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

TSW and baseball, continued….

After 2 days, 7 games, and 43 innings, Brian and his teammates, Virginia Breeze Elite, are the 2015 Triple Crown Capital City Invitational 11U Champions!

April 11-12, 2015 11U Capital City Invitational Champions

April 11-12, 2015 11U Capital City Invitational Champions

Virginia Breeze Elite 11U  Brian is kneeling, 2nd from the left.

Virginia Breeze Elite 11U     (Brian is kneeling, 2nd from the left.)

Don’t let TSW get you down! Keep your eye on the prize at the end of the journey. 🙂

“Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.”  James 1:12

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

“Shedding and Oozing and Sweating–Oh My!”

For those of you just starting this topical steroid withdrawal (TSW) ordeal, here is some great advice/tips that I came across during those dark days of October/November 2013 when Brian just started TSW.

https://mylittleredwarrior.wordpress.com/2013/09/02/shedding-and-oozing-and-sweating-oh-my/

Also some good news. TSW warrior Nina A. was able to see dermatologist Dr. Lio for an appointment, and she said he was amazing and dedicated to helping all his patients, that includes the 10 TSW patients he is currently seeing. She, like Dr. Lio, is going to participate in the Itch for a Cure Eczema walk in Chicago.  Yay, Nina!

So, if you have no supportive doctors near you or if you are anywhere near Chicago (that means within 200 miles or whatever you’re willing to drive), Dr. Lio at the Chicago Integrative Eczema Center understands TSW and may help support you through it. He has no miracle cures but may provide alternative treatments to help you as your body/skin heals. It will also be a boost for the mind and soul knowing that someone who can make a difference in the medical community believes in TSW. 

We TSWers need to support him and his efforts as he pushes for recognition of TSW (aka Red Skin Syndrome) in the medical community.

Have a GREAT Weekend!

“With God we will gain the victory, and he will trample down our enemies.”  Psalm 60:12