39 months TSW and Happy New Year!

Darth Brian ready to take on the big hill! 1st snow 1/2/2017

1/8/17               Darth Brian ready to take on the big hill!   (wearing sunglasses and breathe-easy ski mask)       1st snow of 2017 

Let it snow, let it snow, let it snow!

The start of 2017 finds us in a much better place than this time last year, when Brian was recovering from eczema herpeticum and a TSW flare (see post), and in a much, much better place since he started TSW at the age of 10.

January 6, 2017 marked the 1189th day–3 years and 3 months–since we stopped using topical steroids on Brian for eczema because they had ceased to keep the eczema under control. (Read About it). Despite the long, exceedingly difficult journey and cruel rollercoaster nature of Topical Steroid Withdrawal (TSW), it was the right choice for Brian’s skin and health.

Today, he’s a healthy, thriving 8th grader, and his skin is stronger and in better condition than it was when he was using topical steroids. NOT perfect, but better. After changing and shaking sheets daily for over 2 1/2 years, I enjoyed a 3-month break from this ritual (Aug.-Nov. 2016) when shedding was imperceptible, almost normal. Eczema scratching comes and goes but is no longer debilitating (Log 1/8/17 update). He can sleep at night and wake up for school in the morning with minimal scratching. No more hollering for an ice pack in the middle of the night, though he does ask me to scratch his back for old time’s sake. With the late Fall and Winter weather, I’ve noticed increased dryness and some mild flaking that didn’t start until mid-December. Elephant skin, ooze, and red sleeves have not reared their ugly heads, but there are a few cold months left, and these signs of residual TSW may yet resurface and disrupt our lives once again.

Of course, nothing–especially skin–is perfect, and acceptance of whatever state we’re in brings a sense of peace, but we praise God that our lives no longer revolve 100% around his skin. Right now, we are comfortably managing eczema and are thankful for how far Brian’s come. TSW has shown us we can handle and get through whatever comes our way. And so can you. We are never alone. Stay strong; have hope; keep the faith!

“When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through fire, you will not be burned; the flames will not set you ablaze. For I am the LORD, your God, the Holy One of Israel, your Savior.”  Isaiah 43:2-3

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SKIN/SCRATCH MANAGEMENT at 39 months TSW (links to management for 5, 10, and 18.5 months TSW also follow)

8th grade Cross Country 10/26/2016

Warmer days……8th grade Cross Country 10/26/2016

Brian’s current Skin/Scratch regimen is similar to that posted 9/16/2016, with changes reflecting whatever his skin requires at the particular time. Goals remain the same, but interventions may change as weather and skin needs change. The following regimen works for Brian. However, people in various stages of TSW may require different treatments, and it is important to test or know what you may or may not react to. Every person is different; you need to find what works best for you.

Goals:

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

Treatment/Skin Care Routine: At least once daily shower, followed by application of organic coconut oil (face, extremities, trunk). Hot summer months require a “lighter” moisturizer or no moisturizer at all. During winter, can use thicker aquaphor or petroleum jelly for nose, cheeks, ears, and parts exposed to cold.

Sunscreen: Organic, virgin coconut oil

Infection control measures:

  • Take apple cider vinegar (ACV) bath (10 minute soak) or 20 minutes in microsilk tub bath 1-3 times per week, followed by shower/rinse off, and moisturize with coconut oil or nothing. More frequently if flaring.
  • Spray sovereign silver, as needed, on any open areas or broken skin.
  • If these conservative measures fail, and skin/itch don’t improve, consult health care provider.
  • Change sheets daily.

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. Some short episodes of   3-/5 with fatigue or stress or who knows what. (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 (e.g., coconut oil), or sovereign silver gel/spray

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

  • Shedding—As in past 2 years, progressive decrease in visible, measurable shedding from end of June to Aug. This year it was June to barely perceptible in Nov. 2016. Restarted slightly measurable shedding (<1/16 teaspoon) around mid-December, from increased skin dryness. (Is this still TSW or “just” eczema? I’m leaning toward eczema))
  • Elephant skin—Not evident since this time last year January 2016
  • Red sleeves, edema—None noted in upper or lower extremities since January/February 2016 (feet) 
  • Ooze smell—None since June 2016

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 hypo-pigmentation from scratching on tan skin. Dry but no obvious flaking. Sometimes erythema with neck scratching

–Still with periodic small breaks in skin on shoulders, elbows, hands, or knees from scratching/picking; skin fluctuates from soft and smooth to pebble grain

–Able to play in the sun, heat, and snow without itchfests

Function: Sleeping through the night (roughly 10:30p-7am) and staying an active 8th grader.

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Click these links to see Brian’s treatment/regimens at 5 months10 months and 18.5 months TSW

Happy 12th Birthday, Brian! 20 months free of topical steroids!

TSW Day 607. When the scratching seems non-stop or Brian’s skin is acting crappy or when it feels like Brian’s never going to get better, I look back at one of the early days like day 25 or 50 or one year ago today on the daily Log on this blog and compare it to what’s going on now. Then I see that what’s going on now is still much better than what happened in the past, and it reassures me that Brian continues to heal.

Reading old entries also makes me thankful for what he is now able to do. It reminds me to be thankful that he has been able to go to school without missing a day and is able to sleep in his own bed rather than on the family room floor (which we did for TSW months 2-9.) When I see all his art supplies, tools, gadgets and gizmos, baseball pants, and school papers all over the house and then catch a glimpse of his sneaker  sole as he runs out the door to play with friends, I have to catch myself: instead of getting mad that he didn’t pick up before running out, I try to thank God for returning to Brian the energy, enthusiasm, and health that made this mess possible.

If you (or your child) are dealing with the physical manifestations of TSW and are miserable, think back at your lowest functioning point. Are you better off now than then, if even just a little? Have you spent a bit more quality time with family or learned to appreciate the simple things in life, like watching your child with TSW sleeping peacefully, even if it’s just for 10 minutes? The low times in our lives are not for nothing; there is value in simplicity, silence, and solitude.

Challenge yourself to find something each day to be thankful for, to focus on what you can do, and to focus on your blessings. It’s not easy, but as you continue to focus on the positives and always do the best you can with what you have, you’ll soon find yourself several months farther down this TSW road and that much closer to recovery.

This time last year was the start of Brian’s miraculous summer skin clearing. I hope it happens again. His poor little feet could use a break from scratching. He doesn’t seem to let it bother him, though. Beyond the itch, life is good.

“This is the day the LORD has made; we will rejoice and be glad in it!” Psalm 118:24

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

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

A Year Ago on This Date…

“I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”  Jeremiah 29:11

We stopped using topical steroids for Brian’s eczema on October 6, 2013, and he began the long, painful, itchy, miserable journey through topical steroid withdrawal (TSW.)

Fourteen+ months later, here is today’s entry from my Log:

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!

Good friends are forever, but TSW is not! 

Praise the LORD!

CLICK on picture to enlarge. Dates are on far left.

IMG_1319

 

Would you wish TSW on those who deny it exists?

Sometimes I do, especially when TSW symptoms return with a vengeance and cause so much itch, pain, and misery to a great kid like my son.

For the past 2 nights, Brian has awoken scratching furiously (4/5 Log scratch scale) and drenched in sweat. It certainly felt like sweat but smelled a little like the ooze of old. His back was red and mottled like a heat rash. Daytime scratching has increased also.

SLEEP: not sleeping through the night anymore, sleep scratching hard (3+/ to 4/5 Log scratch scale) several times between 12:00am and 5:00am; sound asleep by 6am (bus comes at 7:45am)

SKIN: open 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 help calm the scratching…temporarily

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, and disappointed at the return of all this. He’s 14 months free of topical steroids, and, especially in the evening, his skin looks like it never healed.

Breathe deeply;

be patient;

be grateful.

Tomorrow is another day…closer to healing.

I will still praise God and thank the good LORD because He continues to heal Brian, even though our eyes beg to differ.

“I have set the LORD always before me. Because he is at my right hand, I will not be shaken. Therefore, my heart is glad and my tongue rejoices; my body also will rest secure.”    Psalm 16:8-9