From 5th grade to 9th grade! Where has the time–and TSW–gone?

I hadn’t intended to stay away so long, but a lot has happened since my last post in January. Between baseball tournaments, school, traveling, and taking care of dad, I completed my transitional doctorate in physical therapy from Northeastern University in July and received my direct access certification for VA; my TSW systematic review paper and my capstone paper on scleroderma have been accepted for publication and will be available online soon; two other papers on scleroderma are being considered for publication; we met up with other TSW warriors in Denver; and the world-famous Briana Banos visited and interviewed us for her documentary on TSW, “Preventable: protecting our largest organ.” And, ironically, ALL this never would have happened had it not been for TSW.

Brian started TSW (topical steroid withdrawal) as a 5th grader in the  Fall of 2013. Today, he just completed his first month as a 9th grader! So far, he’s juggling a rigorous curriculum and baseball pretty well. Now, the lack of sleep is due to homework and projects, not the incessant itch of TSW. Although his skin is not perfect–no thanks to bad genes–three of the five persistent TSW symptoms I’d been monitoring (elephant skin, red sleeves, feet and ankle flares) did not rear their ugly heads this past spring and summer. Dare I say it and risk jinxing us? Could the TSW be over?

September 5, 2017       First day as a high schooler!

Nahhh…we still have to get through winter and spring. If there’s more snow on the ground than on his sheets and if his flares don’t reoccur, then I’d say we’re done. In the meantime, I’ll continue to gratefully and joyfully watch my sweet little boy grow into a strong young man, made wiser and more resilient by this unenviable journey.

 “You turned my wailing into dancing; you removed my sackcloth and clothed me with joy, that my heart may sing to you and not be silent. O LORD my God, I will give you thanks forever.” Psalm 30:11-12

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

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

 

New Teen, Baseball, and 31.5 months TSW

So proud of Brian as he finished his 7th grade year with perfect attendance and straight A’s for the 2nd year in a row (and an award for “Curiosity” hmmm). Not bad considering Topical Steroid Withdrawal (TSW) kept him out of most of 5th grade. Perhaps all that TSW down-time strengthened his immune system!  😉

In addition, he and his Breeze brothers have warmed up this baseball season with a couple of championships and a runner-up on their road to Cooperstown.

TSW can take a hike; 8th grade can wait–Summer fun, here we come!

June 15, 2016

So long, 7th grade!  June 15, 2016

Northeast Super NIT Champions 12u   Great win in 95+ degree heat and high humidity--take that, TSW!

Northeast Super NIT Champions 12u  
Great win in 95+ degree heat and high humidity–take that, TSW!

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2016 East Coast Swing Champions

You make me glad by your deeds, oh LORD; I sing for joy at the works of your hands.” Psalm 92:4

“Thinking Outside the Topical Steroid Box” in Boston

I’m working on my doctorate in physical therapy through Northeastern University in Boston, and, yesterday, I had the pleasure of participating in their RISE 2016 Expo. I did a poster presentation on Topical Steroid Withdrawal (TSW) in children, which summarized my 2015 research/paper “A Systematic Review of Topical Steroid Withdrawal in Children Diagnosed with Eczema.”  It was well-received and was one of the finalists for the research awards.

RISE was a great networking opportunity, and I was able to share information on TSW in children and adults, but BEST of all, I was able to meet Pam, Rob, and their son Ryan! Ryan is 30 months TSW and continues, like my son Brian and many others, on this rollercoaster healing journey.

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Pam, Ryan, Me

Make our kids’ TSW suffering count for something! Keep sharing your stories and spreading awareness about this potential adverse effect of topical steroids with your friends, family, acquaintances, doctors, and anyone who will listen. Help prevent future infants and children from having to go through the ordeal of TSW!

Continuously running slide show with healing picture progression of TSW infants and children

Continuously running slide show with healing picture progression of TSW infants and children (Collages were courtesy of Stephanie from The Home Apothecary.)

"Topical Steroid (TS) Spiral" leading to TSW

“Topical Steroid (TS) Spiral” leading to TSW in susceptible individuals

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TSW Research Group, LLC: Patient perspective in evidence-based practice is dedicated to research and education about TSW in infants and children

TSW Research Group, LLC and ITSAN brochures at RISE 2016 Expo

TSW Research Group, LLC and ITSAN brochures at RISE 2016 Expo

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Abstract # 1035 “Topical Steroid Withdrawal (TSW) in Children” is a finalist: Top 30 of 412 presenters and 1 of just 3 chosen from the Graduate Health Sciences category.

 

A special thank you to ITSAN for sharing their brochure on Red Skin Syndrome and to Pam from Creative Pear Marketing & Design, Stephanie from The Home Apothecary, Heather, Nicole, and the TSW Research Group, LLC think tank for their collective efforts in raising awareness of TSW and providing support and encouragement for those affected by TSW.

Poster references and poster & paper acknowledgements

Poster references and poster & paper acknowledgements

LORD, you establish peace for us; all that we have accomplished you have done for us.”

Isaiah 26:12

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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2/1/16

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2/1/16

2/1/16

1/30/16

1/30/16  Night time

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1/30/16

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1/30/16 night time

1/30/16

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!

 

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. 😉

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"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