Publication and Happy 48-month TSW Anniversary!

On October 6, 2013, Brian stopped using topical steroids for his eczema because they were no longer controlling his flares, and his skin and physical condition were getting worse. After surviving the horrific early years and weathering the subsequent storms and calms on this protracted journey, he celebrates his 4th year being free of topical steroids. And what a great way to celebrate: The JDNA has published a Systematic Review on TSW in Children.

Much thanks to the parents who wrote blogs to share their children’s stories with others, and a huge thank you to Dr. Sharon Jacob of the Dermatitis Academy who believed this information should be available to the public in order to help prevent Topical Steroid Addiction (TSA) and Withdrawal (TSW) in infants and children. CLICK to view article. The JDNA (Journal of the Dermatology Nurses’ Association) has made it available FREE for 30 days. Thank you, JDNA!

Please share this pdf and/or link with pediatricians, dermatologists, friends, family, pharmacists, and others to help prevent TSA/Red Skin Syndrome and TSW.

Whether it be TSW, scleroderma, or other condition, documenting one’s journey via pictures, video, and/or journaling can provide a detailed record and data that cannot be captured in randomized controlled trials or 10-minute clinic visits. You can help others going through experiences similar to yours but also provide valuable qualitative information to researchers and clinicians who are looking for answers, willing to learn, and daring to think outside the (topical steroid) box.

“You made me glad by your deeds O LORD; I sing for joy at the works of your hands.” Psalm 92:4

28 Months TSW

Twenty-eight months after stopping topical steroids (TS), how can you tell the difference between topical steroid withdrawal (TSW) and “just eczema”? We in the TSW community ask this all the time, as do some dermatologists and other doctors who can’t believe that TSW could last so long. I agree: How in the world could TSW possibly last this long!?!?

That’s why we’re asking dermatologists and researchers to study TSW in children and adults who are going through this lengthy withdrawal-healing process. They could gather lots of valuable information from the TSW support pages, pictures, and blogs and interview the affected adults and caregivers of children who are going through TSW. From this they could create a picture of this iatrogenic condition and formulate hypotheses on which to conduct more formal research.

I’m not complaining, mind you, or saying, “Woe is me (Brian),” because Brian pretty much has his life back, and skin care and itch management is part of our routine. I just want answers.

My questions to doctors and researchers who believe TSW is just eczema are these:

  1. Does eczema cause full-body, visible, measurable flaking and shedding of skin? TSW does. The pictures below show just the skin that shed overnight.
  2. Does eczema cause full-body erythema/flushing at one moment then return to normal-colored skin the next, then back to flushing again? It still happens now–28 months after stopping TS.
  3. Does eczema result in plasticky “elephant skin”? It happened early in TSW and it’s happening now, more than 2 years after stopping TS.

    4. Does eczema result in “red sleeves” in  arms/wrists and/or feet/ankles? TSW does.

    5. Does eczema result in heat radiating from the body at night like and TSW-ooze-smell sweating? Still going on most nights.

    So, if these signs and symptoms are not TSW and not eczema, what is causing this continued manifestation of signs/symptoms that were present in the early months after stopping TS? Is it just the long-lasting adverse effect of TS use?

    AND if doctors and eczema researchers have seen eczema that presents like signs/symptoms 1-5 above in their patients, are those patients using topical steroids? If so, then how can one definitively say that these signs/symptoms in the patients were NOT caused by TS?

    Food for thought and questions to ask your healthcare provider next time. . . .

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Life after eczema herpeticum. . .Getting through the challenges of Winter weather… Spring is right around the corner…Current regimen/treatment follows the pictures below…Don’t let TSW keep you down!  Look Beyond the Itch!

“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

2/1/16

2/1/16  Morning

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1/30/16

1/30/16  Night time

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1/30/16 night time

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1/30/16

Goals: To keep the skin clean, hydrated, and infection-free; itch/scratch management

Treatment: Twice a day shower/bath followed immediately by application of either coconut oil, sunflower oil, or lemongrass balm/Zinc balm combo or a combination, depending on the condition of the skin. Wet wrapping (WW) both ankles and tops of feet at night with filtered water and dry sterile dressing; WW wrist and hands as needed if they are excessively dry or have open areas.

Vitamins: B complex, 4000 iu D3, Zinc, 2 Nordic Naturals fish oil capsules

Itch/Scratching: varies between 0/5 to 2+/5 scratch scale (see Log), stress scratching; benadryl PRN, ice packs, moisturizers (sunflower oil, coconut oil, aquaphor, and/or The Home Apothecary’s lemongrass balm), itch-B-gone spray; deep breathing and relaxation techniques, CBT, acupressure points

Function: Excellent! All A’s in honors classes, playing basketball, practicing and conditioning for baseball, x-box, RC cars, able to get up and ride bus to school with friends.

Look Beyond the Itch!

 

New “TSW Research Group” site

I started a separate blog/website called “TSW Research Group” to house independent research on topical steroid withdrawal (TSW) in children.

https://tswresearchgroup.wordpress.com/

So far, there are 2 items worth showing your pediatricians and dermatologists to at least get them thinking that topical steroids (TS) do have more adverse effects than the TS manufacturers would have them believe.

I’ve added Brian’s case study on the TSW Research Group site to go along with the systematic review of TSW in children. Still waiting for Dove Press’ decision on the review. Prayers appreciated.

Happy reading!

Plugging along at 20 months TSW

A few minutes ago, Brian called me from a friend’s house asking if he could stay for a sleepover. I said, “How do you feel?” He said, “I feel great!” I said, “OK, what do you need?”

Ahhh. Finally! a short, sweet conversation without TSW being the focal point of decision making. A few weeks ago, that would have been a “Not yet” because he was still snowing like a blizzard (shedding skin) and scratching hard enough to disrupt sleep. We’d discuss the shedding, sheet changing, clothing, skin care, bathing, scratch management, moisturizers, etc. My understanding but disappointed son would walk away praying for better days.

Maybe they’re here. Since school ended 2 weeks ago, his feet have been improving and the scratching has overall decreased. We’re hoping he’ll have a nice “skin and itch break” like he did last summer.

6/16/15

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more feet pics

May 17, 2015

May 17, 2015

June 17, 2015

June 16, 2015  compared to–>

Brian missed most of 5th grade due to TSW. This year, he completed 6th grade with perfect attendance and all A’s for the year. Itch or no itch, he’s going to have an A+ summer as well!

Don’t let TSW keep you down!

6/12/15 last day of 6th grade

6/12/15 last day of 6th grade

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

A systematic review of topical steroid withdrawal in children

Two great things happened this weekend.

1) Brian and his Virginia Breeze Elite teammates brought home another championship! They played 2 games on Saturday and 4 on Sunday to repeat as the Triple Crown Virginia State Champions (11u this year). Great weather, great company 🙂

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2) After 3+ months of work and neglecting my hubby and son, I finally completed and submitted my manuscript on “A systematic review of topical steroid withdrawal in children diagnosed with eczema” to an online journal. At 10,471 words, 5 figures, 19 tables, and 53 pages double-spaced, I was a “tad bit” over the 7500 word count, but the publisher was kind enough to make an exception to take a look at it.

Thankfully, this journal also allows the author to post the paper on a website while they decide on rejecting or accepting it. You can see the PDF here .

Whether it is “officially” published or not, at least I can get the information out there where patients, doctors, and researchers can access it, and now I can enjoy the rest of my summer watching my husband pace as we watch Brian and the Breeze boys play some INCREDIBLE baseball! 🙂

“Fire will test the quality of each man’s work. If what he has built survives, he will receive his reward..”  1 Corinthians 3:13-14

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