upper lip looks better–not red, raw and flaky

FOOD: chobani yogurt, applesauce, milk, oatmeal with maple syrup, almonds, vitamins (D3, B complex, glutathione–taken in yogurt;  NAC–taken in applesauce

Day 422 Monday  12/1/14
After ACV bath and moisturizing with coconut oil to trunk/neck and lemongrass balm to knees/elbows, he was sleep by 10:30pm last night. Miraculously, I was able to get him up by 7:15am,  got ready, went to school. With how bad his skin was this weekend and the lack of sleep, I felt he needed to  just do homework then bed after school, but he was able to play with a friend, do homework, and even eager to attend basketball practice. 2+/5 to 3/5 ss after school. better than this weekend.

Shower routine, lights out 10pm; 2+/5 ss; asleep by 10:30pm. Woke up once for ice  pack around 12am. able to sleep in his bed all night yay!

Day 421  Sunday 11/30/14  NIGHT SWEATING
For the past 2 nights, Brian has awoken scratching furiously (4/5) and drenched in sweat. Felt like sweat but smelled a little like the ooze of old. His back was red and mottled like a heat rash. 

SLEEP: not sleeping through the night anymore, sleep scratching 3+/ to 4/5 several times between 1:00am and 5:00am; sound asleep by 6am

SKIN: scratches on shoulders/blades, back, lateral glutes; badly scratched up elbows and knees; doing ACV baths nightly past 2 nights to prevent infection. lemongrass balm to knees/elbows

Dry and flaky; increased shedding

OTHER: appears to be some increased emotional lability this past week, some increased trouble staying focused, trouble thinking.

I’m feeling sad, frustrated, disappointed at the return of all this. He’s 14 months out and his skin looks like it never healed.  Be patient. Breathe deeply. I thank the good LORD that he continues to heal Brian, even though our eyes beg to differ.

Day 415 Monday 11/24/14
Still in a flare, but not as bad as a few weeks ago.

SKIN: dry and flaky, but Brian feels face looks better today (he has been having dry, red area above the lip; dry, flaky patches on both sides of mouth; flaky dryness under chin that looks like white whiskers)

ITCH and SLEEP: 2/5 to 3/5 during the day when hands/mind not occupied (able to sit in church without scratching for about 35 minutes, then scratching/picking 5 minutes, then able to go about and hour without scratching.) During day 1/5 to 2/5 ss, which he can’t or chooses not to use breathing/distraction techniques to calm his hands.

Falling asleep around 10-10:30 (lights out at 9:30pm) but has been getting up 2-3 x with 3+/ss. Parent helps him scratch his back or applies lemongrassbalm/coconut oil to elbows/knees, the main areas which he scratches vigorously.

Due to broken sleep, I let him sleep in until 7:30am and drive him to school by 8:12am.

ENERGY/FUNCTION: Continues to do well: participating in basketball, going to the Y, taking batting lessons. He has a heavy caseload at school that, intellectually, he is fully capable of doing, but the quantity is teaching him how to prioritize, organize, and be efficient. Though the lessons learned are not without howls, bumps, and frustration.

We are thankful for his energy, perseverance, smile, laughter, and the healing that is taking place in his body. Praise the LORD Jesus Christ who will heal us of all our diseases!

Day 406  Saturday, 11/15/14
11/13/14 night was the first night in a long time that Brian did not get up and out of his bed due to scratching. I was hoping that it meant his 3-month long flare is calming down, but I think it was just that he was really tired from his first basketball practice, from which he and my assistant coach hubby got home after 9pm. He was back to up and out of his bed last night.

Overall, the scratching is still present, but his nighttime skin has calmed down significantly. His back is no longer raised, red, welty-looking around 9:30pm but rather more normal color with a few cuts around his shoulders and regularly present elbow scratches.

Skin continues to be flaky and dry especially around his chin and upper lip. SS is 3-/5 when not occupied. Otherwise, energy and function continue to be good. Recreational basketball season has started, and Brian hasn’t played in 3 years, so it should be interesting.  I still drive him to school in the morning so he can sleep until 7:20am, after sleep-scratching thru the night. Usually able to get to school by 8:10am. I’ve enjoyed our “pre-school” conversations in the car.

Day 400   Sunday  11/9/14
Woke up around 10 am. Said he was tired (lights out 9:30; asleep by 10:30? last night)

Able to sit in church at least 1.5 hours with 0/5 to 1/5 scratching. Skin this morning was super dry and powdery, but, with the exception of a few open cuts, looked better compared to past several ++ days. Neck and back are smoother, and there was no night redness, welts, or raised, inflamed-looking skin for the past 2 nights.

Temps have been 40’s and 50’s at night– wearing jacket due to being cold– doesn’t seem like the temperature dysregulation coming back, but we’ll keep an eye on it.

Day 397 Thursday 11/6/14
SLEEP/SCRATCHING: Brian continues to wake up around 2am or 4am, getting out of his bed and into ours with 4/5 sleep-scratching and a lot of tossing, turning, kicking. He and I may need to move back down to the family room floor so that my dear hubby can get some sound sleep without risk of getting kicked in the groin. Plus, moving from one bed to another brings with it a trail of shedding and twice the amount of sheets to shake and wash. Need to Simplify!

During the day at home, scratching is 2/5 to 3+/5 with reminders to use the relaxation, distraction techniques that his Dr. W taught him as well as deep breathing.

Using coconut oil on ears, neck face where there is dryness and lemongrass balm from Stephanie’s home apothecary on the shoulders, elbows, knees, and lower thighs to prevent infection and to moisturize the area, Brian says it feels good, and I think it does help calm the scratching somewhat.

SKIN: speckled with small cuts from scratching. worse at night, calms down in morning but cuts from scratching remain. worst on elbows–need to watch carefully for infection. very dry, fine flakes, shedding (but not as bad as the beginning of TSW) just enough to look like a bad case of dandruff.

NOTE: Skin Texture: I’ve been noticing lately that the skin on the lateral and distal aspects of Brian’s thighs feels hard, tough, tight–like my skin felt at the height of my scleroderma/systemic sclerosis. He said it doesn’t hurt. Will try some soft tissue mobilization on it to see if it will facilitate increased mobility and suppleness of skin in these areas.

ENERGY/FUNCTION: On a good note, Brian continues with good energy and active participation in baseball, cross country, and school. He was placed in CBG this year with an all honors curriculum and double accelerated math, and he made all A’s! We are so proud of the effort he put into school and his extracurricular activities. Parent-teacher conference went well. We discussed his skin/scratching issues and interventions. They said he is doing great, fitting right in, and seems to be managing his in-class scratching appropriately. One teacher said she would never have known he had a problem had we not mentioned it.) At the beginning of school, I had written them an email with FYI about Brian and TSW.)  GOD IS GREAT! in the midst of TSW hell, he has blessed Brian with kind, caring, capable teachers and good friends. This parent couldn’t ask for more. PTL!!!

Also, he has been working on learning to swallow his vitamins with yogurt  instead of me having to crush them. Yeah!

Night time: ACV bath.  9:30 pm skin better looking than last night; elbow cuts closing, skin not welty red. 2/5 SS this afternoon. Ran 2 miles with a friend.

Face very dry and flaky. Eyes look like allergy eyes ( mild) and looks like he needs to go to sleep (since 3pm), but he’s forcing self to stay awake.

Day 391 Friday 10/31/14     HAPPY HALLOWEEN!  Last day of 1st grading period

Up at 4:00am with 2+/5 SS and he was cold. Fell back to sleep quickly. Humidity in house: 45%

Awoken at 7:20 am, coconut oil, vitamins in a yogurt parfait, devotions, brush teeth, and able to catch the bus today! PRAISE the LORD! Despite the flaking, 2+/5 scratching, and some open cuts (fewer that yesterday morning,) Brian said he felt better today and felt like he slept better. Yay!

Day 390  Thursday 10/30/14  MINI-ITCHFEST RETURNS! AAAARRRGGGG!

Up at 12 am  4+/5 SS and anxious, consumed by the itch. Applied coconut oil. Scratching hard  😦  My poor boy.

Woke up at 7:30am with worst-looking skin since the Spring itchfests: multiple open cuts on back, shoulders, raw elbows, scratched up forearms, cuts on back of knees, and scratched up front of knees, very dry flaky skin on forehead, upper lip, and neck; backs of ears with open cuts and dry again.

Had a mini itchfest–1st one since early Summer– scratching his legs furiously and having an emotional meltdown due to the severity of the unrelenting itch. I hugged him tightly and we worked on deep breathing, calming the hands. Took 3 pellets of nervinum and moisturized with coconut oil.

Came home on bus at 3:15pm. 1/5 ss. He said itch was fine at school PTL!

Today after school was so much better than the morning. Brian said he was fine with itching and that the long sleeved shirt helped. Seemed happier. He was ahead in his homework, so I let him play minecraft—and I even watched with minimal dizziness. He also got to play outside with friends and completed his portion of a project. 2/5 SS. I am so proud of the effort he has put in on and off the ball field, despite the frustrating skin and itch issues.

ACV bath, coconut oil, deep breathing in yogi seated posture, and massage. Lights out 10pm; 2+/5 SS. finally asleep by 10:45pm.

Day 389  Wednesday  10/29/14
1:00am–up with 3+++/5 intensity scratching for about 5 minutes, requested coconut oil. Slept soundly until 2:20am, when he started scratching again. Brian described it as uncontrollable. Tried icepacks, tried to assist with rubbing/scratching, but Brian kept digging harder into his skin and sleep-scratching furiously. I tried to calm his hands, but it just made him thrash around more. Coconut oil to very dry and cracked ears.

Despite getting up scratching at 1 am, Brian was able to get up relatively easily at 7:22am and got to school by 8:10am.

SKIN: dry and flaky, but not as powdery as yesterday. Raised welt-like areas gone, just multiple small open areas where he drew blood from sleep-scratching so hard. Drying cuts along left ear lobe and back of both ears where they attach to his head.

Afternoon: Some emotional lability or just fatigue and 6th grader attitude? 2/5ss; scratching seems decreased compared to past few days.

PM: shower, coconut oil, movie, books, lights out 9:30 pm; asleep around 10:30pm.

Day  388  Tuesday  10/28/14 

Woke up with powdery dryness of face and neck. Increased shedding noted on body and sheets. Blood stains from where he scratched open areas. Night skin was red, raised, but in morning, skin calm again.

Dry face/ neck look like Juliana’s recent photos of her flare. Weather is getting in the 70’s except for today, lots of tests at school, humidity inside house 55-60%.

Oddly enough, he is scratching LESS today than yesterday, despite the fact that his knees, thighs, UEs, and other skin areas are the worst they’ve been since the springtime.

Dry, flaky. Dry and cuts  behind and around ears again. ???skin infection increasing itching?  I want to avoid antibiotics (hasn’t had them in about 11 months) but may have to use oral antibiotics again.

Microsilk tub, coconut oil; lights out 10pm. 1/5 ss. Up at 1:00 am with 4+/5 scratching. 

**After school, he was wearing his jacket despite 80 degree weather. Is temperature dysregulation returning or did someone say something to him about the scratches on his arms? He also seemed a little down though denied anything was wrong when asked.  Said he was TIRED today, moreso than yesterday.  Will keep eye on this–may be an effect of addition of NAC? Will check with doc.

****Day 386 Sunday 10/26/14***TREATMENT UPDATE

Stopped Molybdenum; started NAC (N-Acetyl-L-Cysteine) in applesauce to be taken with glutathione. NAC is for allergies, eczema, liver support, and used with glutathione for recycling glutathione.

NATUROPATHIC/genetic/methylation treatment to date: 1/2 tablet B complex, glutathione, NAC, zinc, magnesium, 4,000 iu D3

SKIN: prn moisturizing various dry areas (primarily neck, shoulders, elbows, knees, some trunk) with coconut oil; also using prn lemongrass balm on BIL knees; microsilk tub 15-20 min/ACV bath x 10m/ or shower.  usually one of these daily unless too tired and skin is feeling comfortable.

Right now, skin continues to be very dry, flaky, 3/5 ss when not occupied with reading, playing baseball, running, etc. Once stopped, 2/5 to 3/5 ss or picking. He continues despite our reminders to use other methods of management.

Skin appears worse at night with red, raised areas like hives covering posterior neck and back and patches here and there on upper extremities and lower extremities. He has various scratched open/healing areas where he has been digging or picking. Need to keep areas clean and watch them carefully for infection. We want to avoid antibiotics if possible.

Skin looks better, calmer in the morning compared to the night before. However, increased dryness and flakiness lately.

ENERGY/FUNCTION: still very good. Played well in 3-day baseball tournament this weekend. However, decreased sleep, lots of activity, and long days may have contributed to fatigue and meltdown on the evening ride home tonight.

SLEEP: Trying lights out by 9:30pm but unable to fall asleep until around 10:30 or 11pm. I have to wake him up in morning. I’ve been letting him sleep until 7:20am and try to get to school by 8:05.  Needless to say, he has not been catching the 7:45 am bus since the 3rd week of school.  Still having 1/5 to 2/5 sleep scratching and gets up to switch beds around 5am. Still getting more sleep than this time last year.

Day 384 Friday 10/24/14
Awoken at 2:57AM  with vigorous 3+/5 sleep scratching. scratching hard enough to abrade lower left back. I tried to scratch for him or hold his hands, but he would just jerk hands away and scratch harder. I applied ice pack, but scratching continued. I finally had to come down here to surf the web just so I couldn’t see and hear him scratching and gouging his skin. His back was hot, probably due to the flannel sheet, so I put a cool flat sheet under him. 4:15 now. I wonder if he’s soundly sleeping now? I really don’t want to find out….

Day 383  Thursday 10/23/14
Last time trial today :  17:09 for 2.2 miles, improved from 18:28 from 9/10/14. Cross country season over for Brian and he had a good experience.

Day 382  Wednesday  10/22/14
I spoke too soon. The itching is waking him up again such that he wakes up and gets help with scratching so he can sleep. Skin is pretty scratched up here and there. He’s still able to focus on schoolwork. 3/5 scratching after school; 2/5 to 3/5 at lights out. using coconut oil and lemongrass balm. slight increase in shedding compared to last week but no where near shedding from several months ago.  We are not eating a very clean diet, either. Maybe if it were a life and death situation we could do it…

Day  379  Sunday 10/19/14
Busy weekend with homework, b-day party, practice, and lots of outdoor play with neighborhood kids. Finally able to play x-box with Oliver who lives in the UK. Tried but couldn’t get in touch with Faiz to have him join playing mine craft.

Temperature’s been in the 60’s past few days. increased dryness noted around mouth and forehead. 1/5 ss with homework; 2-/5 to 3-/5 with no activity. ACV bath tonight. still doing coconut oil prn on particularly dry or itchy spots. energy and function still great, able to sleep at night, lately no hollering in middle of the night for itch relief, so flare seems to be calming a bit. very tired mentally and physically though due to everything going on. this is not necessarily a bad thing. more “eustress” rather than distress.

Happy to have Faiz and Oliver as long distance friends. Lights out 8:30pm; asleep by 9; awake around 1045p scratching and asking for h20.

Day 375  Wednesday 10/15/14
Rainy day. Smoothie with spinach. got up easier today. Still driving to school due to need to sleep until 7:20am. appears to be less scratching 2/5 and some decrease in redness, especially around neck this evening. Busy week with lots of tests. Not in elementary school any more….no crosscountry due to rain

Shower routine; light coconut oil and lemongrass on knees. Lights out 9:52pm

Day 374 Tuesday 10/14/14
25th Anniversary for my husband and me! Love celebrating it with a healing, happy Brian! His flare seems to be calming down a bit. He slept in his bed the entire night the past 2 nights, not arising do to itching. Skin not as red in the evenings, but he is picking at his skin so much that he is creating punctate openings. Still flaking a bit. SS 1/5 to 3/5 after school, but able to sit and do home work as well as watch tv or read for long periods of time with 0/5 to 1/5 ss.

Has developed left heel pain–possible beginnings of plantar fasciitis–and we are stretching, icing, and doing toe curls to try to treat it, as well as using arch supports.  Nutribullet smoothie in morning with strawberries, blueberries, spinach, banana, and OJ. Mixed vitamins in it, and he was able to swallow the D3 pellets without biting them or gagging on them PTL!

Day  372  Sunday 10/12/14
Damp day after the rain. Slept in yesterday and today until 9am or so. Energy good. Doing well in school so far despite increased workload and participation in cross country and baseball. activity is good for him, and it’s his choice to participate-Yay! X-box with Faiz  was fun. Oliver’s in the hospital in the UK, with his mom defending no steroids while the docs and consultants are still not getting it. hold your ground, Rita!

Skin: some flaking, dryness, some open areas where he picked and scratched hard. PRN and light use of coconut oil on neck/trunk then lemongrass balm on front and backs of knees and thighs. alternate btwn coconut oil and balm for elbows. 2 ACV baths this week and used microsilk 2 or 3 times.  We’re falling out of any routine for bathing, oiling, etc. Maybe because I am just too tired to be as tyrannical and anal about it? The skin will heal when it heals? We’ve been pretty lax about diet, too. C’est la vie…

Itch: 2+/5 to 3/5, primarily early in morning, right before falling asleep, and when not engaged in activity.

Day 367  Tuesday  10/7/14   1 year of topical steroid withdrawal as of yesterday!

Asleep by 9:45pm last night. Up at 12:30am; slept til 7:30am. 2+/5ss last night, 1/5 getting ready for school. Has a cold, congested. Working on time management and organization skills.  Got to talk and skype with Faiz 10/4/14. Continue with vitamins/supplements minus zinc and mg, cuz we’re out. Using yogurt. Veggie intake has been sparse lately, my bad.

Day 363  Friday 10/3/14
Despite decreased sleep, able to wake up by 7:30 with no fussing. Able to stay in own bed last night.

Day 362 Thursday 10/2/14–Discouraging itch!
For past week and a half or so, Brian started waking up again in the wee morning hours 4 or 5 am due to scratching. Last night was particularly bad with him hollering for me around 2am. From 2-3am, he had 4 episodes of hard sleep scratching, then some periodic 1+/5 scratching until 7am.

He has been having trouble getting up in time to catch the bus in the mornings.  I usually have to drop him off at 8am.

Function and energy for sports and other non-school activities are excellent. Running cross country after school 2-4 days/week. baseball Friday-Sunday. Staying active is good mentally and physically.

School: adjusting nicely to middle school. Has to get used to the increased work load. Making friends, learning to learn. CBG/honors curriculum, 8 classes. So far all A’s and a B

Skin and itch are another story. Still in a flare. Lately he has been picking skin a lot and has multiple small  open areas on trunk, arms, and knees/thighs due to scratching. Skin is mottled, periodically pink raised areas, some flaking.

Itch: 3/5 scratching at home when hands and mind are not occupied.  He said the itching is fine in class. Declines benadryl and zyrtec. been Taking ACV bath every few days to try to stave off infection. coconut oil to neck, and I alternate between coconut oil and lemongrass balm for elbows and thighs/knees. Went to DBH and he told doc he was doing well. They reviewed visualization and relaxation/distraction techniques to minimize itch and picking. Using ice packs again at night for itch. Physical, mental, and emotional stress seem to result in increased itching and light “welting” of his skin.

Trying to get in bed by 9:30pm and lights out, but Brian has been having trouble going to sleep until after 10. Home he comes out of this flare, manage this itch, and keep healing and get healthy so he can continue to attend school.

Sleep has started to get disrupted again. I think it’s because of the increased itching. Lights out by 9:30. lavendar balm to feet (3/4 days), lemongrass to knees. still awake at 11:15pm…2+/5 ss  GOAL: decrease stress through CB techniques, deep breathing and relaxation techniques and physical activity–>decreased itch—>increased sleep. A good diet and plenty of water should be part of this, too, but it is such a challenge to balance the wants of the child and yourself with what “may” be more beneficial to his skin and itch.

Day 347 Wednesday  9/17/14
Neck and trunk red, raised, pebblegrain/hive appearance after running cross country, dripping sweat but ok–knocked off 1 minute from his 2.2 mile run since last week. Increased scratching, open scratches, and dryness since school started. stress + flare+ fatigue from all the increased mental and physical activity over the past 2 weeks are probably contributing to skin issues.

ACV bath tonight; shea and coconut oil; lights out 9:15; asleep by 10:15.

Day 345  Monday  9/15/14

2 weeks into 6th grade. The honeymoon is over. Increased work load and responsibilities compared to elementary school. I think this uptick in itch and flare is stress-related…

Day 344  Sunday  9/14/14

Up at 7:50am. At ball field 9am-6:30pm. Beautiful, cool sunny day. They WON the 11u Division 1 Back 2 School Bash! Dinner, shower routine, coconut oil, lights out 8:15am, asleep by 8:30. One tired, happy puppy.

Energy and function: excellent

Skin: flaky neck; mottled, patches of slightly red, raised areas on neck and trunk; itch 3/5 off the ball field 1/5-2-/5 on ball field.

Day  343  Saturday 9/13/14 baseball tournament Sat/sun
End of second week of school. enjoying teachers, classes, selling magazines, running cross country, chrome book, and baseball.

Up at 6:35am this morning without me having to repeatedly tell him to get up. on the baseball field 3pm-9:15pm. lights out 10:45pm. Despite cool, rainy conditions, great day of playing today–hitting, defense. 1+/5 ss while on the field; 3/5 after 9:15pm. Shower routine and applied lemongrass balm to body from neck down. coconut oil on dry, red upper lip and forehead.

Function: excellent
Skin: dry, flaky redness on upper lip indentation; very dry and flaky neck and some increased redness. arms and elbows dry; trunk: slightly raised erythematous patches all over–like a rash. bil popliteal fossae dry, flaky; legs red, raised bumps here and there.

Bil feet and ankle skin: soft, smooth, beautiful and itch-free
Itch: 1/5 to 3/5

Taking vitamins with yogurt. ice pack for itchy back. Lights out 10:45 pm.

Day 340  Wednesday 9/10/14
Up on own at 7am! PTL. fussy about taking vitamins and supplements–middle schooler mood n tude–coconut oil to neck, arms, and knees. skin dry, some flaking. scratching 1/5 to <2/5  with baseball, running, activity but increases to 3/5 when in car, at home, restaurant and needs reminders to “calm hands” and breathe deeply.

Enjoying classes, teachers, and cross country. 1st time trial ever:   18:28.1 for 2.2 miles.  pretty good for never having run or trained for a race before. pretty pumped about it and the chrome books they got today.

tub routine, lemongrass balm on neck, trunk, legs–really scratched them up this evening fretting about how he will manage chrome book and class changes. ice pack. lights out at 10pm. Thank you LORD for your healing touch and getting my son functioning well and enjoying life again!

Day 339 Tuesday 9/9/14

Up at 7:12am. coconut oil on neck and shoulders; lemongrass balm below that. legs look much better. breakfast as before.

Day  338  Monday  9/8/14
Up by 7am; breakfast same as yesterday except sausage. lemongrass balm to neck, arms, legs, trunk. slight increase in shedding compared to last week, but not as bad as beginning of TSW . <2/5 ss. itching much less than last week. Crappy diet but less itching–go figure…

Tub routine, lemongrass. Lights out 9:30pm; asleep by 10:15pm

Day 337  Sunday  9/7/14
Baseball from 11am-5pm today. zinc balm applied to neck, arms; stick sun screen to face. 70’s weather, breezy. 1/5 to 2/5 or less while on the ball field. 2+/5 when in car or in restaurant. Overall, itching was relatively minimal compared to last week, despite eating all the foods we were supposed to be avoiding: eggs, gluten, dairy, fruit-sugar combos

FOOD: Breakfast: activa yogurt with vitamins, oatmeal w/milk, maple syrup, 6 almonds some turkey sausage; banana, peanut butter, french fries, h20, gatorades; italian sub, cookies, boberry biscuit.

Shower routine with lemongrass balm applied neck to ankles.

Skin: feet and ankles look good; neck/arms/body mottled lighter new skin and tan, less-sensitive skin; texture dry, and pebble grain-ish. Seems to be doing better with itch and skin appearance since starting lemongrass balm 4-5 days ago.

Lights out 9:30pm; asleep by 10:15pm.

Day  336 Saturday 9/6/14
FOOD: breakfast: activa yogurt with vitamins, french toast with milk, turkey bacon, and maple syrup. Lunch: mcdonald’s chicken nuggets with soda and fries Dinner: bojangles chicken breast, mashed potatoes, biscuit, sweet tea. Bad, I know…

Baseball tournament today and tomorrow. Games at 12 and 4; need to leave at 10 to get to fields by 11. Applied a zinc balm from Stephanie’s Home Apothecary to Brian’s neck and elbows/forearms then kid’s stick sunscreen to his face and ears. He was <1/5 ss while playing, and he said the zinc balm seemed to do well–he didn’t flake during the game! It looks funny because it’s white and he looks like he has white paint on him, but it doesn’t sting and it protects the delicate new skin from the sun. Applied lemongrass balm to his legs. Played well.

Shower routine, lemongrass balm to neck, trunk, legs, arms–no coconut oil this time. Asleep by 10:30pm.

Day 335 Friday 9/5/14
Both of us woke up at 7:23am! bus comes at 7:50am! We scrambled and he made it. What happened? Well:
3:00am 3/5 ss which got him out of bed. sleep scratching hard–shoulders, arms, back. I helped scratch and applied generic aveeno w/oatmeal, which stopped the scratching. May be just the 11-month flare, but he has had a lot of gluten, milk, and fruit-sugar combos lately, especially last night: several bowls of red berries cereal with whole milk around 6pm, chocolate milk after cross country, yogurt with his vitamins breakfast, cheese stick and pbj with strawberry jam at lunch….scratching legs and shoulder blades during cross country. Shower routine last night, lemongrass balm to lower back and legs…

**The longer days, school, cross country, and baseball have been a lot. His body needs to get used to all the activity. We’re trying to adjust bedtime accordingly, but even though he may get in bed by 9, he hasn’t been able to fall asleep until after 10. yet.**

On a positive note, the past few days of 6th grade have gone well. Able to read in bed at night with <1/5 ss. Lights out 9:30pm last night and fell asleep around 10pm. Able to sit in church with <1/5 ss for at least 1.5 hours PTL. Just have to get the scratching under control again so it won’t disrupt his sleep and mess up his system again.

Microsilk tub routine. coconut oil on face and neck and upper trunk; lemongrass balm on lower half of body/legs. Asleep by 10:15pm.

Day 332  Tuesday 9/2/14–Start Lemongrass balm
First day of 6th grade! Energy, sleep, and function are great. Able to get up at 6:45am, catch the bus to/from school, play with friends, go to a pitching lesson–all it 90+ degree weather. Taking Vitamins and supplements.

Skin: still in a little flare that started at the end of July/1st week in august. mostly just increased itching 3-/5 to 3/5, increased dryness on neck and elbows, powdery shedding, splotchy skin neck to ankles. Able to sit still in church or read quietly with <1/5 scratching. However, eczema patch on right forearm has smoothed out and looks better, and both ankles (that used to be wickedly itchy) are soft and smooth.

Microsilk tub routine. coconut oil to top half of body, lemongrass balm from Stephanie’s Home Apothecary on lower half of body. Lights out 10pm.

Day 325 Wednesday  8/27/14
Fees Day at the Middle School. Brian’s feet/ankles look/feel normal. Still in an little flare with itching 3-/5 and more powdery dryness, increased fine flakes in the morning. No oozing, stinging, etc., though. Function and energy are above average; he wants to run cross country in addition to doing travel ball this fall. So, despite the skin doing it’s healing thing, Brian’s doing well.

Day 321  Friday  8/22/14
Skin of  feet and ankles looks great–smooth, soft. Still with 2/5 ss to 3-/5 ss mini flare consisting mostly of increased itch and obviously dry, flaking skin. After almost 2 months of little to no moisturizers, we started to use coconut oil again on persistent, very dry, itchy, and flaky patches on neck, chin, and upper lip. Brian was pleased with the results, so we’ll continue. Also resume regular microsilk tub baths. Need to do an ACV bath, but I’m getting a little lax on his routines, as he is doing so much better. I know I should be more diligent, but, truth is, I am weary. Praise God for continued strength and healing.

Yearly physical with pediatrician went well, but doc attributed all the improvements to  the cognitive behavioral therapy (

Day 311  Tuesday  8/12/14
Slept in top bunk last night and did not fall asleep until after 11 because he was rearranging his room.  Woke up at 10:42am this morning. 2+/5 during day; increased to 3+/5 during a sweaty, humid pitching lesson which calmed down to 2/5. Seems to still be in a mini itch flare. Still able to do activities but skin not behaving.

Day 308 and 309  8/9 and 8/10/14 Saturday/Sunday
No significant changes to speak of. Brian still with 2+/5 scratching but function, sleep, energy, heat/sweat tolerance are going well. Working on trying to get him on a sleep schedule in preparation for school, but we can’t stop watching long movies. Goal is in bed by 9pm and lights out by 10pm, since he will need to get up no later than 6:45am or 7am during school time to catch the 7:45am bus.  Lately, he’s been falling asleep by 11:45pm and getting up around 8:30 or 9am, when not awakened for an early morning commitment. eating eggs in french toast, cheese, bread, milk but in moderation. with TSW, if you are flaring, everything seems to increase flares. If you’re not flaring, then nothing will make you flare. Last day of daily documentation. I shall update this log as new and interesting information or changes arise. Thank you for reading this Blog.  Best of luck in your recovery! Rosemarie

Day  307  Friday 8/8/14

Last day as co-crew leader for VBS. awakened at 8am. 1/5 ss. applesauce w/ vit/sup, special k w/red berries. 2% milk; 1.5 grilled chz sandwiches, oj-strawberry-banana smoothie

Day 306  Thursday  August 7, 2014
Awakened at 8am. VBS til 2:30.  3 pieces pizza; butter, sugar, and cinnamon on bread for snack. 2+/5 ss in afternoon. conditioning camp 6-7:30–> hot, sweaty ss 3/5 but still able to participate. Sore legs from camp. percussion and massage of major muscle groups, deep breathing, gentle stretching.  plain greek yogurt w/bananas and strawberries. lights out at 10:45pm

Day 305  Wednesday  August 6, 2014 Third time’s a charm!
Asleep by self at 11:15 pm last night and awakened at 8am this morning to go to dental procedure. Oral sedation and dental procedure successful, smooth, and itch/scratch-free! Bad baby molar removed and small cavity on other tooth filled. NPO since 12am last night. decreased gluten, sugars, and milk today after dental procedure. 1/5 to 2/5 ss today.  Lights out 10:45pm

Day 304  Tuesday  August 5, 2014
Co-leader for vacation bible school this week. 5 pieces of pizza. Ate lots of sugar, milk, junk Monday, and he scratched from 1:30am to 6 am this morning 3/5. Hard to wake up for VBS. Need to get rid of junk food esp sugar, milk, gluten–seems to increase scratching? Asleep by 11:15pm.

Day 294-303   Friday, July 25-Monday  August 4, 2014
Drove to Kissimmee, Florida on 7/25 and got back home Sunday 8/3. Hot, humid, baseball, sunshine, lots of pool time, park rides, late nights, early morning wake ups, and fun with teammates. Brian did great the entire week. A bit increase in scratching: ss 2+/5 to 3-/5, probably because of the increased amount of sugar, milk, donuts, and other junk food and hardly any green nutrition. Skin is mottled due to the tan he got, and the scratching produced the lighter patches on skin. Eczematous patches improving: smoother, less red and raised.

Day 293  Thursday  July 24, 2014 Last day of middle school orientation
Drove to Charleston, SC to visit family on our way to Florida.

Day 292  Wednesday   July 23, 2014
AM: Awoken at 8:15am for orientation. same breakfast. 9-12:30 orientation. Lunch McD’s chick nuggets, fries, gogurt, milk. bowling, tv, pitching, dinner-boneless wings, teriaki dip, root beer. <2/5 during day; 2/5 to 2+/5 evening/during dinner.

PM: shower routine, lights out 9:45pm

Day  291  Tuesday  July 22, 2014
AM: Awoken at 8:15am to go to 1st day of Middle School Orientation. oatmeal w/agave, milk, vitamins and supplements in applesauce. 9-12:30 orientation. lunch. play at friend’s house. baseball practice. doctor’s appt. Went to Coldstone to celebrate Brian’s successful management of symptoms and his getting better! F/u with doctor in October if needed.

PM: shower routine; lights out 9:30pm.

Day  290  Monday  July 21, 2014 
Woke up at 10am. oatmeal, milk ;3 Rs; pizza, sundae; Lolo; tv; wholewheat pasta w/butter s/p, parmesan, few leaves spinach w/ ranch; practice baseball; fishing. 1/5 to <2/5 scratching today. Good morning and afternoon.

PM: microsilk tub routine; applied leftover fukaya liquid to some healing scratches on ankles and eczematous patches on arms. Asleep by 11:30pm.

Day  289  Sunday  July 20, 2014
Still asleep when I went to work at 8:30am. Baseball practice 12:00pm in Colonial Heights; pool with dad and friend around 3pm. played, x box, movie.

Overall 0/5 to 2/5 scratching today, which is pretty good considering he’s been in the sun a lot. He’s getting tan, but the areas where he has scratched the most are paler, giving him a mottled appearance. That’s a good tradeoff for incapacitating itchfests.

PM: Shower routine. Lights out 11:20pm. Had to cut his nails–they were getting long. However, just a few open cuts from overzealous scratching.

Day 288  Saturday  July 19, 2014

Awoken at 7:15am to make it to 9am practice in Colonial Heights. minimal if any scratching. Went fishing (caught one) then batting practice. Pool. shower routine. Asleep by 9:30pm. a miracle!

Day 287  Friday July 18, 2014
Doing well. Plans to stay there all day. Good for him! woke up at 7:30am, ate breakfast, played, went to pool no sunscreen, played more.

Picked him up in afternoon. Obviously dry and a bit flaky and picky. 2+/5 ss while driving home. TV, played outside a little, but tired. Lights out 10:15pm.

Great day and sleep over! Another milestone!

Day 286  Thursday  July 17, 2014
Woke up on own at 8:45am. bagel with cream cheese, OJ for breakfast. minimal flaking and evident dryness on skin. batting/pitching 2:30-3:30pm, 1/5 ss during day. out with dad in pm ball, fishing, etc.

PM: Sleep over at fishing friend’s house.

Day 285 Wednesday July 16, 2014
Awoken at 815am to get to practice by 9am. Groggy but made it. 1/5 ss at practice, hot and sweaty but fine. Helped decorate for VBS at church. PM played with friends outside; ball w/ dad. lights out by 10:45pm per dad (I went to bed at 7pm).

Day  284  Tuesday  July 15, 2014
Slept in until 10:30am. Fewer flakes on the bed sheets. Had pancakes and milk for breakfast went to dentist; helped decorate for vacation bible school at church; busy work at home; batting/pitching at TSI with dad. <2/5 ss up until leaving the house for TSI at 7:30pm.

Bat and pitched well. regaining strength and pitching speed: 51-54mph. Shower routine, a little coconut oil. Had trouble falling asleep. Lights out 10:30pm but still awake at 11:45pm.

Day  283  Monday  July 14, 2014
Woke up around 10am. blueberry pancakes, milk, vitamins in applesauce. paperwork. played with friend for several hours. milk, graham crackers w/ PB, PB crackers. batting practice, fishing with dad and friends, watch HR derby. lights out 12:10am. Scratching today was minimal, 1/5 to 2/5 at most.

Day  281  Sunday  7/13/14
Awoke at 9am. Church, baseball practice, 1/5 ss during church and practice. 4-8pm pool party with rec baseball team, 0/5 to 1/5! Shower routine, coconut oil, tv, read. light out 10:15pm, asleep by 11pm. Fantastic day in terms of itching, energy, heat tolerance–no ice needed!

Fell out of bed around 11:45pm. found him asleep on floor. able to get back in bed.

Day  280  Saturday  7/12/14    Good to be home!
Awoken at 9:16am for 10 am-12pm baseball practice (fell asleep around 2am early this morning). Did great in the heat and humidity with 1/5 to 2/5 SS during active practice. He brought a water bottle, and I brought NOTHING! WOW! No ice for itch today!

Played at friend’s after lunch. Home by 4:30pm. TV. Had a little fatigue mini melt down around 6pm, yawning, emotional, but no itchfest or scratching >2/5. Was gonna go to bed but whining it was too light outside. Played outside in heat and humidity almost 2 hrs with friends.2+/5in evening

Microsilk tub routine followed by coconut oil. Dorsum of feet beautiful, ankles much better. Eczematous patches still present on bil arms/ forearms. Ice pack tonight for knees and back itch. Warm and humid in his room. Asleep by 11pm. 2/5 ss around 11:45pm.

Day 279 Friday 7/11/14     Last day in Denver and Vacation
Awoken at 8:30am mountain time. Flew to Chicago on 4:50pm flight, then 9:05pm to RIC.
Landed at RIC 11:58pm. Home by 1:30am. 2+/5 to 3/5 toward end of night. Tired. Late nite snack. Asleep by 2am.

Day 278 Thursday 7/10/14
Awoken at 9am. Could have slept longer. French toast, yogurt with vitamins, bacon, syrup; lunch same as 7/9, cookie; dinner: steak, mushrooms, mashed potatoes, bread w/ butter, h2o, root beer. Practiced baseball, walked around Breckinridge resort, cards. Shower routine.

Day 277 Wednesday 7/9/14
Awoken at 8:30 am. Waffles, whipped cream, milk, applesauce with vitamins, bacon. Same lunch as 7/8. 2/5 SS. Tiny flaking noticeable on shirt and more shed skin on bed sheet. Practice baseball. Movie, dinner, cards, lights out 10pm, still lightly awake at 11pm.

Day 276 Tuesday 7/8/14
Awoken at 8:30 am. Bkfst waffles with whipped cream and blueberries, bacon, yogurt with vitamins. Shower, lightly moisturized with coconut oil. Practiced baseball, Italian sub/ chips for lunch, movie w/ mozzarella sticks, popcorn, water. Dinner chicken nuggets, milk, fruit. Cookies and frozen yogurt for dessert. Practiced ball. Played cards. Lights out 10pm, but still groggy awake at 11 pm. 2/5 to 2+/5ss during day. Skin less visibly dry all day and evening. Is this due to the shower or the coconut oil?

Day 275 Monday 7/7/14
Drive from Hot Springs to Denver. Awakened at 8:40am. Bit of egg, applesauce, one pancake w/ syrup, 2% milk; Chips, beef jerky, water, root beer. At Rockies game: foot long skinny brat, h2o, frozen cheesecake on a stick. Asleep by 11pm. Visibly dry skin. Declined moisturizer. 2/5 SS at game; several instances of 3/5 intensity but not duration during night.

Day 274 Sunday 7/6/14
AM: up at 8:30 or 9 am

Family cookout. Hot outside stayed in. Drank a lot of crystal light lemonade and chips, pie, ice cream. Dry skin, eczematous hard, dry, but not as red. Declined coconut oil. 2/5 SS to 3-/5 SS during day. Itchy feet, scratching at night 3/5 intensity but did not fully awaken him.

Day 273 Saturday 7/5/14
AM: still asleep at 9am

Day with grandparents, aunt, and cousin while hubby and I played golf. He had a ball bowling, church, going to magic show, eating a lot of junk food. Wired at night due to drinking a large coke. Happy, energetic, talkative. 3-/5 to 3/5 SS which he managed well. Declined coconut oil. Skin very dry.

PM: in bed by 12:30am

Day 272 Friday 7/4/14 Happy 4th of July!!!  9 months steroid-free! Happy independence from topical steroids Day!
AM: awoken at 8:15am; out of house with grandpa by 8:55am

Activity: threw candy from the truck in parade; 11:30am-4:30pm Mt. Rushmore and Mammoth site. Dinner. practice baseball with dad. Watched 5 different fireworks displays while sitting on the hill outside grandma’s house. Pretty neat

Diet: honey bun, applesauce, milk, pot roast, milk, ice cream, pork chops, broccoli, potatoes, blueberry pie with ice cream.

PM: in bed by 11:30pm

Day 271 Thursday 7/3/14
AM: tired. Awoken at 8:30, could have slept a few more hours.

Skin: very dry, declined coconut oil

3/5 to 3-/5 SS ; low key day; drive back to Hot Springs.lots of sugar and gluten

PM: shower routine with coconut oil to back, neck, UEs and LEs due to itchy, flaky dryness. in bed by 10pm; 2+/5 SS

Day 270  Wednesday 7/2/14   Family Reunion at Moreau Ranch Sanctuary in Isabel, South Dakota
AM: awoken at 8:30, but could have slept longer. Very dry skin, 2+/5ss

Activity: out to play inside and outside with cousins from 9am to 8:30pm, stopping only for lunch and dinner. 3-/5 SS most of day–constant scratching but not furious or bad enough to stop activity. Movie til late. Fun day

Diet: meat, potatoes, sweets, water, soda

PM: asleep by 12:30am (2:30am in Richmond)

Day 269 Tuesday 7/1/14 Driving to family reunion from Hot Springs, SD to Isabel SD
Awoken at 8am; drive to Rapid City by 9:10; 2/5ss; dry skin; arrive at reunion 3pm.

Played, ran, kites, w/ cousins until 10pm; cards till 11pm. Shower coconut oil. Asleep by 11:30pm mountain time, so 1:30am in Richmond. 2/5-3/5 ss very dry skin

Day 268 Monday 6/30/14
AM: woke up at 8:30 am; pancakes, milk, and bacon for breakfast. No moisturizer.

activity: played with dog, 10am-12:30pm played at the Plunge with cousin, fly kites, 2/5-3/5 ss. Did great at Plunge, lots of swimming, swinging on rope. Requesting coconut oil due to dry skin.

diet: popcorn shrimp, blizzard for lunch. Baked potato with butter, ribs, cheesecake dinner

PM:vplay, movies, bed by 11:30pm. 2/5 SS. Skin dry, some flakiness. Big scabbing on lateral malleolous and  between  digits 1&2. Put aveeno on right elbow and forearm in afternoon and on bil knees/ feet/ankles in pm. Said knees stung a little

Day  267  Sunday  6/29/14  Drive from Denver, CO to Hot Springs, SD
AM: woke up at 7:30am; shower, no moisturizer.

Skin: dry overall; round patches of flaky eczema

activity: 5.5 hour-long car ride. played with dog@ grandma’s house

diet: junk food during day; pot roast, ice cream dinner

PM: shower; water pik for hole in molar. 2/5-3/5 SS

Day 266 Saturday 6/28/14  Afternoon flight to Denver, CO
AM:woke up at 9:45am. Excited about going to family reunion in SD.

skin on hands feels smooth; patches of raised  eczema on bil arms and forearms; energy excellent! Itching 3/5, no ice needed; lot of junk food today. Great flight. 2 hour time difference in Denver. Will drive to SD in morning. In bed by 12am Denver time, 2am Richmond time.

Day  265  Friday   6/27/14  Tried Oil Pulling
AM: slept in until 9:35 am; 10:20 dentist to check on painful tooth–>no abcess yet, brush, floss, and rinse with smartrinse by listerine more often each day. need to schedule cap

Activity: played with Brett 11:30-4:30pm; made birthday card; 6-8pm baseball game-played wiffle ball with friends; hot/sweaty 2/5 to 3/5 ss. late dinner. home by 10:45pm

PM: haircut while watching tv, shower routine. Oil pulling x 15-20 minutes 1 stp coconut oil; brush, floss with assistance. ice pack for between knees; lights out, 2/5 ss,  asleep by 12:15am.

Day   264    Thursday    6/26/14
AM: “slept in” awoken at 8:15am; got to ball field by 9:00am 2/5 ss

Activity: 9:00am-12:20pm-baseball camp last day 2/5 ss; 12:40pm-4:05pm shower, tv, 3 Rs;slept from 4:30 to 7pm! went to ballgame, late dinner 3/5 ss

PM: microsilk tub routine, books, bed asleep by 12:00am. 3/5 ss today possibly due to a lot of gluten and dairy foods yesterday  (more than past week, anyway)

Food: applesauce with vitamins, 1 cheese stick, 1 slim jim, gatorade, h20. chicken sausage, banana. coconut milk ice cream

Day 263 Wednesday 6/25/14
AM:”slept in” until 8am, got to baseball camp at 8:50am; overcast. so sunscreen except lip balm

Activity: 8:50am-12:30pm-baseball camp. 12:30-5:05pm play with friend mostly indoors. 5:30pm-9pm watch outdoor baseball game and played with friends at the fields. Late dinner.

Food: bad food day: applesauce with vitamins, whole milk, apples. chips, gatorade, h2o. pepperoni pizza, large sprite. gatorade, corn chips, almonds. corn dog, french fries, pizza, garlic bread. Lots of gluten today.

PM:microsilk tub, coconut oil; lights out 11:30pm 3/5 scratching; fell asleep by 12am.

Day   262   Tuesday   6/24/14   
AM:I woke Brian up at 7:30am to get ready for baseball camp. Got up and dressed without a fuss. Got to the fields by 8:30 am. 

Activity: 8:30 am-12:30 am camp, 2/5 when standing still waiting for his turn; lunch @ panda express. not gluten-free at all, so we’ll see if his itching increases in the next 48 hours. He’s been pretty much gluten free for about 7 days now, and itching has been 1/5 to 2/5, with “flareup” being 3+/5–not bad at all! 2-3:15 tv and chilling out. 3:15:went to friend’s house to play. 6-10pm: watched double header at the field and mostly ran around and played with friends. 2/5ss.

Food: applesauce w/vitamins, apples, pb, 2 pieces string cheese, gatorade, China Panda’s orange chicken, 24 oz root beer, choc chip cookie, broccoli, h2o. field: corndog, fries, h2o, chips, candy bar, ice pop, slim jim. Home: almond milk.

PM:shower 10:40pm; lights out by 11pm. legs/abs sore from 30 minute conditioning section of camp past 2 days. Asleep by 11:30pm. A bit more scratching this evening than usual about 3/5

Day    261    Monday   6/23/14 First day of baseball camp 9-12 M-Thu
AM: up at 7:40am; got to ballfields/camp at 8:40am 2/5 ss

Activity: 8:40am-12:20pm camp–outside, 81 degrees, no sunscreen. 2/5 to 2+/5 scratching, no ice needed, able to participate fully and was not distracted by itching or sweating. 2pm to 4pm: played indoors and out with friend at home.2/5 to 3-/5 ss. 5:45 went to watch ball games with dad.

PM: Home by 9:15pm; shower routine, brush, books, bed. tired due to an early wake up and a busy, activity-filled day. asleep by 10:30pm.

Day  260   Sunday   June 22, 2014
AM: I worked, went to church; Brian up around 9:30am; steak/potato bkfst

Activity: baseball warmups and game: 12-2:45pm; 1/5 or less scratching, no ice needed! running around at ball field with friends 2:45pm until 7:30pm (sat and watched a game for about an hour); coldstone  and brownie. only 2nd wheat/gluten item eaten in the week. pretty good. 2/5 ss

PM: microsilk bath, light coconut oil, tv; books; lights out by 10:30pm;2/5-3/5ss not able to sleep until maybe 12am. ice pack.

Day 259 Saturday June 21, 2014  1st day of summer!
AM: I worked; Brian-daddy day. watched baseball games, played baseball  2/5 to 3/5 ss when not on field. Needed ice for some itching during hot and humid game (outside 2pm-5:00pm) still with a cough/congestion

PM:steak, potatoes, root beer x 3; microsilk tub; movie; lights out by 11:30pm

Day  258  Friday  June 20, 2014
AM:got up to got to bathroom around 5am; master bed and 3/5 ss. Eliminate dairy today to see if scratching decreases again. Up and dressed by 9:30am. Dry Cough during night and some during day and evening

Activity: played with friends inside and outside; tv/xbox; warmups and baseball game 5-7:30pm; played well 2/3 hits and 1 walk. watched game until 8:30; late dinner at Q barbeque

Skin/itch: 3/5 during day and 3-/5 to 3/5 during game and used ice pack to neck. Haven’t had to do this in 2 weeks. His skin is dry, flaky, minimal moisturizing now, multiple scabbed spots and several thickened, raised eczema patches noted on upper and lower extremities. Still picking at them.

PM: microsilk tub, light moisturizing with coconut oil; lights out 11:30pm, books.

Day 257   Thursday   June 19, 2014
AM:ice pack about 12:15, still wide awake. Fell asleep sometime before 1 and slept until 10am. dressed, breakfast

Food: Mott’s natural applesauce w/ vit & suppl; fish oil 3gels, chicken sausage, mango. 1/2c whole milk, pb with celery. 3 cheese sticks, tortilla chips, pb, oj-cranberry combo; gatorade; cheese stick, pb

Activity: played outside w/friends than inside for x-box due to high heat and humidity. clean up/declutter, read, write, rithmatic; tv; tsi with dad and friends 5:30-8pm.

PM: increased to 3-/5 to 3/5 scratching today–>? due to dairy that he had today?movie, books, bed; ice pack 2+/5ss. asleep by 11:30pm. cough–>?cold; gave warm h20 with honey/lemon

Day   256   Wednesday   June 18, 2014

AM: woke up around 10am, dressed self, came downstairs–all without prodding by mom!
1 to 2/5 ss in morning

FOOD: gluten free waffles, maple syrup, almond milk; apple with peanut butter; french fries, ketchup; 2 cups nesquik chocolate milk. restarted elderberry syrup and immunogen due to cough and congestion again. coconut milk ice cream; spoonful of PB; 2 mozzarella cheese sticks, gluten-free waffles with maple syrup, almond milk.

Activity: read; bike w/mom for 42 minutes in the heat; bowling with friends; picking in car;  batting and pitching lesson 7-8pm in heat and humidity–did great itch-wise, no problem with the sweating! <2/5

PM: microsilk tub routine; movie, 3-/5  light ss after tub ? due to dairy?movie, read book until 12 am. trouble falling asleep. Good day

Day   255   Tuesday   June 17, 2014
AM: 2:00am asking for help with itchy feet 3+/5 ss, ice/assist w/ scratching. Slept until 10:15am. dressed, read book; skin dry, multiple scabs and flaky areas, 2/5 to 1/5 ss

Activity: 12-3:30 pool and play with friend. great time; did fine in sun; rinsed off after pool. skin dry, picking, but <2/5 ss. tv, math, practice pitching, dr. appt 7:45-9pm, no hypno, talked about strategies to manage the picking/scratching; ghengis grill dinner; college world series. Mostly gluten-free, dairy-reduced today

PM: Great day today. watched college world series. lights out 12:10; ice packs for  itch; 2/5 or less; asleep by 1am

Day 254   Monday   June 16, 2014  Trial gluten-free/reduced and dairy-reduced diet
AM: 1:50am-2:30am 3+/5 scratching, requiring sitting up, ice, assist w/ scratching. SKIN: fresh open areas noted on left shoulder blade and various raised patches on arms and legs; red mottled rashy-looking area over left scapula and posterior thorax ? triggered by ice cream? or the sugary drinks? (less than Saturday’s consumption.)

Just more itching tonight than past 13 days and actually woke me up again. 😦 back to the drawing board. focus on diet. try paleo autoimmune one or at least eliminate dairy, wheat/gluten and eggs, fruit-sugar combo, but concerned about how to get calcium if we go dairy-free.

Woke up at 10:15am. Got dressed, 1/5-2/5 ss. Settled on trying gluten-free, dairy free/reduced, cut down on refined sugars and his no eggs, no fruit-sugar combo. Then progress to paleo, AIP from there if needed/able.

Activity: 90+ temps did indoor stuff; 2+/5 to 3/5 ss. Skin dry, flaky, multiple areas of patchy thick eczema spots and some broken skin spots from scratching

PM: Able to do mostly gluten-free today yay! made coconut milk ice cream with maple syrup sweetener, aidell’s chicken sausage with veggies. skip shower. 2/5 ss. lights out 10:15pm, books, ice, asleep by 12am.

Day 253   Sunday   June 15, 2014
AM: Hubby says Brian was a little itchier than past few nights but did not need ice. 2/5 much better than 5/5! Slept until 8am. got ready for baseball tournament and out the door by 9am.

Activity: 9:30am-7pm baseball warm-ups, 3 games, lunch. 2/5  to 3-/5 scratching. no ice needed. no problem with heat and sweat. h2o, soda, gatorade during day. ice cream at 9:30pm. Skin:increased scratched, red areas possibly due to not filing nails daily?

PM: shower, moisturize with light coconut oil, tv, lights out 10:15pm, asleep by maybe 11:45pm.

Day   252   Saturday   June 14, 2014  1st day of summer vacation!
AM: awakened 1:30 am for ice pack for itchy feet. slept soundly until 8am. got ready for baseball game by 9am.

Activity:   warmups and game until 1pm; lunch; pool party unti 4:30pm. played in pool from 2:30-4:30 and did great! 2/5 ss during warm ups and ball game playing 2nd baseman but did not need ice for itch. dry and flaky after pool, but back skin was smooth. shower; wiffle ball with friends in front yard, in house, in their yard 6pm-9:15pm.

PM: another shower, light coconut oil, tv, books, bed. ice pack, 3/5 ss Lights out 10:15pm. Finally fell asleep 12:00am.

Day   251   Friday   June 13, 2014 HAPPY 5TH GRADE GRADUATION, BRIAN!
AM: slept from 11:10pm to 8:20 am! coconut oil moisturizer. Got to school by 9:05am bell. Met our goal.

Activity: school graduation 9:05am-11:55am o/5 to 1/5 ss on stage; candela’s lunch party (2/5ss) until 1:15pm. movie 1:45-4pm (2/5ss) 5pm-7:45pm baseball game 2+/5 ss during the game; late dinner with friends 2+/5 ss

Diet/itch connection? more itchy during game today despite cooler weather this evening. It may be because of all the sugary stuff he had today: soda for lunch, soda with popcorn at the movies, candy bar, gum, along with some regular food. Definitely more concentrated refined sugar than usual–>soda. Will cut back tomorrow and the following days

PM: microsilk tub routine; asleep by 11:15pm. Great day!

Day   250  Thursday   June 12, 2014

AM: Finally asleep by 2am. 1/5-<2/5 ss; sleeping soundly. Woke up at 8:40am. 2/5 ss to 3/5 ss. skin dry and flaky, some blood spots on sheets from scratching self. school by 9:18am.

Activity: school 9:18am -1:10pm off bus. tv, snack, read. went across street to see if friend could play; friend gone but while talking to friend’s mom, scratching all over the entire 5 minutes or so he was talking to her–anxiety itching? ping pong, TSI with dad and friend from 6pm-8pm.

PM: Microsilk tub routine; books, asleep by 11:10pm

Day   249   Wednesday   June   11, 2014  Bowling day for 5th Graders

AM: 3+/5 scratching 2am-2:30–>ice packs, assist w/ scratching; hollered for ice one or 2 more times during night, but no full-blown-stay awake for hours- itchfest. Slept until 9am. light moisturize with coconul oil. got to school by 9:20am.

Activity: school 9:20am-4:10 off the bus. Bowling party and lunch until 1pm. < 2/5 ss. tv. batting and pitching at TSI with friend. Picking continues…

PM: GREAT DAY! microsilk tub routine, light coconut oil. Skin looks pretty rough tonight: more raised red, pimple-like areas, a few eczematous patches, but no increased out of control itching. Lights out around 10pm BUT could not sleep despite trying different things.  He read books from 12:30-1:38am and finally fell asleep by 2am. 1/5 ss. For once, itching was not preventing him from sleeping!

Day   248   Tuesday  June 10, 2014

AM: fell asleep fussing. slept until 9am without waking up parents. Still in his own bed! Woohoo! Skipped shower and moisturizer routine. Just dance 4 to wake up. Got to school by 10:15am

Skin: this morning, flaky dry but not more than usual; eczematous patches on arms, legs– hard to stop picking at them. Skin seems not as flared as previously, red scratched areas scabbing over. 1/5-2/5 ss; seems to be more habit scratching than a “need to scratch” itch.

Activity: 10:15am-4:10pm off bus school. 6pm: 30 minute batting lesson in hot, humid enclosure, forgot water, yet DID not get itchy, have a meltdown or need a break! He was hot and sweaty after the lesson, but his skin felt fine and he felt good! PTL!!! Previous to last week, he would need a few breaks because of fatigue and the sweating and heat caused him to itch ferociously and sting. Better tolerance to heat and sweat!!!  7pm doctor’s appt went well. no hypno. talked about looping. Late dinner.

PM: ACV bath, light coconut oil, got self into bed by 10pm; asleep by 10:45pm.

Day   247   Monday   June 9, 2014
AM: Slept 12:30am-9 am with 0/5 to 2/5 ss. needed ice on feet for itch and head for headache. gave Brian scalp and neck massage to get rid of head ache. light coconut oil moisturizer. At school by 10:10am

activity: school 10:10am-4:10pm off bus. snack-banana bread and 2 cups 1% milk. 5-7pm warmups and baseball game. pitched well; Despite upper 70’s weather, 0/5 to 1/5 ss when pitching or playing defense. ice x1 for 3/5 ss when sitting. dinner–burger, fries, onion rings, sm milkshake.

PM: skip tub tonight. lights out 10:00pm; upset over iPhone issue, little meltdown; unable to fall asleep until after 12:15am.

Day    246   Sunday   June 8, 2014  BACK TO CHURCH! PTL!
AM:Still up at 12:15 am; had trouble falling asleep; 2/5 ss. fairly uneventful night yay! awake at 9am; light moisturize with coconut oil. Sill has congestion/runny nose.

Activity: 10:45am-1:25pm church, lunch. Able to stay in the sanctuary with 1/5 scratching for 1st time in months! Has not been able to attend church since before Easter due to frantic, disruptive scratching and incredible shedding. Did great the entire mass! practice pitching outside 2:00pm. worked on batting–did great-coldstone. made new friends across st. played outside and inside til 8pm. Dinner. ice cream. GREAT DAY!

PM: microsilk bath, coconut oil moisturize; tv, books, lights out 10pm. Unable to fall asleep. Still awake at 11:55pm. 2/5 to 3-/5 ss.  Asleep around 12:30am.

Day    245   Saturday   June 7, 2014
AM: Did not sleep as well tonight as past several nights. Was up from 1:30-3am with 4+/5 ss on feet and ankles. used ice packs, ice massage, coconut oil. woke up at 10:45am. Out of the house by 12pm. mom working brian-daddy day.

Activity: batting and fielding at TSI with dad. got hot and sweaty, but did fine–>no ice needed! outdoor party 4-8pm–>played wiffle ball and ran around in sun with friends. 2/5 ss most of time except 1 instance of 3/5 ss for

PM: microsilk tub routine; coconut oil;tv; lights out 11pm.

Day   244   Friday   June 6, 2014
AM: hollering for an ice pack at 4am and again at 6:30am. still, he slept in his own bed and got some sound sleep. Awoke at 10am. able to get to school by 11:20am. 2/5 ss, coconut oil

Activity: school 11:20am-4:10pm on bus. Had pizza party and yearbook signing with 1/5 ss. Had a lot of fun with friends. tv. 2/5-3/5 at home. 6:51-10pm baseball warmups and game; dinner.

PM: took 3 pellets of nervinum for itching;  lights out 11:45pm; 2/5 ss; ice pack; sleeping in his bed.

Day   243   Thursday   6/5/14
AM: slept 12 am until about 3am–> itchy feet. slept until awoken at 5:09am itchy feet–>ice. Woke up 9:15am; 2/5 to 3-/5 ss; got to school by 10:10am

Activity: school 10:10am-3:45pm, appt with naturopath, practiced pitching, tv, read. Naturopath checked out his ears and throat–has some virus or bacterial infection going on. nose and ears congested. right inner ear a little red w/ a little fluid. started elderberry syrup (1/4 tsp 2-3x/day) and immugen (10 drops 3x/day) for this cold/virus and nervinum pellets (3 pellets prn) for anxiety itching. naturopath taught Brian how to clear his eustation tubes. did biomat and craniosacral but didn’t fall asleep like previous biomat and CS sessions probably because he has been getting more uninterrupted sleep.

**EGGS for Dinner

PM: ACV bath, light moisturize w/ coconut oil, book read. lights out 10:45pm. Asleep by 12am.

Day   242   Wednesday   6/4/14
AM: Slept from about 12-2:20am until he awoke, needing ice and coconut oil to itchy feet. Then slept soundly through the night! Awoke on own at 8:12 am but needed encouragement and cheering on to get ready. 2/5 ss, picking; needed just tincture, no shower needed. “Tired” but able to get to school by 9:15am! YAY!! Last SOL today

Activity: school 9:15am-4:10pm off the bus. tv. 7-10pm warmups and game 2/5 ss during game, no ice needed!

PM:books, bed, lights out 10:45pm, asleep by 12am.

Day  241  Tuesday  6/3/14
AM: slept all night in his own bed (with 1/5-2/5 ss that did not require ice) 11pm to 10 am! I slept all night beside the bed and didn’t have to get up during the night. PTL! Got to school by 11am.

Activity: school 11am-3:45pm. 6:30pm-8:15 batting lesson, played wiffle ball with friends, dinner, practice pitching. Hot and sweaty but no excessive itchiness! PTL!

Skin: feet look a little better this evening, hair growing back on head, upper back, legs, eyebrows

PM: ACV bath, rinse, light moisturizing with coconut oil. Lights out 10:30pm. Still awake at 11:30pm. 2/5-3/5 ss. Sleeping in own bed/room for 3rd day in a row. yay!

Day 240 Monday 6/2/14
AM: Briefly awakened at 3am and 6:50am asking help with scratching his back 3-/5 ss. Slept in his own bed in his room all night for the 1st time since November 2013!  Sound asleep until I awakened him at 10am. 3/5 ss. shower routine, coconut oil, tincture. getting anxious while dressing. 4-/5 itchfest prior to leaving house. got to school around 11:11am when he had a major itchfest meltdown, not feeling good, tired, so we returned home. tried to calm itchy feet down with ice cube massage, and he was yawning badly. he slept soundly for an hour and 15 minutes. ate, 2/5 ss tried to get dressed and another itchfest on his feet started 4+/5, crying, hyperventilating. we iced feet/ankles, deep breathing, dressed, and got to school calmer at 2:20pm.  Over tired and needed more sleep, obviously.

Activity: school 2:20pm-4:10 off bus. 3/5 ss. warmups/baseball game 5-9pm. 2/5 ss during game, played well, lots of energy, managed itch on own without needing ice pack. YAY!

PM: microsilk tub routine, light moisturizing with coconut oil and  1 tsp pj. 2+/5 ss. Lights out 10pm; asleep by 11 in his own bed!!! day 2!

Day   239   Sunday   6/1/14   BRIAN’S 11th BIRTHDAY!
AM: 2/5 ss around 2:20am; no ice or oil applied. Slept until awoken at 8:30am. Skipped shower. coconut oil to dry parts,breakfast: 1/4 c milk.
GREAT night’s sleep “Best I have ever slept!” left for ballfields at 10:30am

Activity: warm ups/Baseball game 11-2pm, 2/5 ss. Birthday celebration, play with teammates 2-3:50. Game 3:50-5:15. Rested/played w/ teammates. game 7:15-9:15. Won the Virginia State Championships! 4-/5 driving home. home by 11pm.3+/5 ss stopped at sonic to eat–>vanilla shake ?increase itch? TERRIFIC BIRTHDAY FOR BRIAN! Great scratch management

PM:skipped shower. 2+/5 lights out 11:30; asleep by 1200am. ***Tried sleeping in his own bed instead of the floor tonight.

Day 238 Saturday 5/31/14
AM: awakened around 2am 2+/5 scratch then slept until we woke him up at 7:00am, skipped shower, light coconut oil on feet/ankles and dry areas. Ready to leave for Williamsburg tournament at 7:35am.

Activity: arrived in Williamsburg at 9am. Warmups and 2 baseball games from 9am-2:30pm.1/5-2/5 ss. Lunch, check into hotel. 3+/5 ss–>ice pack; Busch Gardens and dinner from 4:30pm- 9:30 pm. 2/5-3/5 ss. No milk products today. Itch scratching less today…due to no milk?

PM: Skipped shower, just sloughed and coconut oil on feet/ankles,dry parts. lights out 11pm. Asleep by 11:30pm.

Day  237  Friday  5/30/14
AM: 4-/5 scratching at 2 and 4am; lots of scratching very little sound sleep. I woke him at 8:30am, 3/5 ss, got to school by 9:35am for SOL. wore shorts again today. yay!

Activity: school 9:35am-3:45pm. 3+/5 ss after school–sweaty, hot, itchy. 5:15pm batting practice, game 6-8pm.  cool night 2/5 scratch during game. 8-8:45pm running around/playing  friends–hot, sweaty 4/5 ss and emotional outbursts probably due to being awoken so early this morning, ice to itchy spots

PM: shower routine; books read lights out 11:03; 3/5ss . ice packs

Day   236   Thursday   5/29/14
AM: Lights out 9:45pm last night and fell asleep at 11pm. But woke up at 12am, 1, 2, and 3am with very dry, itchy feet and ankles. needed ice and bag balm to feet/ankles. sound sleep 315am-9am. breakfast, skip shower cuz skin felt ok, coconut oil to back/shoulders elbows/legs and bag balm to feet and ankles, tincture. Got to school by 10:05..and wore shorts! YAY! Pretty Good morning.

Skin: very powdery flaky, dry, but smooth in a way except over tiny bumps that feel like tiny scabs. some red scratched areas on knees, arms, and feet/ankles.

Activity: school 10:05am-4:10pm off the bus; took initiative and started homework. tv. baseball practice.

PM:microsilk tub routine; books read/lights out 10:00pm; fell asleep around 12am.

Day  235  Wednesday  5/28/14
AM: even with lights out at 9:45pm, still awake at 11pm, 12 am, 1am and 2am with 2/5-3/5 ss especially bil feet. applied bag balm to and massaged feet/ankles & held pressure points at 11, 12, and 1am. each time, feet/ankles were dry and flaky again, as if ointment were never applied! Finally asleep by 2:30am. Some whimpering, but no screaming like 2 previous post-hypno sessions. I also kept my comments to myself and did the feet thing, which probably helped avoid verbal conflict. Still asleep, 9:18am. Groggy awake at 9:47am. Breakfast, shower routine (1/2 T pj, bag balm to feet/ankles, coconut oil other parts.) 1:09min to dress. At school by 11:05am. PTL for a calm day and for me being able to keep my mouth shut!

Activity: school 11:05am-4pm; eat, homework, play; batting practice then game got rained out; sweaty 3+/5 ss after school w/ need for ice and toweling down also 3+/5 on the way to the field. 1/5 with sitting on ice pack and doing homework

PM:lying down 9:45pm; books read. Asleep by 11pm; up at 12am.

Day   234   Tuesday   5/27/14
AM: slept 11:30pm-2:00am, when awoken with very itchy feet. needed ice packs and water. slept until 6:30am and awoke w/dry, cracking, itchy heels and feet–>bag balm. Asleep again. Awake at 9:05am, breakfast, skipped shower cuz his skin felt okay–>slough off, moisturize with coconut oil, bag balm to feet and heels. 2/5ss; made it to school by 10:05am. Yay! smoothest morning since September 2013! PTL!

Activity: school 10:05am-5:00pm; batting lesson 6:30pm; at doctor’s appt 7:45pm-9:30pm. hypn. want to focus on “skin is healing” and “scratching mindfully”

PM:Lights out 9:45pm. lying down, 2/5-3/5 ss, and still awake at 12:00am.

Day   233   Monday    5/26/14   Memorial Day
AM: asleep 11:15pm-2:30am when he needed icepacks for feet and knees, help scratch back. slept soundly from 3am-9:00am; woke up 10:30am. shower routine. had a fit because no pj (trying to transition to lighter moisturizers due to the heat.) 2+/5-3/5 scr. Used Fukaya skin repair and the Equate version of aveeno w/ colloidal oatmeal moisturizer.
Skin: dorsum of feet with multiple small open areas from scratching. it looks like skin is thin again. heels dry, cracking. has been wearing dermasilk undersocks on and off. preferable to keep them on for long periods of time to get most benefit, but he kicks them off at night.

Activity: homework until 3pm; bike riding until 3:20pm. 2+/5 scr. tv. outside play.

PM: ACV bath; movie; lights out 10:15pm, asleep around 11:30pm

Day   232  Sunday   5/25/14
AM: fell asleep after 12am; sleep scratching as usual per hubby no better, no worse. Soundly sleeping until 10am. Shower routine. out of house by 11:45am. 2+/5 ss.  Outside in the sun, soda, ice cream, sweat, 3/5 to 3+/5 until 1:30pm. Bike riding.

Activity: watching baseball games, movie, dinner.

PM: lights out 10:30pm; asleep around 11:15pm.

Day   231   Saturday   5/24/14
AM: still awake at 12:45am. I had to work so I went upstairs for an unbroken night’s sleep. Hubby said sleep scratching as usual–no better, no worse.

Activity: play at friend’s house 11:30am-5:30pm. 3/5 to 3+/5 ss, indoors and out, sweating/hot. 5:30-8:30pm some out doors, mostly indoors 3+/5 to 4-/5 ss that required assist with ice packs, drying off sweat, and 2-3 shirt changes. 3+/5 to 4-/5 til 10pm. Other than the constant scratching, Brian had a blast and had a great day.

PM: shower routine; tv; late bed time

Day   230   Friday   5/23/14
AM: awake with  3+/5 11:15pm, 12:30am, 3am. bag balm to feet/ankles, ice to legs, back. soundly sleeping until 9:45am, breakfast, shower routine, tincture/deep breathing, timed readiness race, school by 11:25am.

SKIN: tried dermasilk undersocks. took pictures of his feet and ankles before he put socks on this morning. 0/10 pain and itch. applied socks. will see if they help decrease itch and comfort the skin.

Activity: school 11:25am-3:45pm; 4+/5 ss neck, shoulders, back; needed reminders to use his ice cubes, deep breathing, and to slow down/calm down frenzied scratching. calmer after about 30 minutes + air conditioned car and house. Bike riding. watch friends’ baseball games 6-9pm. ate hot dog, chips, ice cream, soda. 2-3/5 during 6-8 and 3+/5 8-9. had one incident of 4+/5 earlier with need for help icing it down to calm it down.

PM: skip tub; Mg; lights out at 9:50pm 2/5 to 3/5 ss; hard time sleeping–> too wired from all the fun during the day; still awake at 12:45am….

Day   229   Thursday  5/22/14
AM: Asleep by 12:17am. 3/5 ss 3:05am, bag balm to itchy feet/ankles; groggy awake at 9:05am. bkfst, shower routine, 3/5 ss mesereum, tincture, got to school by 10:05am without a hollering match yay! Better night! PTL!

SKIN/ITCH: pebble grain texture, increased itching yesterday and this morning. ? change from whole to 1% milk and increased quantity (2-3 c vs 1-2 c per day) or could be the heat; temps in 70’s and 80’s. rash looks better after ACV bath last night

Activity: school 10:05am-5:10pm. 3+/5 to 4-/5 at school. Painful itching, but he was able to get it under control himself with ice cube and ice pack.itching with schoolwork. Practice 6-7:50pm; major itchfest around 7:25pm:5/5 SS, crying, hurts, itchy, anxiety/frantic, wanting to go home to sleep. Used ice packs on chest, knees, arms, back,  and neck; deep breathing; ice cube massage. Possible causes: Hot, sweaty despite nice breeze; waiting for his turn in the sun; ?anxiety; fatigue from long day? Calmed and better emotionally after cooled down but unable to return to practice for fear of recurrence. Dinner.

PM:skip tub; ice to feet, hands. took initiative: lights out 9:15pm. Asleep by 10:30pm.

Day  228   Wednesday   5/21/14
AM: Asleep after 12:00am. 1:45am & 3:30am up with 3+/5 ss. sleep 4:45am-8:30am. ROUGH night. emotional event similar to PM on 5/6/14. Slept until 9:30am, bkfst, shower routine, 3/5 ss, no tincture or mesereum today. School by 11:05am.

Activity: School 11:05am-5:10pm; baseball field until 9:25pm. 3/5 to 3+/5 ss during entire 2 hr game; needed my help with ice cube massage to neck, back, Bil scapulae, deep breathing reminder. Homework.

PM: ACV bath 101 degree water, 2/3 filled tub, 1 cup Bragg ACV, light pj, balm to bil feet/ankles, ice packs for legs and arms. Lights out 11:35pm; acupressure points at feet/ankles, deep breathing; asleep by 12:17am. PTL!

Day 227  Tuesday  5/20/14
AM: awoke at 1:40am 2+/5 and stirred at 6:00am; awakened at 8:30am by mom despite soundly sleeping. Shower routine-very light pj, bag balm to feet/ankles, breakfast, 3/5 ss; tincture/mesereum; school by 9:15am YAY! (Reading SOL today.)

Skin: fewer flakes, not glaringly red; fading red dots and abrasions/scratches

Activity: 9:15am-3:45pm school. 4/5 ss at 3:45 due to hot sweaty skin from recess. told him to breathe deeply and ice it. still about 3/5 by 6pm, despite ice, mesereum, tincture, and bag balm to feet. he wore cotton shirt instead of the underarmour. homework; changed to another cotton shirt )-:{ batting lesson; doctor’s appt.–hypn–felt good; dinner. 2/5. zinc

PM: Skipped tub; lights out 9:45pm. almost asleep by 10:15pm then woke up. Mg. tincture. 10:30pm-11pm 3+/5ss, ice, bag balm. 11-12:15am 4+/5 to 5/5 scratch, crying, wailing, “I want this to be over! the itch hurts me!” loud, emotional, can’t sleep. 

Day 226  Monday 5/19/14
AM:1/5-3-/5 ss Slept soundly until 9:30am; shower/breakfast/routine 3/5 ss; school by 11:30am

ACTIVITY: 11:30am-2:40pm school; 3-430pm Naturopath: biomat/ craniosacral–>0/5 x 40 minutes asleep. Baseball/dinner 5:15-9pm 2/5ss-3-/5ss.

SKIN: smoother, few flakes and decreased shedding; raised bumps, still edematous at ankles; red dotted areas ? abraded crests of bumps from scratching; various eczematous patches but no >3+/5 ss

PM: skip TUB cuz feeling good like the other night; washed vital parts; SOLs tomorrow wants to be able to get there on time. lights out 9:45pm bag balm, ice; acupressure feet/back; finally asleep by 11pm

Day  225  Sunday  5/18/14
AM: Slept 10:45pm-1215am; 3/5 scratch–bag balm on feet/ice; 2/5 at 5:35; up at 6:30am, shower routine, breakfast, dress, on road by 7:15am. Skin: decreased flaking, soft in some areas, rough in others. Good night, able to get up after no tub last night

Activity: 7:15am-12:45pm; baseball tournament, in partly cloudy, cool weather; no requests for ice for itching; 1/5-2/5 ss during the tournament! 12:45-3:30pm played with friend. More activity outside til 7pm. 3++/5 ss; splotchy skin

PM: homework; TUB routine; lights out by 10 but unable to fall asleep until close to 12:00am.    2-3/5ss.

Day 224 Saturday 5/17/14
AM: good night? per dad; 10:32am–still in bed. Out of the house by 12:45pm

Activity: 12:45pm-8:45pm baseball tournament out of town. 1/5 to 3/5 scratch; only 1 incident of needing to ice down after sweating from running around playing frisbee; able to play several innings with 1/5 ss.

PM lights out 10:15 asleep by 10:45pm. no shower cuz he said his skin felt really good. it looked fine, too. Good day!

Day   223   Friday   5/16/14
AM: Awake at 12:15am asking for help w/ back; red raised bumps diminished and skin a bit smoother than before ACV bath. He said it seemed to help. 2+/5 to 3/5  ss til 3am. Used ice packs to feet, back, hands; massaged bag balm into feet and ankles; acupressure to points on foot, ankle, elbow, neck, and back. Sleeping soundly 3-8am. Awake by 9:30am shower routine; yelling match again. 2=/5 ss school by 11:15am.

ACTIVITY: school 11:15am-4:10pm off bus. says a lot of other kids at school were sick with what he had. played w/ friends, outside, rode bikes, x-box; activity w/ dad. I was in a bad mood, still sick, and went to be around 8pm

PM: shower routine. lights out

Day 222 Thursday 5/15/14
AM: Slept from 11pm to 1:30am before requesting ice and bag balm to feet for itching 3+/5 ss. Awake again around 3:30am for same. slept til 9:21am; 1/5-2/5 ss; eat, shower routine, ready for the day by 1pm. 3/5 scratching, mild cough; no fever

Activity: classwork at home, 3+/5 scratching; ping pong, baseball activity w/ dad, movie

PM: ACV bath  w/ 2/3 tub of 101 degree water, 1 cup Bragg ACV, 10-12 minutes soak; shower rinse. Asleep by 11:15pm per hubby.

Day 221 Wednesday 5/14/14
AM: still awake at 1, 2,3, 4, 5:30. 3/5 scratching; wants to sleep but can’t. finally asleep 7-9am. temp 97.2. Still has some cough and sick person emotional outbursts.

Skin: pictures; dotted red raised bumps on shoulders, back, arms; dry; mild flaking

Activity: light/resting. schoolwork, tv; 2+/5 scratching to 3/5 throughout the day; fever still gone

PM: lights out 10:15pm; asleep by 11pm . Pretty good day. PTL!

Day 220 Tuesday 5/13/14
AM: asleep 11:15pm-1:44am when he awoke c/o headache and sore throat, 2/5 SS. Temp 100.4 got ice pack for head; inspection of throat did not reveal classic strep spots, but will double check when he wakes up in the morning. 5:35am, moaning, headache, fever 104.3. 10:30: 104.6 with moaning, aching, dizziness-flu misery. 11:07am I texted baseball prayer warriors for prayers for Brian’s comfort and complete healing. 11:23am one texted all a prayer for us. by 11:45am or 12pm 100.8 at doctor’s office. 12:46-3pm more bible verses, prayers, and support offered via text. 5pm: 98.9; 11:30pm 97.7! and no dizziness or aching. still with slight sore throat, cough, and headache. Power of prayer. PTL!

ACTIVITY: took him to doctor: type A flu—-> rest! lots of fluids! Tylenol or Motrin for aches and pains if needed. Slept during day.

PM: unable to fall asleep due to all the rest during day. lights out at 11:30pm-12am.

Day 219 Monday 5/12/14
AM: asleep by 12am? calm night: slept 12-almost 7am!? YAY!; 2/5 SS at most–I didn’t wake up, so either his scratching was manageable or I was just dead to the world. 6:58am groggily asked time and date. Fell back to sleep. Breakfast, shower routine, dropped off at school by 9:12am! PTL Miracles do happen! (did have 2/5 scratch, a little itch-anxiety, mini-shouting match pity party–both of us got over it)

ACTIVITY: School 9:12am-4:10pm off bus. Good day at school. Feeling good. Hot on bus so he used the blue cooling towel. Sweaty and 1/5 to 3/5 scratch, but no worse than usual and definitely not stinging, “freaking out from sweat” itchy. Homework, tv, batting practice, game. Pitched great 1st 3 innings then sat out the rest due to being tired. 1/5-2/5 SS during game. Had increased sore throat, more cough when we got home. Tired. 3/5 SS

PM: lights out 10:45pm; asleep by 11:15pm.

Day 218 Sunday 5/11/14
AM: Asleep after 12am. scratchy sleep per hubby but not significant enough to stay awake for long periods. Up around 10:30am–regressing to former time table again? Fever gone

SKIN: very dry, flaky, light red rashy areas, scratches on shoulder blades, legs, knees, feet, ankles. really disappointed. thought the vitamin supplements would help this….

ACTIVITY: Now I am sick w/ congestion, cough, sore throat, malaise, but no fever like Brian. Boys able to get out and enjoy the sunshine while I try to recoop for the night shift. Double dose of batting then sky zone for 30 minutes. Lot of moving and sweating but no complaints of stinging or excessive itching! Still wore pants but tolerated sweaty skin very well– Happy Mother’s Day ….

PM: tub routine, no excessive stinging or itch anxiety; movies, lights out 10:30pm. Applied/ massaged in bag balm to feet/ankles, did accupressure to awake at 11:30pm; asleep by 12am? 1/5 to 2/5 SS PTL!

Day 217 Saturday 5/10/14
AM: Bad night! no sleep, lots of sting and itch!!! 4/5 to 5+/5 ss. Still awake when I took over at 1:15am. Asleep around 2:20am; up again around 3:00am, 4am, and 5:40am! Can’t sleep probably because of all day resting. Asleep by 7:30am awake at 9am. shower resulted in major stinging!!! Positive: no headache. 3:08 pm 3/5 scratching

SKIN: During fever, skin was smooth, white, cleared 90% of redness/eczema areas, 0/5 to 1/5 scratching. When fever broke last night, 3+/5 scratching, scratched up legs, feet, and back again. Almost an oozy smell. ?? start of oozy phase, stinging, etc?splotchy redness and tiny red dots , scratches back again with renewal of scratching and decline in fever.

PM: 3/5 scratching most of day; lights out at 10:30 and still unable to sleep til after 12am; whiny, fussy, itchy, needy 3+/5ss. I left him downstairs with daddy cuz I couldn’t take it anymore

Day 216 Friday 5/9/14
AM: with 102.2 temp slept from 11:15pm last night to 1:30am; awoke for ice pack and 2/5 scratch. Slept til 3:30am and awoke with 2+/5 scratch. slept til 9:15am. 9:30am temp was 102.5. Still has headache 3/10 and occasional cough but not excessively uncomfortable. Still sleeping comfortably on couch with ice pack for headache.

ACTIVITY: Awake around 10am and rested on couch. By 2pm, 2/10 headache and 102.4 temp. feeling weak and dizzy. pushing fluids.

PM: early evening 102.4 fever. watched movies and rested. 98.6 by 10pm; 3+/5 ss;

scratching came back as fever broke. unable to fall asleep…still up at 1:15am

Day 215 Thursday 5/8/14
AM: Slept 12am-2am until awakened by 2/5 ss; again 2/5 at 3am. slept soundly until 9:30am. Eat, shower routine, itchfest 3+/5 with 4 reminders to use ice. I had to apply ACV on cotton swab to thighs–with screaming in the mix. some anxiety, itchy, today. tincture, mezereum, 2 tsp zyrtec. tried no sleeves today, but brought some just in case. Tried regular boxers today instead of long johns due to daily temp. increasing. got to school by 10:15 am. 2/5 ss. Good night of sleep, min scratching. But body clock is still off.

ACTIVITY: School 10:15am-12:30pm. Went home from school clinic with Headache and sore throat, “feeling weak.” Temperature around 12:45 pm was 100.6. 101.6 by 6:30pm, and 102.2 at 10:45 pm. Rested comfortably on couch, slept, watched movies, ice for head. trying to push fluids. o/5 to 1/5 ss.

PM: skipped shower; lights out 10:30pm, ice pack to forehead; 0/5 ss. Asleep by 11:15pm.

Day 214 Wednesday 5/7/14
AM: Slept from after 11pm last night to 1:30am. awoke with 2+/5 ss; slept til 6:30am, then to 8:40am. Eat, shower routine, itchfest 4-/5 with 4 reminders how to manage them. anxious, itchy, stinging today. tincture, mezereum, 2 tsp zyrtec. tried no sleeves today, but brought some just in case. got to school by 10:05 am. 2/5 ss. Good night of sleep, min scratching.

ACTIVITY: school 10:05-4:40pm, homework–3/5ss, batting practice, game 1/5

PM: tub routine; 2/5; asleep around 12am.

Day 213 Tuesday 5/6/14
AM: Slept 11p-4:45am before 3+/5 ss and needed bag balm on itchy feet/ankles, hot pack for cold. 1/5 scratch. 2/5 ss 8am; slept well until 9:30am, breakfast, shower routine, in school by 11:30am. Good night of sleep and minimal scratching, for the most part.

ACTIVITY: School 11:30am-4:15pm; homework; doc appt–hypn–groggy; home by 9:20pm—very sleepy.

PM:skipped tub; lights out 9:40pm but unable to fall asleep until after 11pm; 3/5 ss but with loud, irrational, emotional outburst/crying/screaming, “I want it to stop!”; wanting to sleep but can’t. Asleep maybe by 12am.

Day 212 Monday 5/5/14
AM: Slept 1:30am-5:50 am before 3+/5 ss of feet and thighs–>ice pack; brief awakening and request for bag balm to feet x2 through 8:11am. Soundly sleeping until 10am. Morning routine without trauma and drama (yay!), 2/5 scratching, at school by 12pm. Took mezereum pellets and 10 drops tincture prior to leaving for school.

ACTIVITY: School 12pm-3:50pm off the bus. 3+/5 ss. really tired, yawning after school. tough afternoon and evening 😦 4/5 ss after hot and sweaty w/ bb game. Seemed to have good energy when outdoors. must have been fatigue-last-ditch-effort energy.

PM: tub routine–>falling asleep in tub. lights out 10pm. ice packs for feet and hands/arms. asleep by 11pm.

Day 211 Sunday 5/4/14
AM: slept 12:30am to 4am with 3+/5 ss; up again at 7 and slept soundly til 9:50am. Shower routine. 2/5 ss

ACTIVITY: warm ups 12:30-1:30pm. 1/5 to 2/5 ss while in shade from 2:00 pm to 3:30pm. 3:30-8:30pm games continue, 1/5 to 3/5 ss; needed a cool towel or ice pack periodically but without anxiety. Hot and sweaty after pitching but his back did not sting or itch! He said he felt awesome! PTL! Brian’s team won the Triple Crown Border Wars Championship! 3/5 to 3+/5 ss on ride home.

FANTASTIC DAY in terms of scratching, emotional state, and function! Spent most of the day outside in beautiful 70-80 degree weather.

PM: Shower routine. Cleaned and dressed nail bed infection with mupiricin. Ice pack to feet and hands. Lights out 12:44am; asleep by 1:30am

Day 210 Saturday 5/3/14
AM: From 10:30pm last night to to 12:30 this morning, he scratched continuously and with great anxiety (5+/5) despite all our efforts–arms, legs, inner thighs, feet, and ankles. He woke again at 2:00am and 3:30am with 4/5 scratching (see Log for Scratch Scale) of his legs and feet that finally calmed with ice packs, bag balm, deep breathing, massage of acupressure points, and 50 mg atarax. Up by 9:30am. 3/5 ss

ACTIVITY: Warmups 11:30am, game 1:00pm , 2/5 scratching. By 4:30pm, back speckled pink with tiny red dots, feet dry and unbearably itchy, itchfest meltdown. We cooled him down with shade, an ice pack to his back, ice cube massages to feet and lower legs, deep breathing, acupressure to foot and ankle points, tincture, and Benadryl. Within 30 minutes, felt better and able to join in the second game and 1/5 to 2/5 scratching while on the field.

PM: Shower routine. Lights out 12am, asleep by 12:30am w/ 2/5 ss. CALMER, BETTER NIGHT

Day 209 Friday 5/2/14
AM: Asleep by 12:30am; icepack for 3+/5 ss at 2:30am and at 5:30am. Light sleep 6-8:00am w/ 2+/5 ss. Sound sleep until 9:40am. Got to school by 11am with no trauma and drama!

ACTIVITY: School 11am-4:10 pm off bus. Travel to NC for baseball tournament; 3/5 ss

PM: Hotel–From 10:30pm to 12:30am he scratched continuously and with great anxiety (5+/5) see post for details. Finally asleep 12:30am. REALLY BAD NIGHT!!!

DAY 208 Thursday 5/1/14AM: 3/5 SS at 1:23am; 2+/5 @ 3:15am; hot pack 5:30am; 8:30 3/5. Pretty good night sleeping; scratching was short duration and did not awaken him. Morning routine with loud anxiety/emotional stuff; 3 observed itchfests took 2-3 reminders to get ice to break trance. In car by 9:45am but car battery dead! Thankful for SAH mom friend who took him to school.

SKIN: very fine flakiness; dry but not cracking; abrasions stable/healing

ACTIVITY: School 10am-4:10pm off the bus. 3+/4 scratching to 4-/4 after school, interfering with ability to do homework. took a break. Played outside w/ friend; homework; batting practice.

PM: Tub routine; 3/5 scratch; 30 minutes to clean out nail bed infection–looking better. lights out 11:15pm. asleep by 12:30am.

Day 207 Wednesday 4/30/14AM: Asleep 12:00am to 5:30am with 0/5 to 1/5 scratching. Then 4-/5 to 3+/5 ss until 6am. 0/5 and sleep from 6-8am. Breakfast, shower, moisturize; itchfest and anxiety–>ice the itch, mezereum, tincture, shouting match; dress. Stress-filled morning. Got to school by 9:35am. Called me at 10:30am to say we forgot to treat his nail bed infection.

ACTIVITY: School 9:35am-4:10pm on bus; 3/5 scratching during lunch; 3+/5 after school homework; tv; baseball practice with dad–>got scratchy, but not too stinging w/ sweat; home around 9pm with 3+/5 to 4-/5 at home.

PM: tub routine; 10:05-10:53pm: drained pus-filled nail bed infection, cleaned w/ACV and distilled water, dressed w/ mupiricin and finger cot. Lights out 11pm, books read, asleep by 11:30pm.

Day 206 Tuesday 4/29/14
AM: asleep 11pm -1:00am; able to say good night to dad as I took over for night shift. Still sound asleep at 2:23am, 2/5 ss PTL! Asked for more covers because he was cold at 6:30am, 2/5 ss. Groggy awake at 8:30am. GREAT NIGHT of about 8.5 hours of relatively sound sleep and minimal scratching! Morning routine with 3-/5 ss, yelling only right before leaving, got to school at 9:35am.

ACTIVITY: school 9:35am-410pm rode the bus home. 3+/5 ss. Mini-meltdown after forgetting to do something at school. ate. calmed down. batting lesson. out with dad til 8:50pm. meltdown prior to tub. 3+/5 ss and calmed down a little but was “wired”

PM: 3+/5 to 4-/5 ss; Atarax 5tsp, 5 drops tincture, 2 mezereum pellets; Lights out 10:30pm; book read; lightly sleeping by 11:30pm w/ 2/5 ss. Asleep by 12am.

Day 205 Monday 4/28/14
AM: MUCH BETTER NIGHT! Slept 9:40pm-11pm last night (sunday 4/27.) Awoke for ice/heat pack and coconut oil to dry itchy areas 4-/5 scratch. File nails. Up again at 12:30am and 1:22am. Slept 2- 5:54am–>need covers, cold. 6-9am light-medium sleep with 0/5 to 2+/5 scratch. PTL!

ACTIVITY: Up and out of house by 11:15am for middle school orientation registration and pediatrician visit. School 1:30pm-4:10pm. Needed to get ice during science 4-/5. Homework, tv, batting & Xbox w/dad.

PM: tub routine, tv, atarax, lights out 9:35pm, asleep by 11pm, per dad who had evening shift while I took nap in prep for night shift. MOM START NIGHT NAPS again.

Day 204 Sunday 4/27/14
AM: BAD scratchy night! (Saturday night 4/26) Only temporary relief with ice pack, ice massage, coconut oil, and UNDA itch ointment. Slept from 11-11:42pm last night then awoke with 3+/5 to 5/5 scratching at 11:45pm, 12:30am, 1:14am, 2, 3, and 4:30am. Finally sleeping by 5:45am. Up at 7:15 am out of the house by 8:30am 3/5 scratch.

SKIN: during sleep hours he had a few abraded areas on dorsum of feet where he scratched hard: skin on back and legs w/ blanchable erythema and tiny dotted red spots–>rash vs. abraded crests of the pebble grain skin? After waking–>dry, flaky, multiple cuts

ACTIVITY: Played in baseball tournament 9am-5:30pm. 2/5 scratch on bench and 1/5 scratch when actively playing until 12:30pm. Then 3+/5 scratch–>restaurant w/ cool air, food, rest until 2:00pm. 2-5:30pm, game time again outdoors, hot, sweating makes skin sting and increase itch. Bravely held off itchfest, sting pain, and mini meltdown from 2pm-3pm by getting in shade, ice cube massage, ice packs, deep breathing, healing mantras. Worked through itch and sting to play good defense and complete a 4-pitch strikeout. By 5:30pm, 3/5 scratch, less anxiety, but tired. SKIN: abraded/scratched up areas on arms, elbows, back, feet/ankles. ACV bath, rinse, moisturize, movie. 3-/5 to 2/5 scratch. Lights out 9:30pm; asleep by 9:40pm ! PTL!

PM: Sleep 9:40pm-11pm. 4-/5 scratching, calmed, assisted by parent.

Day 203 Saturday 4/26/14

Scratchy all night per husband, who took the night shift because I’m working today. Woke up after 9am. Constant 3/5 scratching when I met them for a late lunch at 3pm but face/neck looked good. Been out in sun, watching ball & practicing w/ dad, sweating, itching, some stinging.

Forgot to take vitamins today. Once again trying to avoid and/or decrease fruit-sugar combo, egg, and dairy intake due to tested intolerance (5/2013) to 1st 2 and potential for 3rd to see if there is a decrease in itch.

Evening continues w/ constant 3/5 ; no attempt to calm it with ice, deep breathing, or remedies despite verbal reminders. I’m kinda getting fed up with lack of effort today, but he’s probably even more tired of having to deal with the itch and having to listen to me.

****Despite restless night, really good day attitude and activity-wise. Per husband pretty itchy all day. One mini itchfest after hot and sweating–> sat in car w/ AC on–> better

PM: tub, moisturize, movies. Lights out 10pm. Asleep by 11pm!

Day 202 Friday 4/25/14
AM: 4/5 scratch from 1:30am to 2:30am and 3am to 4am, without screaming/crying. Massaged feet with UNDA and coconut oil as well as helped scratch back, ice packs to itchy spots, tried to calm hands but no luck. Heavy sleep-scratching tonight. 3+/5 at 6am, 7am, and 8 am. Cannot get relief or sound sleep! After 8:30am–regular morning routine with 3/5 – 3+/5 scratch, remedies, ice. Got to school by 9:45am.

Activity: 10-12pm outside for field day–no sunscreen–hot/overcast/cool/hot at end. Brian sweaty and itchy 3+/5 to 4-/5 with anxiety face, couldn’t settle self. Took him home, cooled off, calmed down to 2/5. School: 9:45am-12:15pm

SKIN: After field day, red dotted spots over areas most scratched: chest, thighs, arms, legs. ACV bath 103 degree water 1 and 1/3 cup ACV to tub of water; x 10-12 minutes; luke warm water rinse; Skin looked better after ACV bath; light moisturizer (PJ) 1/5 to 2/5 scratch. Resting.

PM: heavy rains so movie marathon this evening. 3/5 scratching; lights out around 11pm per husband.

Day 201 Thursday 4/24/14
AM: Sleep-scratching 4-/5 to 5-/5 at from 2:54 am-3:30am; applied bag balm to feet, ice, acupressure points, smoothing behind the ears with little immediate effects. light awaking at 7am. Light sleep until 8:45am. Got to school by 10:15 am with 3/5 to 3+/5 scratching while getting ready but with anxiety. No real screaming today just disagreements.

Activity: school 10:15am- 4:40pm (patches of very light pink noted on neck but not as bad as it used to be.) 3/5 scratch at end of school. homework, tv, ball field with dad, tub, moisturize, movie

Skin: red patches on elbows (right worse than left) and dry, raised circular patch on right mid-forearm 4cm diameter; dry overall; pebble grain texture; evidence of scratching:

PM: lights out at 9:30pm; books ; 3+/5 scratching: ice pack, heat pack, remedies, more books; asleep by 11:15pm- light sleep with 1/5 to 0/5 scratch.

Day 200 Wednesday 4/23/14
AM: Up a few times with 4-/5 scratching. Got to school by 9:45am with no screaming match!

Activity: School 9:45am-off the bus at 4:10pm. Homework, snack, baseball practice 5:30-7:30pm, home by 8:30. ate apple pie and small flurry @ McD’s (fruit-sugar combo + more sugar and some milk) Tub, brush, homework. couldn’t finish due to increased scratching.

PM: Lights out 10:15pm. Tried energy medicine technique for insomnia, acupressure points, deep breathing/relax, etc. did not work this time–very restless, tossing, couldn’t get settled. ? if apple pie + mcflurry contributed to increased itching this evening and night? 4-/5. Asleep by 12am.

Day 199 Tuesday 4/22/14
AM: PTL! slept from 10:00pm (Mon.) to 12:50 am! BUT 4-/5 scratching from 1-2:20am with numerous moving from supine to long sitting. “Itchy all over, mama!” Massaged coconut oil on legs and feet, UNDA to itchy areas on shoulder blades, back and legs/feet; diluted ACV on cotton ball dabbed on and massaged into dry, flaky posterior scalp. Sleep at least 3-7am; light sleep until 8:15am w/ 2/5 ss. Breakfast, shower, moisturize, dress, brush, and at school by 9:30am! (despite itchfest trance from 9:05-9:15 and lung exercises (yelling) trying to get clothes on. back stings.)

Activity: school 9:30am-11:45am; doctors appointments at 12pm and 3pm; homework, play with friend 4:45-5:15pm; batting lesson + more swings 6:30-8:15 pm) short itchfest at his lesson. pulled self together and able to complete it. Overall a GOOD day.

PM: Movie, tub, moisturized, books. Lights out 9:30pm. Tried some relaxation/calming/deep breathing techniques: 0/5 scratching for at least 20 minutes while lying still, trying to fall asleep. Asleep by 11pm.

Day 198 Monday 4/21/14
AM: up scratching 3+/5 11pm; 4-/5 12am; 1am 4-/5; 2 & 3:30am 4+/5. Used coconut oil and UNDA on feet, legs, and elbows. Complained primarily of itchiness on dorsum of feet. Slept soundly 3:30-6:30am until 3/5 scratching. Despite scratchy wakeup nite, able to get showered, moisturized, breakfast, dressed, brush, and to school by 9:50am! 2+/5 to 3/5 scratch while getting ready and our usual lung exercises (yelling at each other.)

Skin: upper back texture back to “soft and smooth as a baby’s butt”; dry, light flaking; healing small cuts on foot/ankles from scratching; mild edema hands/legs; elephant skin from below neck to kneecaps; face, neck, and back of ears healed but with a few flakes.

Activity: school 9:50am-off the bus 4:10pm! Yay! homework, bike riding, practice ball w/dad, xbox, movies 2/5 to 3/5 scratching after school–no major itch fest! GREAT day

PM: tub, moisturized (light layer petroleum jelly,) books read aloud, lights out 9:30pm; asleep by 10:30 PTL!!!!

Day 197 Easter Sunday 4/20/14
AM: up to scratch around 3:30am and 8 am. Pretty good night. In shower at 9am.Wanted to try no shower since he felt good upon waking but changed his mind–>shower, moisturize, dress

Activity: brunch w/ lolo 1/5; baseball 1/5 to 0/5; xbox: movie 3/5; play with friend outside 3/5

Pm:3 books read aloud; 10:30pm lights out. Asleep by 12

Day 196 Saturday 4/19/14
AM: No itchy, screaming, thrashing–much better than past 2 days! Heat pack @ 4:20am, 2/5 ss overall. groggy 8:30am 2/5 ss. Out of shower by 9:45am (lukewarm temp. rinse)

Skin: Dry, lightly flaky, but better than yesterday; blanchable erythema posterior neck to feet

Activity: busy day w/ homework, play with friend 2-4pm, scrimmage game 4:30-7:30pm, out to eat. 2/5 w/ baseball 3/5 at dinner

PM: books read to him, asleep by 12am

Day 195 Friday 4/18/14
AM: scratching during the night, not much sound sleep. Hubby took night shift. Brian had some good sound sleep between 6am and 12:30pm and light sleep until 1pm. Brkfst; 1:30-2:15pm shower, moisturize, dress, brush teeth. Out the door by 2:20! (45 minutes fastest ever without trauma and drama! YAY!)

Activity: play at park with friends 2:30-4:40; movie, sweet frogs, home.2/5 ss during play, 1-3/5 during movie

Skin: extremely dry, flaking, patchy areas of differing thicknesses; texture pebble-grain and medium grit sand paper: shoulders, back, lower extremities, arms. Face and neck skin still doing well. areas on hands, elbows, and dorsum of feet with superficial cuts/scabs from scratching. mild edema in hands and feet. skin color changes from normal white to various small areas of pink (like on dorsum of hands) to blanchable light erythema on his back.

PM: Due to itchiness and some cuts, took ACV bath in 106 degree water, 1cup Brags ACV to full tub of water. Soak x 10-15 miutes. Rinsed with luke-warm shower (finally instead of hot.) Came out of shower without the usual screaming, itching, hysteria.No Dermasilk tonight. Light moisturizer (petroleum jelly) like we used to do. Lights out 10-ish, asleep by 10:30pm, up again from 1045pm until 11:30pm. Asleep by 12am.

Day 194 Thursday 4/17/14
AM: Amazingly asleep by 10:30pm last night (Wed.), but up at 1:30am and 3 am this morning with 3+/5 scratching and increased wakefulness from 3-430am. Then asleep until 830am. He was able to keep pyjamas on all night and said they helped. But He did not like feeling dry. Microsilk tub and dressed by 11am. 3/5 ss during day. Needs constant reminders to use conscious scratching technique suggested by his doctor.

Busy, active day, playing inside and out w/ friend 12-4:30pm; practiced baseball til 7:30pm; out w/ dad.

PM: home late–too tired for shower/tub–Dermasilk pajamas on. lights out at 9pm, asleep at 9:30pm!

BAD NIGHT!!! 5-/5 SS at 10:15-10:40pm stretching out pjs and scratching hard underneath the Dermasilk w/o moisturizer. Ice, heat, petroleum/psorinum remedies. Drinking h20. ? Nasal Congestion. 10:51 3/5 SS, awake; 5+/5 11-11:35pm crying screaming itching all over badly, but skin without redness, obvious rash. ice massage on tops of feet help. He wants to sleep but can’t. . .12:08 crying again

Day 193 Wednesday 4/16/14
Sleep/scratch: rough night with Scratching 3+/5 and tossing from 11:30pm to 1:30 am; 4-/5 at 4am and 5:30am; eyes open & not groggy at 8:30am eat, shower, moisturize, dress by 11am. Play with friend until 5pm; practice 6:30-8pm. 3/5-3+5 most of day. 8:30pm tub bath, tried on Dermasilk top and bottom. Had mini meltdown, itch/ crying fit because he didn’t want Dermasilk on w/o moisturizer. Angry about no movie because we needed to work on relaxation, deep breathing, visualization, calming the nervous system, and conditioning non- scratching behavior. (Dermasilk pyjamas too large and not adhering to skin like supposed to.)

Tired; listened to music and 3 books. Drinking H2O. Fell asleep briefly @ 10:15pm, awoke, then asleep again by 10:30pm. . Nasal congestion

Day 192 Tuesday 4/15/14
Worked on science presentation 2-3 hours on computer with 2/5 or no scratching until getting tired. Great job!

Sleep: fell asleep around 1:30am 3+/5 scratching

Day 191 Monday 4/14/14
Fell asleep after 12am due to increased scratching. Doctor appt today: working on desensitizing body to need to scratch

Sleep/scratch: More awake in am, scratching more ? Reaction to supplements?

Day 190 Sunday 4/13/14
Sleep/scratch: AM up 3:40am for ice pack 4-/5 SS for hands; 3/5 SS at 6:00am. In shower at 7:30am! greased, dressed, and out the door for Busch Gardens by 9:40am. 3/5 ss. In the gates by 11:15am.

PM: skin dry, 2/5 scratch c/o headache in evening; tub, lights out 11:00pm. 3/5 ice packs to back and head; hot pack to feet.

See post for activity. Need to retrain reciprocal armswing. Beautiful day! Happy boy! God is Great! After getting home, 6 hr movie marathon on couch–skin good, 1/5 to 3/5 SS.

Day 189 Saturday 4/12/14
Day 8 on Mg, Mo, B Complex; day 5 for glutathione; PCP–been taking Vit D3 2000iu; using only mezereum remedy for itching and UNDA ointment with varying success at stemming itch

Skin/itch/symptoms: very dry, flaky, constant itching but Brian does not scratch as ferociously as he used to. Brian says itching is no worse and could be a little better since starting supplements. but hard to tell. Initial few days after starting supplements, skin appeared to be a little more pink with tiny red dots or possibly abraded tops of the pebble grain? Today, skin looked less red after shower, fewer dots, cuts on dorsum of fingers healing. Primary itchy areas have been and continue to be Back (between shoulder blades around T5,) knees, inner thighs, legs, dorsum and medial and lateral aspects of feet

Sleep/scratch: AM-Hard time settling and falling asleep last night despite busy day 4/5 scratching from 11pm to at least 1am; 4-/5 at 3:10 am; 3+/5 at 7:30am, with light sleep until 9:30am. Eat, shower, moisturize, dress and out the door by 11:30am. 3-/5 scratch

Activity: Baseball practice 12-2:30pm 2/5 scratch except when struggling with batting 4/5; 3+/5 during lunch and watching friend’s baseball game; left 5:15 due to 4-/5 scratching–>used ice to calm it. Tv @ home 3-/5; left to watch another BB game 7:15pm-

Day 188 Friday 4/11/14 Sleep/scratch: harder time than usual falling asleep. 3++/5 scratch asleep at least by 1am. Scratching throughout night per husband. Sound sleep 7:30am-10:30am; more tire this morning 3+/5 to 4/5 scratching prior to school

School 1-4pm; play with friends outside, bike ride, walk 4:30-6:30; xbox til 8pm. Mini meltdown, c/o tired, 4/5 scr unable to do work. Tub, lights out 11pm but 4/5 to 5-/5 scratching, tossing, hard to get settled

Skin: dry and flaky; deep dry cuts along a few creases on knuckles; red raised rash and dotted appearance of back decreased. Texture like medium grit sandpaper; feel cuts healing

Day 187 4/10/14
Same shower/scratch/holler/dress routine prior to school

Went to School 12:00pm-4:30pm (HB 4-4:30); homework; baseball scrimmage 6-830 did great! Pitching, hitting, fielding. Happy and confident. Looked like normal, healthy self out there 1/5 to 2/5 scratch while on the field playing; 3/5-3+/5 when not.

Day 186 4/9/14
Sleep/scratch: AM slept soundly until 5-/5 scratching at 3:54am and again at 5:30am. mgs of scalp. More sound sleep 6am-9am; able to shower, eat, and dress (gradually) to make it to school by 11:05am Yay! despite 3+/5 scratching, primarily thighs, legs, ankles, low back. Tub, asleep by 12am.

Activity: School 11:05am-4:00; rode bus ; practice 6-8pm 2/5 scratching; homework

3/5 to 4-/5 scratching during evening; ACV to dry, itchy, flaky scalp; red petechia- like appearance of skin

Day 185 4/8/14Sleep/scratch: Lights out last night at 10:30pm; asleep by 12 am. 4-/5 scratching and cold pack at 1 am; 4-/5 scratching 5:30-6am, hot pack. In shower by 9:30am. Wanted to get to school by 11 but itchfests slowed him down. PM: lights out by 11pm; asleep by 1am.

Activity: 3+/5 scratching but attended school 12:30pm-5pm (HB 4-5); teacher said he did well in class, using ice pack for itch. Outdoor play with friend, homework, batting lesson–very active afternoon and evening. 3/5 to 4/5 scratching through evening.

Day 182-184 4/5 – 4/7/14
All 3 nights he got 3 or 4 hrs straight sound sleep, then rest was scratchy sleep from 12 to 6am.

Tried to get up at 6am and 7 am respectively on Sat and Sun. for baseball tournament. Able to do it with effort, but scratched 3/5 to 4/5 during day and had major itchfest meltdown around 2:45 pm on 4/5/14. Outside most of day. Got to play very little due to coach feeling like itch getting in the way of ability to play (though moving around probably would have been better for him than sitting.) Had to go home to rest, ice down. Couldn’t get up as early 4/6. On 4/7–very tired; scratch hard 6am, asleep til 9 am and then til 12pm. Not yet ready for regular early morning wakeups due to incapacitating mid afternoon itchfests that result from inadequate amount of sound sleep.

Skin: Looks like beginning of light oozing stage–>more moist than ooze ooze; increased shedding skin;

ACV (1 cup Braggs to tub H2O) baths x2 ok in place of bleach baths to prevent skin infection. ACV to scalp helped decrease dryness and scaling after 2-3 applications

4/7/14: started glutathione supplement.

Day 181 4/4/14
Sleep/scratch: Asleep by 12am; 4-/5 scratching at 2am and 4am, each sleep; 8:45am asked for hot pack/back scratch–>light sleep. Shower and out of the house by 11.

Skin flared, itchy. ACV bath at night. Lights out by 10:30; asleep by 12

See naturopathic doctor (ND) today to review genetic testing results.

4/4/14: Discontinue fish oils and probiotics for now. Started on remedies for itch, Molybdenum, Magnesium, B complex (tried biomat x 30 minutes) decreased scratching to 1/5 at ND office after petroleum pellets and biomat. 2/5 scratching resumed as we were leaving and back to 3/5 that evening.

Day 180 4/3/14
With effort, got to school by 12pm despite 3+/5 scratching. Had to get ice 2x, HB 4:05-4:50pm, but other than that Brian said, “I had a really great day!”

Lights out 10:45pm, 3+/4–>ice, prid, pressure points, deep breathing; Finally asleep @11:59.

Day 179 4/2/14
Sleep/scratch: 11pm-2am-3+5 scratching, screaming, crying “want to go to sleep but I can’t”; very anxious about dental procedure today. Asleep 2:30am-6:30am with 1 short scratch fest. Shower at 7:30am, calm down, dress, at dentist by 9. Under sedation, scratching was slow but constant. Failed attempt at dental procedure: couldn’t sit still due to itch. Medication wore off quickly. Night time tub bath. Asleep by 12:45am.

Day 178 4/1/14
Sleep/scratch: Slept from 11:30am last night until up for hot pack 3:30am. YAY! slept til 5am; 3/5 scratch hp 6:30a Shower in am; tub in pm; Lights out at 11pm. 11pm-2:00am battle of the wills (stopped oil on feet due to my perception that it was not “needed” but “wanted” feet were not itchy); 3+/5 scratch but screaming and crying about wanting to sleep but not able. Finally asleep by 2:30am

Great day! 2 ice packs needed at school, but able to go from 11:30am-5:50pm. Biking after school, batting lesson, watch friends play ball, good night.

Day 177 3/31/14
Sleep/scratch: Slept from 1-2am; up for 4/5 scratch @ 2 and 3am for 5-10 minutes; 5-5:45am 4+/5, esp feet–>scratch, massage, PRID, bag balm to heels. scratching hands, inner and posterior thighs, wrists, feet and ankles. 6-8 fairly sound sleep. 8:15 4-/5 scratching. Out of shower by 9:30. Unable to get to school til 11:30 due to multiple itch trances that slowed down dressing and getting ready to go. Asleep by 11:30pm tonight! YAY!

School from 11:30am-345pm. didn’t have to use ice. 3/5 scratch. Doctor’s appointment for scratch management went well.

**Bag Balm x 3-4 days has helped close dry, cracked achilles heel area

Day 176 3/30/14
Sleep/itch: 4/5 scratch at 3:30am then again at 7:30 am; 3/5 to 3+/5 during day. Microsilk tub by 10:30am.

Lights out 11:30pm 3/5 scratch; finally asleep 1am

Day 175 3/29/14
Tried apple cider vinegar bath tonight for 1st time! 1/2 cup to 1 tub water to prevent infection (in place of bleach bath); lights out by 12am

Day 174 3/28/14
Sleep/itch: 3+/5 to 4/5 until asleep @1am; 1:30am 4/5 light sleep, tossing, grinding teeth. Used ice cube massage to calm feet itch.

Day 173 3/27/14
Sleep/itch. Scratching from 11:30 pm until finally asleep around 2am. 3/5 scratching thru night. 5-5:30am 4+/5; finally sound sleep 6am-10:30 with occasional quick awakenings. 3/5 thru day ; 3+/5-4/5 evening. Microsilk tub. Lights out before 12. Very itchy.

School by 1pm for sol; baseball practice; good day w/ attitude

Skin: red back after sol; cuts on bil feet bothersome. Looks like skin infection. Md says not. Start bleach baths again

Day 172 3/26/14
Sleep/itch: 3+/5 scratching throughout night. Some sound sleep 12:30-1:30 am, 4-5:30am, 7-11am; very tired in am and did not make it to school. Finally got up by 3pm to make it to eye doctor. Very emotional today 3+/5 scratch. Shower in morning. No bath or shower in evening. Lights out around 11:30 pm.

Skin: dry, flaky, some “pinkness”; pebble grain hands/feet; upper back getting soft and smooth again; face/neck good

Day 171 3/25/14
Sleep/itch: Slept from 12:30am to 4am, awakened by some hard scratching for a few minutes then back to sound sleep til 6am for heat, ice pack for hands, coconut oil to itchy feet, and assist to get the back YAY! Still sleeping soundly and it’s 9:36am. Maybe the atarax worked this time.

Able to get to school by 1:15, take SOLs, go to pediatrician, homework, and play 3+/5 scratch during day. Cranky and emotional toward the evening. 4 tsp atarax 9:30pm.Lights out 11:30 finally got to sleep at 12:30am–3/5 scratching

Day 170 3/24/14
Slept from 11:45pm to 3am PTL; itchfest 4/5 lasted from 3-5:30am; light sleep til 630am; then sound sleep until 10am. Shower in AM, stinging, itching 3+/5, redness on back like raised rash–Fukaya, UNDA on trunk and low back for itch, pj.

Able to get to school by 1:15pm and stayed till 5 for HB instruction; 3+/ by end of day, skin more pink and dry/flaky where scratched. Splotchy, red, more itchy toward end of night.

Microsilk tub this evening–better skin quality afterward. 4 tsp atarax around 10pm; asleep by 12:30am.

Day 169 3/23/14I went to work today. A lot of scratching and very little sleep last night according to hubby. 3+/5 scratching during day; fussy in late afternoon due to fatigue and lack of sleep. 2/5 to 3/5 in evening; asleep by 11:45pm

Day 168 3/22/14Sleep/itch: Lights out last night 11:30pm but fell asleep around 1:30am. Slept til 5:40am!

Skin/itch: dry, flaky, no new cuts; elbow cracks slowly healing. Shower (hot) this AM, skin more pink than when out of tub and some dots on left cheekbone. Fukaya, pj, UNDA on feet, very light layer pj on back. Needed ice cube massage over tops/sides of feet to relieve itching as well as inner legs/calves, otherwise 2/5 scratching

Able to get up and get ready for 11 am baseball practice! PTL! Beautiful day for it.

Day 167 3/21/14Sleep/itch: Finally fell into sound sleep 3:30am-5am, 6:30-8am, and 9-10:30am; in between he was 3+/5 scratching especially his chest. 4+/5 scratching while getting ready to go to school btwn 11and 1pm; did well at school–didn’t need to use ice or heat today! PTL! 2+/5 to 3/5 scratching during afternoon/evening (best it’s been in a while). Lights out around 11:30pm but not asleep.

Skin: dry, flaky, pebble-grain texture this am, though upper back was soft as baby’s butt around 8am; facial/neck skin good–no cuts; dotted red spots on chest, upper back, arms/legs ?? skin infection vs. abraded peaks of the pebble-grained skin? Microsilk tub, Prid, Fukaya, petroleum jelly, ice packs;. Shower in evening instead of tub. Did fine.

Activity: School 1-3:45pm; bike riding, practice pitching, homework with x-box rest breaks

Day 166 3/20/14
First Day of Spring!
Sleep/itch: slept from 12:30am-12:50am; up 12:50-3:30am 3+/5 scratching and very little sleep; sleep 4-6:45am; light sleep til 9:30; ate breakfast; “tired”; sound asleep until 1pm; lights out 11:30pm but continued to be awake/scratching 3+/5 through out the night.

Not much good sleep last night. Brian’s exhausted, but at least there is no burning/stinging/thrashing flare that came with previous attempts at 1/2 days. PTL! However, he was unable to go to school even 1/2 day due to fatigue/lack of sleep. HB instruction 4:30-5:30pm and he had a mini itchfest 1/2 way through

Day 165 3/19/14
Sleep/itch: asleep 11:00pm-12:30am, then 3+/5 scratching < 5 minutes; up 1:15am 3+/5 scratching until 2:30am; up again 3:30 4/5 ss Prid. Deep breathing to calm nervous system. Dropped off at school around 1:15pm to try half day; scratching head/neck 3/5 which increased to 3+/5 as he waited in cafeteria with classmates for teacher, a look of distress on his face. provided him with hotpacks, ice packs, water spritzer, towels, and pj for itch management. Did relatively well at school for the 3 hrs he was there. Teacher said he started scratching more towards the end, but skin was not affected like on previous attempts at 1/2 days. Brian said he felt pretty good. He used the ice and heat to manage the itch during class.

Day 164 3/18/14
Lights out at 11pm, awake with 3/5 scratch, asleep 11:59pm

Day 163 3/17/14
Sleep/itch: Woke up 12:38 am with

Day 162 3/16/14
Able to make it to 9:45am game but very tired, “I didn’t sleep, but I rested a little.” Energy and attitude ok until after 12 when scratching increased, and the look of distress appeared on his face. Skin on trunk slightly pink/white with petichiae-like dots from scratching. 3+/5 1:15pm-3pm, with occasional 1/5; became more emotional due to lack of sleep/fatigue; minimal to moderate flaking scalp/neck. Cold and windy outside, but at least he was able to be with his teammates and get some exercise, sunshine, and fresh air. Later in the afternoon after resting and getting indoors, attitude and energy improved. 3/5 ss

Lights out 10:45pm and finally into light sleep at 11:55pm.

Day 161 3/15/14
Sleep/itch: 3/5 scratch throughout night; fell asleep in tub bath but able to get himself together to make it to 10am game PTL; 3/5

Skin: dry, flaky itchy; no new major scratches; a little splotchy pink on face

Able to participate in 10am and 12pm games, sunny, windy, 50’s and 60’s. Fresh air, sunshine, and activity good for him. Started to increase scratching toward end of 2nd game; 3/5-3+/5 during day but activity kept him more upbeat and less focused on the bothersome itch. Energy better and skin better than it had been earlier in the week.

Day 160 3/14/14SLEEP/ITCH: Asleep by 12:05am til 12:35am for ss and 3/5; asleep 1-3:30am, ss, asleep 4-5, ss, 3/5; asleep 5:30-6:30am, ss; 7am-930 sound to light sleep with intermittent ss. No hour-long itchfests tonight just several bursts of heavy scratching followed by calm again. 1st baseball tournament tomorrow so tried lights out at 10; scratched until falling asleep at 1am.

SKIN: exfoliated large flakes off bilateral dorsum of feet; dry and flaky; linear crease cuts in hands and feet healing; tiny red dots on chest/legs

Energy a little better but still very itchy; completed classwork by answering questions aloud and my writing down the answers while he used both hands to scratch. itching/scratching worse when sitting still

Day 159 3/13/14
SKIN: Forehead/eyes less flaky today than past few days; facial and neck skin intact; healing small linear cuts on hands, feet, and trunk; heels cords especially dry; elbows with large adherent flaking; LOTS of shedding on and off sheets today; pinkish red coloration after tub bath; no c/o burning or stinging, just itchy heels, dorsum of feet, and back along spine. Used Prid for itch relief to thighs, knees, and feet and Fukaya liquid on his back. as it dried, Brian applied petroleum jelly over all dry parts because the dry skin did not feel good

Sleep/itch: atarax 3tsp; calm scratching, trying to go to sleep 12:30am-3:30am; light sleep til 5am; intermittent sound sleep til 1230pm. ready for the day by 2pm. 2/5 scratching with classwork, increasing to 3/5 as day went on. He reports he feels better today and the itch is not as bad. PTL! 3+/5 with classwork; 1/5 x-box; lights out at 11:30 with 2/5 ss and asleep by 12:05am. WOW!

Other: more energy today, almost like his normal self

Day 158 3/12/14
SKIN: dry flaky face; multiple red but dry areas of scratching on hands, legs, arms, esp feet, chest. even though skin is stronger, it breaks down after several hours of constant scratching. complaint of very itchy feet with trance like itching and pain/stinging all over. today is way better than yesterday (day 157,) where he spent a good part of the morning crying and screaming in itch and pain. despite various modalities, benadryl, atarax, nothing helped except couch rest yesterday. today itching was 3+/5 to 4/5 with just one instance of a yelp. i had to write down homework answers so he could use his hands to scratch, otherwise he could not focus and the work would not be complete. Tried PRID drawing salve which helped stop itch on certain parts for about an hour.

Sleep: atarax 3tsp; lights out at 12pm last night and slept soundly until 1:00pm; itchfest from 1:30-3:30 or 4pm 3+/5 to 4/5 then asleep until 8am, 9, 11, 12pm. in tub by 1:15pm; ready for day by 2:30, but itchfest occupied both hands and made focusing tough.

Other: able to do homebound instruction 4:30-5:30 today and went to baseball 6-7pm. able to do more today, less painful, skin more tolerant of wind hitting it outdoors, itch still present but not incapacitating like past 2 days. 2 tsp benadryl given earlier

Day 156 3/10/14
SKIN: upon waking and after bath, skin looked ok, not too many scratches but powdery dry especially on forehead, face, around eyes; major itch attack resulted in open areas to knees, elbows, dotted red spots and a scratch on chest

SLEEP/ITCH: lights out 12am; 2/5 scratching/awake til 1:30am; sleep til 2:30;scratch back, itchy feet-> hot pack, coconut oil; 4:30am hot pack, 2/5 scratch, light sleep til 8am, hot pack; sound sleep til 10 and 10:30-1130; light sleep til 12;30; 1-330 prepare for day; 4/5 to 5+/5 itch; not fun for anyone; itching badly–>cancelled homebound, quit Boy Scouts (unpredictability of flares doesn’t allow you to plan plus too much on his plate–need to reduce stresses); ended up exhausted on the couch all afternoon and evening.

Other: Started 2000 IU vitamin D3 per pediatrician recommendation; took fishoils; 2:35pm took 2.5 tsp acetamenephin to try to calm itch along with ice packs

Day 155 3/9/14
SKIN: Dry, flaky, but not too bad considering the 3 hour itchfest last night. Stayed same during day, not too red until after baseball practice when posterior/anterior neck increased redness and flaking, scalp very dry/flaky.

SLEEP/ITCH: BAD NIGHT Lights out 12:30am this morning; asleep 1:00am; 2:30-3:30 steady itching; 3:30-4:30 5+/5 ferocious itching, thrashing, screaming, “It ITCHES!!!!”crying; 4:30-5:30am lighter, intermittent scratching All this despite hot packs, ice, coconut oil, massage, Dr. Fukaya liquid, petroleum jelly, accupressure, deep breathing attempts; 5:30-7:30am, light sleep, minimal scratching then sound sleep until 10:30am. Very emotional getting ready for baseball 11-1138am; 3+/5 scratch

ACTIVITY: Had to ace wrap left arm due to excessive scratching; 1/5 to 2/5 scratch at baseball practice 12-2:30 in the sun–did well–until end 3+/5 and increased redness on neck, increase scratching. Went to movies and got out at 4pm. Itching on dorsum of feet/ ankles 5/5, yelling/screaming in the car during 15 minute ride home. Applied ice; 1.5-2hr nap; better afterward. 2/5 scratch. Movies, candy crush, light activity til 11:59pm.

Day 153 3/7/14
SKIN: skin very slightly oozy patches over BIL elbows & shoulder blades, small dotted cuts on arms/legs, a few nicks on BIL ankles; dry; light flaking head to toe, greater on his back. 1:30pm bath helped decrease the red, cuts were barely noticeable when he got out. Back, face, and anterior neck looked great. Small cuts in the creases of hands and feet still present. Pebble-grained texture on dorsum of BIL hands & feet. Elephant skin on back & BIL elbows & knees

Used Dr. Fukaya’s skin repair fluid on skin right after bath and followed with small amount of petroleum jelly when needed.

Sleep/Scratch: Up scratching 2am and 5:30am, hard scratching of chest, hands, and occasionally neck. Very tired today–sleep 6:30am-11:30am with wakings. Able to get up by 1:30pm 3/5 to 4/5 scratching

Day 152 3/6/14
Skin: Facial and neck skin relatively intact despite night scratching and rubbing. Cheek looked oozy at first with an abrasion but the miracle tub took care of that. Hands and feet with multiple small slit-like cuts. Popliteal fossae edematous and with slit-like cuts at creases. Bilateral elbows a little cracked and reddish. Skin dry with powdery flakiness. Skin very sensitive–towel rubbing on it or pulling on clothes is painful.

Sleep/Itch: Lights out 11pm on 3/5/14; asleep 11:30-1:30am; 3+/5 itch 1:30a-2a; asleep til 5:30am 2/5 itch; sound sleep/1/5 scratching 6:00am-1155am. Stinging, itching, & emotional state start off another “fun” day.

Day 149 3/3/14Skin: Despite the scratching, his face, neck, back, and chest are relatively soft and free of cuts, except his low back which has a leathery feel. Thin cuts present at the tops of both ears where they attach to his head. Pebble grain texture on both arms, lower legs, and dorsum (tops) of hands and feet. Color-pinkish to near normal head to toe.

Very minimal flaking right now. Scratch rating 0/5 – 1/5 with x-box; 3/5 without

Day 147 off TS, but the itching is relentless. I try to remind him (and myself) that it is a sign of healing like they say on the forum. The shedding continues, though sometimes it is only 1/4 cup of dead skin crumbs instead of a cup. The increased night time scratching/inability to sleep and the need to sleep into the day continue. BUT there are improvements.

1) He is not constantly red head to toe all the time;

2) Temperature dysregulation is gone for now: he can run around in shorts in the snow again and not be cold;

3) The skin on his back can be as smooth as a baby’s butt 75% of the time and switch to pebble grain texture at other times;

4) Skin on his knees and elbows is thicker, and knees are not scratched up, scarred, and hypo-pigmented;

5) His skin seems to be not as thin because even though he scratches hard and furiously, he is not scratched up like he used to be;

6) Most of the time his overall energy level is better, and we are working on getting his strength and endurance back.

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