Eczema and Skin Management at 35 months TSW (Topical Steroid Withdrawal)

Skin and itch management at 35 months TSW seems pretty simple compared to our treatment and skin/wound care routine at 5 months TSW seen here.

Brian’s current regimen has been as follows. This will likely change (again) as the weather gets cooler, the skin dryer, and the “eczema season” begins once more.

Goals:

  • To keep the skin clean, hydrated, and infection-free
  • To utilize effective itch/scratch management to prevent breaks in the skin
  • To support the body/skin via taking needed vitamins/supplements, monitoring sugar and dairy intake, and getting proper nutrition/hydration, exercise, and sleep
  • Utilizing stress management and deep breathing techniques

Treatment/Skincare Routine: At least once daily shower, followed by application of organic coconut oil (face, extremities, trunk). Hot summer months require a “lighter” moisturizer.

***Lately Brian’s been able to go without using coconut oil (or any) for moisturizer. He still uses it as sunscreen for face and exposed areas when playing baseball.

Infection control measures:

  • Apple cider vinegar (ACV) bath (10 minute soak) or 20 minutes in microsilk tub bath 3-5 times per week,  followed by shower/rinse off and coconut oil or nothing
  • Spray sovereign silver, as needed, on any open areas or broken skin.
  • If all other measures fail and skin/itch worsen, short term oral antibiotics have helped, but thankfully he hasn’t needed them much. In fact, he needed antibiotics more often when he was on topical steroids for his eczema.
  • Change sheets every day

Vitamins/Supplements/Diet: Vitamin D3, Omega 3 fish oil capsules, recommended by pediatrician;  pantothenic acid, DAO histaminase, B complex, culturelle probiotic–supplements prescribed by naturopath to address methylation issues (difficulty processing histamines and sensitivity to eggs, dairy, and fruit-sugar combos) and provide gut support; try to monitor dairy, egg, and processed sugar intake

 Itch/scratch management: Generally 0/5 to 2-/5 scratching (See log for scratch scale.) Cut and file fingernails short. Deep breathing/relaxation techniques, acupressure points, ice packs, distraction. He will use benadryl liquid as needed but hasn’t used it in months.

If needed for >3/5 scratching: Dr. Wang’s purple eczema ointment, The Home Apothecary’s lemongrass balm, moisturizer such as coconut oil, or sovereign silver gel/spray–haven’t needed these lately

Remaining TSW symptoms: (compare to March 2, 2014 at five months TSW and 28 months TSW. )

  • Shedding—As in past 2 summers, progressive decrease in visible, measurable shedding from end of June to now (beginning of September). Now shedding is almost imperceptible even when shaking sheets in morning.
  • Elephant skin—not evident in July, August, or early September
  • Red sleeves, edema—none noted this summer in upper or lower extremities compared to January/February 2016 (feet) 
  • Ooze smell—light to strong ooze smell in May and June but none too obvious from July to now. Heavy night sweating with faint ooze smell was also absent the past few months.

Skin quality:
–Back is soft, smooth but has intermittent eruptions of erythematous papules scattered on posterior scapulae and low back–haven’t pinpointed the trigger

–Shoulders, elbows, knees textured with scattered hypopigmentation from scratching on tan skin. Dry but no obvious flaking

–Still with periodic small breaks in skin on shoulders, elbows, hands, or knees from scratching/picking

–Able to play in the sun and heat and sweat like the best of us–without freaking out

See 9/6/16 pictures

Function: Sleeping through the night (roughly 10:30p-7am). Staying active with 8th grade, travel baseball with 2x/week practice,  cross country, church, golf (which he took up on 8/30/16). Overall, he’s doing well despite “not perfect” skin, but then, no body’s perfect! 🙂

We are very thankful that Brian’s skin is no longer limiting his participation in or enjoyment of activities. So, is TSW finally over? Only time will tell. Fall and winter are just around the corner, and we’ll have to wait and see what symptoms arise with the lower humidity and cooler temperatures.

In the meantime, we’ll continue to praise God for his healing touch, live beyond the itch, and “Play ball!”

You make me glad by your deeds, O LORD; I sing for joy at the works of your hands.”

Psalm 92:4

2 Home Runs and 35 months TSW

It’s hard to believe that it’s already September! Summer goes by fast when you spend it traveling from one baseball tournament to another, a family reunion, and two weddings–in 4 different states. Thankfully, we’ve been able to do it all, and Brian has weathered the heat and humidity of summer like a champ.

Brian’s team, the Virginia Breeze Elite, brought home the Cal Ripkin championship trophy and came in the top 8 of 104 teams at the week-long Cooperstown tournament in NY. The stay in the barracks and uniforms washed by the staff challenged his skin, but he at least came out no worse than he went in: 0/5 to 2+/5 ss (scratch scale) and minimal shedding.

Also, he hit his first and 2nd home runs ever that week, contributing 2 to the team’s 44. He batted .611 in 6 pool play games–a fitting end to his “little field” career and a testament to how far he’s come in his TSW journey. Thank you, Jesus!

“But one thing I do: Forgetting what is behind and straining toward what is ahead…you should stand firm in the LORD, dear friends!” Philippians 3:13, 4:1

Virginia Breeze Elite 12u Cal Ripkin Champs

Virginia Breeze Elite 12u Cal Ripkin Champs (Brian is kneeling, 2nd from the right)

Cooperstown 2016

Cooperstown 2016

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Edisto Beach, SC

Edisto Beach, SC

 

Eczema Herpeticum and 27.5 months TSW

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Don’t let TSW keep you down!  1/24/16

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1st snow of 2016 (1/23/16)

IMG_2157A belated Happy New Year! As I write this post on a snowy day, 27.5 months into Brian’s Topical Steroid Withdrawal (TSW) journey, I can’t help but give thanks and praise to God again for finding the International Topical Steroid Awareness Network (ITSAN) in the Fall of 2013 and for the many friends I’ve made in the TSW Facebook support groups. The support and exchange of information with TSW warriors and parents of other child TSW warriors like Brian have encouraged me to keep fighting for:

1) Recognition in the research and medical community of Red Skin Syndrome/Topical Steroid Addiction (RSS/TSA) and TSW in children;

2) Appropriate labeling of products containing topical steroids (TS); and

3) A change in the American Academy of Dermatology (AAD) atopic dermatitis treatment guidelines that facilitates the prevention, early detection, and treatment of RSS/TSA and TSW in children and adults with eczema.

We’ve got a busy year ahead! 

Today is Brian’s 842nd day free of topical steroids (TS) for eczema. Overall, he is functioning very well, participating in extracurricular activities and school like any other 7th grader. His skin is still healing, but the skin and itch continue to be a seasonal challenge. “You need to follow summer,” says his pediatrician, who has been supportive in this process. So true. Brian’s skin is almost normal in the summer months as seen in these pictures from 2014 and 2015. Florida or the Bahamas may be in our future….

As you may know, the fall and winter months are particularly hard on the skin, especially eczematous skin. There is an increase in dryness and itching, and distinguishing between “true eczema” and “residual TSW” at this later stage is tricky. However, I believe he’s still got a bit of both. The underlying eczema seems to be reemerging (dry skin, itching), especially with the below freezing weather we’ve been having lately, but along with it continue signs and symptoms characteristic of TSW: Full-body shedding, red sleeves, elephant skin, “ooze” smell during night sweats. Pictures are below. (See FAQs for a full list of TSW symptoms.) This was particularly evident during Brian’s first experience with eczema herpeticum right after Christmas.

SKIN INFECTIONS  Thanks to the discussions about eczema herpeticum (EH) in the Topical Steroid-Red Skin Syndrome Support Group and with other moms on Facebook, I was able to suspect it as soon as Brian showed me those tell-tale vesicles and get him to his pediatrician right away. EH is a serious skin infection that can be life-threatening if not treated. Thankfully, his pediatrician was knowledgeable about it and prescribed timely treatment. He also said there was likely a secondary staph infection. Brian has not had a skin infection that required medication in quite a while, and this time he got a double whammy! Rx: antiviral +antibiotic+good skin/wound care.

Details and treatment are found in the LOG under Day 841, but the progression photos are below. It’s incredible how quickly the acyclovir cleared up the vesicles and pustules–gross! I know, I know!–and the scratching was noticeably decreased. I’ve always liked Brian’s getting a fever because he is never uncomfortable, and he stops scratching. He did develop a slight fever  (<24 hrs) which gave his skin a little respite from the scratching, but we knew his fever was breaking when he started scratching again, though much less than before treatment.

CLICK on any picture to enlarge.

 

 

 

 

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SIGNS and SYMPTOMS that suggest TSW continues

1) Elephant skin

2) Red sleeves, edema, and blanchable erythema

3) Full body dryness, flaking, and measurable shedding of skin. (See shedding pictures in a past post.)

What’s horrific but fascinating about TSW is the marked and frequent changes in skin quality and appearance. Brian’s skin texture on his back and extremities has fluctuated between pebble grain, coarse sand paper, plasticky dry, and fine sandpaper. Just the other day, his entire back felt as soft and smooth as a baby’s bottom for two days. Now, it’s back to a pebble grain, sandy texture again. This is why we need doctors to study RSS/TSA and TSW. WE see all this rapid skin cycling 24/7, 365, but they can’t see the full sequelae in a brief clinic visit. Current pictures of his feet show a disappearance of the red sleeves, for now.

Even though he’s over the skin infection, we’ll continue our treatment regimen outlined in Day 841 in the Log. The main goals are to keep the skin clean, hydrated, and infection-free and to minimize itching and the damage caused by scratching, while enabling him to get adequate sleep and be as active and functional as he can be. Yeah, no problem. 😉

Don’t let TSW hold you up!IMG_2154

"Hi Ho, Hi Ho, it's off to work we go...." 1/25/16

                                  “Hi Ho, Hi Ho, it’s off to work we go….”

Stay strong, persevere, and keep the faith!

I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world!”  John 16:33

 

TSW Update: 26 Months Free of Topical Steroids

December 6, 2015 marked 26 months since we stopped using topical steroids (TS) for Brian’s worsening eczema and deteriorating health. Throughout topical steroid withdrawal (TSW) and our attempts at using various alternatives to TSW eczema/itch management, Brian’s pediatrician has been supportive. I thanked him for working with us and not belittling or disrespecting us as other doctors have done to other parents of children going through TSW. He said that his main goal is to have a child be able to live, play, have fun, and do all the things children are supposed to do; whatever route that entails does not matter as long as it works for the child. Thank God for good docs.

Current function
Energy and activities–Running, jumping, laughing, playing, and getting cuts, scrapes, and broken bones like a normal 12-year-old boy. Finished strong in travel baseball and cross country. Playing basketball for the winter.

School: Stays up way too late but manages to get up every morning to walk to the bus stop with friends–even in 30 degree weather. Picking up where he left off last year, he made straight A’s on top of all his activities and despite the eczema/TSW spectre. We’re very proud of our TSW warrior for his perseverance and attitude through the toughest of times. Give yours an extra loving hug today!

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Cross country (Brian 2nd from left)

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Feet still intact 12/2/15

But return of the full-body, measureable shedding of skin and…IMG_1921

plasticky elephant skin! IMG_1932

Challenges: Fall and Winter weather wreaks havoc: increased dry, flaky skin, makes skin itchy. Return of full-body, measurable shedding of skin. At night, one can palpate the heat emanating from his body and a dampness in the sheets like the oozing days of old, but not full-on ooze. More like sweating with the slight scent of ooze.

Scratch/Sleep: Compared to Summer, the frequency of scratching this Fall has increased: 0/5 to 3/5 during the day and 0/5 to 3-/5 at night, with or without erythema. Sleep is disrupted during the night again, general between 2 and 3:30 am due to scratching or being cold, and some nights he does fine. I just reapply the balms and oils and he falls right to sleep. Then I go on the computer to do more writing and researching.

Skin quality: varies from looking good with normal color to dry, flaky eczematous areas or head to shin (basically full-body) patchy erythema with dry shedding skin. This skin change can happen day to day or within 12 hours of each other. There are fewer regular scratches on skin. Tough areas are shoulder blades from night scratching.

Still TSW or just eczema now? Only time will tell, but to me, the elephant skin, full-body shedding, and ooze-related dampness indicate that TSW is not totally done; better, but not over yet. The eczematous symptoms, themselves, do seem seasonal, though, when I compare Log entries from October-December 2014 to the skin events October-December of this year.  It’s incredible how similar they are, even to the time of onset! And so we march on….

Current treatment
1) Prayer and thanksgiving
2) Skin care
Moisture maintenance: daily shower or bath, pat dry, immediate application of coconut oil to face, neck, trunk and the Home Apothecary’s lemongrass balm or breezy balm made specially for Brian by Stephanie. Same moisturizers after school, at bedtime, and during the wee hours of the night.
Infection control: periodic ACV baths (apple cider vinegar with “the mother”) or microsilk tub baths; application of mupirocin on open cuts if needed; lemongrass balm
Itch/scratch management: File nails to the nub; moisturizers above; itch-b-gone spray; ice packs; accupressure points, deep breathing and CBT techniques (cognitve behavior therapy). Recently started using a humidifier in his room at night due to humidity level less than 40%, which is extremely drying to the skin
3) MTHFR/Vitamins/Supplements–inconsistently taking b complex, vitamin D3, Zinc, NAC and 1/2 tab glutathione
4) Diet–not as good as it could to be but at least drinking water regularly

TSW is a rollercoaster ride through hell, but as with all rollercoasters, it will come to an end. Thankfully, we have met some incredible people along the way, and the strength that we’ve gained and the lessons we’ve learned will be beneficial to us and to others one day. Beyond the itch, life is good.

Have a blessed Christmas and a TS-free, Happy New Year!
Rosemarie

“I will restore you to health and heal your wounds” declares the LORD.
Jeremiah 30:17

705 Days Free of Topical Steroids! The TSW Journey continues…

As a last salute to a summer that went by way too fast, we took a cruise with some friends to the Bahamas and visited my mom and family in Charleston for 8 days of sun, food, and fun. I decided to leave my militant TSW rituals at home for the week to see how Brian’s skin and scratch would fare (see Log dated 8/30/15). Maybe it’s just a summer thing–like last year–but his skin got better and his scratching was no worse despite heat, sweat, sun, and water. See pictures dated 8/27/15. It was a nice vacation from our TSW routine and “itch-think”, and Brian spent all his waking hours playing ping pong, eating soft serve ice cream, and having a blast with his friends.

We’ll continue the experiment of no vitamins/supplements while monitoring energy, function, skin, and scratch. Hopefully, we’ll be able to discontinue the daily vitamins and supplements (which is like pulling teeth to get him to take anyway) which will simplify our routine.

TSW is very unpredictable, especially in the later months like 22 and 23+ months out. You think you’re finally done with the cycles and are healed, then BOOM! the full-body symptoms are back again, as if you were in the horrific early months of TSW. For this reason we are thankful for any and all good skin and itch times.

October 2015 will be Brian’s 2-year anniversary of stopping TS. Beyond the itch, he has definitely come a long way. Praying for strength, endurance, perseverance, peace, and healing for all TSW infants, children, adults, and caregivers. Never lose hope!

Those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary; they will walk and not be faint.”  Isaiah 40:31

Sunset in the Bahamas 8/26/15

Sunset in the Bahamas from the highest deck on the ship (taken by Brian) 8/26/15

8/26/15

8/26/15   Paddle boarding in Freeport 

Paddle boarding without a paddle in Freeport, Bahamas 8/26/15

Paddle boarding without a paddle 

Ping Pong on the beach

Ping Pong on the beach

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God’s gift of good friends

TSW Champions Beyond the Itch

Brian and his team, the Virginia Breeze Elite, competed in their final 11U tournament of the 2015 season: the Triple Crown Summer Nationals in Myrtle Beach, SC. During the week, the temperatures were in the mid to upper 90’s and the humidity so high it was stifling. One day the heat index was 108 degrees, yet the boys played on, and Brian’s skin and itch were not an issue. They went undefeated, battling back through games that should have knocked them out of the tournament. Brian played in one game that lasted 9 innings, after a score of 0-0 in 6 innings of phenomenal play by both teams!

Whether you are in the horrific early stages of Topical Steroid Withdrawal (TSW) or in the later stages, wondering if it’s still TSW or now “just eczema,” don’t lose hope; don’t give up! Focus on the life beyond the skin and itch, and–itch or no itch–live each moment to the fullest. Faith. Patience. Perseverance. Victory will be yours!

In winning the Triple Crown Summer Nationals in Myrtle Beach, the Virginia Breeze Elite finished the season 42-1, taking home 7 of 7 11U championships in 4 states, besting teams from Ohio, Delaware, Maryland, NC, VA, Georgia, and Venezuela. Next goal: Cooperstown 2016!

In winning the Triple Crown Summer Nationals in Myrtle Beach, the Virginia Breeze Elite finished the season 42-1, taking home 7 of 7 11U championships in 4 states, besting teams from Ohio, Delaware, Maryland, NC, VA, Georgia, and Venezuela. Next goal: Cooperstown 2016! (Brian is in the front row, last on the left.)

“Thanks be to God! He gives us the victory through our LORD Jesus Christ.”                     1 Corinthians 15:57

A little break from shedding, but those feet are a real ITCH….

One would think that after 19.5 months of TSW the full-body shedding would have stopped. Completely. NOT! Well, it did from TSW months 6-9, but it came back, steadily increasing to a flurry over the winter months and, finally, this past week we’ve seen a measurable decrease.

It has decreased from about a teaspoon of nightly shedding a few months ago to  1 teaspoon 1 month ago and to about 1/8 teaspoon today. 19.5 months TSW. This is very encouraging, but I won’t put my teaspoons away just yet. 🙂

Measureable shedding started 2 months TSW 12/7/13

Measurable full-body shedding started 1.5 to 2 months TSW 12/7/13  (This is just what was on the sheet in the morning.) 

 

More skin!

More skin January 2014!

 

7/29/14--Chicken Champs!

7/29/14–Summer break from shedding

After no shedding months 8-12,  RETURN of the dreaded measurable shedding at 14 months TSW! 12/2/14

Steadily increasing in quantity to ….

Almost 1 teaspoon at 15 months TSW   1/10/15

Almost 1 teaspoon overnight shedding at 15 months TSW 1/10/15

1/2 teaspoon overnite shedding 18 months TSW 4/15/15

1/2 teaspoon overnite shedding 18 months TSW 4/15/15   (Spoon sizes: 1 tsp, 1/2 tsp)

1/8 teaspoon shedding overnight at 19.5 months TSW

1/8 teaspoon shedding overnight at 19.5 months TSW (Spoon sizes: 1 tsp, 1/2 tsp, 1/4 tsp)

 

And those FEET…well, they continue to be a real ITCH! Dr. Rapaport says itching means healing….

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19 months TSW    5/17/15     Erythema decreased slightly. Multiple excoriations due to scratching.    

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5/17/2015

5/17/2015

Must be a whole lot of healing going on!  Thank you, God, for fingers to scratch the itch.

“Blessed is the man who trusts in the LORD, whose confidence is in him.” Jeremiah 17:7

Champs again!

Despite the return of an itchfest in bilateral feet and a very itchy weekend for Brian, he and his teammates won their third tournament of the season. It was a repeat of their win last year. (Brian is kneeling, 2nd from right)

Virginia Breeze Elite 2015 Border Wars 11U Champions

Virginia Breeze Elite 2015 Border Wars 11u Champions     Rocky Mount, NC

Don’t let the itch keep you down! God is good–all the time. 🙂

TSW Symptoms and Treatment: 18.5 month update

***Please note: more frequent or daily updates and documentation can be found in LOG.

On October 6, 2013, almost nine years after off/on, as-needed use of topical steroids (TS) for eczema, we stopped using TS on Brian because the medications were no longer working to control  his eczema: his skin condition was deteriorating, and the quality of sleep, function, and life were adversely affected.  Thus began our wild ride into topical steroid withdrawal (TSW) (aka Red Skin Syndrome).

A year and a half later, we’re still on the TSW roller coaster, but the twists, turns, drops, and jerks aren’t as nauseating and unbearable as they used to be. In other words, it’s more like being in a ride line at Hogwarts castle in Universal Studios. You know you’re moving forward, but there are many stops and starts, double backs and zigzags, high places out in the sunshine and fresh air where you can see the end, then back down and around the bend into long, dark corridors where you can’t see in front of you, and there’s barely a glimmer of light. Nonetheless, you keep moving forward anxiously (and sometimes not so patiently) because you know that there is an end. We are all too ready for that end.

It cannot go without saying that the underlying eczema may now be reemerging as the TSW symptoms are working their way out of his system. So how do we know TSW is not already done and that it’s not just the underlying eczema returning? Because the symptoms are still not “typical eczema”. They are full-body manifestations (of signs and symptoms not seen in his eczema), not just localized patches of dry, itchy, nonblanchable redness.

Summer 2014, Brian’s TSW months 8-10, was great:  normal skin, 7-9 straight hours of sleep at night, zero obvious shedding, and soft, itch-free skin that required little to no moisturizer. But all good things must come to an end, and he’s been in flare since October 2014. It began as just slightly more noticeable scratching and gradually progressed to involve the return of: sleep disruption due to increased night-time scratching and waking; occasional night sweats/ooze; visible and measurable full-body shedding; abraded and excoriated areas on skin due to increased night and daytime scratching; dryness and rapid skin cycling; and a redness that can vary from just multiple red areas here and there to a more generalized pinkness, “red skin,” most noticeable at night.

Despite the return of the Scratchy Monster(c), life is a piece of chocolate cake (though very dry and crumbly, with no milk to wash it down) when compared to this time last year as well as 18 months ago.

Here is an update of Brian’s current signs/symptoms and treatments. We continue to diligently monitor his skin for infection.

*GENETIC MUTATIONS in BHMT, CBS, COMT, MAO, MTHFR, and GIF
which are being addressed by naturopathic doctor (ND) with vitamin and supplement support:  1/2 tab Vitamin B complex plant-based, magnesium, zinc,  glutathione, N-acetyl cysteine (NAC), histane,  vit D3, and lycopodium   (continuing)

*TRADITIONAL CHINESE MEDICINE (TCM): 1 month trial with 1st 2 weeks seeming to improve night sleeping and increase energy but increased daytime scratching. We changed one ingredient in the formula for the second 2 weeks but saw no significant decrease in daytime scratching. We had some compliance and logistic issues, too, that may have affected the effectiveness of the TCM, so we discontinued it. I feel TCM would be beneficial if consistently followed and may try it again in the future. Just too many variables in the pot right now. (discontinued for now)

1. IMPAIRED SLEEP: He is able able to fall asleep between 10 and 11pm with 1/5- 2/5 ss. He’s not consistently sleeping soundly greater than 3 hours straight due to scratching,  up at least 2x with 3+/5 ss, but he is able to get to school by 8:05 am.

RX: Night time reading, acupressure, deep breathing, parent physical assists with scratching so he can try to sleep,  ice packs

2. ITCHING:  Whole body, with primary areas being upper back between the scapulae and over their musculotendinous attachments to the spine; elbows; dorsum of hands and feet; achilles and ankles; thighs; and scalp along the hairline. 0/5 to 3-/5 during day. No major itchfests, but more constant moving of hands like “comfort scratching” per ND. Stress exacerbates the scratching intensity. Overall, scratching is greatly decreased from the 4/5-5/5 scratching and screaming itchfests from the early months of TSW.

RX: ice packs; coconut oil, lemongrass balm, bag balm; acupressure; deep breathing/delay scratching; parent occasionally physically assists with scratching; Microsilk tub bath; oatmeal bath; homeopathic itch preparation. He often declines benadryl and zyrtec when offered. 

3. BURNING/STINGING: after months of absence, skin burns or stings only occasionally with sweating or when entering shower, possibly due to microcuts in skin from increased scratching–who knows…

RX: deep breathing; massage of affected part; When stinging is a result of heat and sweat: towel off, apply ice pack, change to dry shirt, deep breathing, positive imagery

4. FOCUS/CONCENTRATION: Greatly improved. Full-time 6th grader; missed no days and got straight A’s in an honors curriculum for the first 3 nine weeks while participating in sports and other extracurriculars.

RX: deep breathing, acupressure, UNDA/coconut oil/lemongrass balm for when the scratching is 3/5 and becoming disruptive

5. MENTAL/EMOTIONAL—Much improved. Confidence better. Occasionally will get emotional late at night after a long day, but it’s difficult to distinguish between TSW-related or just “6th grader-itis”

RX: lots of hugs; reassurance; positive music, language, laughter; tough love; participate in activities with friends and teammates as much as possible; daily devotions and prayer

6. PHYSICAL FITNESS: 110% improved; currently playing travel and recreational baseball several times/week; able to run sub-8 minute mile

RX: get outside to play baseball, play with friends, run, jump, bike as much as possible; MOVE! STRETCH! BREATHE! BE THANKFUL!

OTHER:

a) SKIN TEXTURE: Variable. Pebble-grained texture of dorsum of hands and feet and fine sandpaper texture of arms and legs. Skin texture of entire back cycles  between soft and smooth as a baby’s butt to pebble grain texture to fine/medium sand paper, with or without redness. Dry skin, peeling/flaking especially elbows, anterior knees, heel cords. “Elephant skin” noted at the elbows and knees and “plasticky” feel

RX: Bag Balm to heel cords and any very dry, cracked spots on feet/hands; coconut oil on face/neck and arms and other body parts; lemongrass balm 

b) SHEDDING— Full-body shedding continues with the amount varying, depending on the cycle his skin is in, but not to the large quantities seen in the first few months of TSW. A good day is less than 1 teaspoon (down from a couple of tablespoons) of dead skin on bed sheet by morning. Unmeasured shedding continues throughout day as evidenced by the flakes left on the car seats, chairs, etc.

RX: Shaking out sheets, bedding, clothes  daily; moisturize or not with coconut oil, lemongrass balm, and/or bag balm

1/2 teaspoon shedding overnight 4/15/15

1/2 teaspoon shedding overnight 4/15/15

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c) EDEMA/OOZING: Several incidences of night sweats that soaked the sheets, had ooze smell but the consistency of sweat

RX: extra sheets to sleep on to absorb ooze and odor; keep skin clean; shower

d) BREAKS IN SKIN due to increased scratching: anterior and posterior shoulders, bilateral arms/forearms and hands/wrists; less on knees and popliteal fossae; and those pesky feet and ankles again!

RX: Microsilk tub bath in PM, shower in AM, file nails nightly to the nubs, wash hands, keep cuts clean; moisturize with coconut oil and/or lemongrass balm; ACV baths at least 2x/week and mupirocin topical antibiotic ointment to prevent infection

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Return of the “red sleeves”

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Left foot:  white sole; red dorsum

These small pictures to the right and left were taken after moisturizing.

The following 4 pictures are the feet before moisturizing. There is a clear demarcation between erythematous dorsum and white plantar surface. The lighting in the pictures makes it less obvious. IMG_1479 IMG_1480 IMG_1481

Feet/ankles at 18.5 months

You may think the feet above don’t look so bad, but compare them to pictures taken at 12 months and 15 months TSW below. (October 2014 and January 2015) One step forward, 5 steps back….

HAPPY FEET!   no itching here despite 1 year anniversary flare on other body parts!  Thank you, Jesus, for small favors!

HAPPY FEET! no itching here despite 1 year anniversary flare on other body parts! Thank you, Jesus, for small favors!     (October 2014–12 months TSW)

January 13, 2015--15 months TSW

January 13, 2015–15 months TSW

e) BLANCHABLE ERYTHEMA:  It’s baaack!  Redness of the skin (dilation of the blood vessels) that turns white (blanching) when you press on it, and turns red again when you take pressure off. Light red or pink this time, primarily on the back side of body–head to heels. Happens mostly toward the evening. According to Dr. Rappaport, TSW is a vascular (blood vessel issue), and eczema doesn’t blanch.

No RX needed. TSW skin is just fascinating….

f) TEMPERATURE DYSREGULATION: This was gone for months, but now  Brian’s complaining of being chilled or cold more lately.

RX: Put on a jacket!

We will get to the end of this crazy ride. Healing is happening; keep the faith; keep moving forward!

Faith is being sure of what we hope for and certain of what we do not see.” Hebrews 11:1

Easter, Baseball, and TSW

It’s been a nice Easter break from school. Little break from the pesky itch, but at least energy and function are good.

This year, we were able to go out of town with friends, go to Busch Gardens without cold packs, and Brian was able to get up today by 6am to make it to an 8am game–and play in it. No fuss, no muss.

This time last year, at the same tournament, the attempt at 6 am wake up was a disaster, and he made it to the later game, really wanting to play. However, the mind was willing but the flesh was weak and painful and itchy (3/5 to 4/5 scratch scale)  From Log:

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.

What a difference a year makes! Today, we were at the ballfields from 7:30 am to about 5:30 pm, and his team, VA Breeze Elite, won 3/3 games. Brian was able to play in all three with just 0/5 to 1+/5 scratching and no ice packs, except for his finger which he banged up diving back to 2nd base. His batting and defense are coming back, too. It was a great day with his friends.

What a difference 18 months off topical steroids make!

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Brian playing 2nd base 4/11/15–18 months TSW

 

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Batter up!

 

 “This is the day the LORD has made. Let us rejoice and be glad in it!”

Psalm 118:24