Save Someone’s Skin! Share this TSW Documentary!

          The horrific topical steroid withdrawal (TSW) Brian went through is not taught in medical, pharmacy, or nursing schools, and many clinicians are unaware of TSW or how to treat it. This documentary by a fellow TSW warrior, Briana Banos, sheds some light on the subject. Thank you, Briana!

Whether adult or infant, accurate diagnosis of the skin condition, close monitoring, and appropriate adjustments to treatment are essential to prevent adverse reactions and long-term consequences of topical steroids used for eczema.

          Be an Informed Consumer, and please share this with friends, family, doctors, nurses, pharmacists (students and practicing clinicians), etc. and help save someone’s skin.

TSW Progress Pictures of Infants and Children:

          TSW is a “24/7, 365 days/yr times n years” ordeal involving itching, burning, redness, oozing, pain, measurable shedding skin, hair loss, insomnia, temperature dysregulation, and more–as the body/skin tries to heal. See 3 sets of TSW progression pictures of kids and adults compiled by fellow TSW mama Stephanie Home Apothecary .
Encourage one another and build each other up, just as in fact you are doing.”                         1 Thessalonians 5:11

Happy 1/2 Birthday and 5 years TSW!

Brian got his learner’s permit this weekend–a great way to celebrate his 1/2 birthday and 5 years (61 months) free of topical steroids.

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November 1, 2018 (61 months TSW) Look who’s driving now! 

We started this Topical Steroid Withdrawal (TSW) journey on October 6, 2013 when Brian was ten. See pictures from the early months here. Being an inpatient rehabilitation physical therapist with a wound care background, I started this blog in February 2014 to document the clinician-caregiver and patient perspective of TSW in kids: the signs and symptoms, interventions/treatments, and day-to-day challenges of TSW not reported in research or seen in the clinic. It was my hope that the descriptions of the the horrific, yet fascinating withdrawal process and real-time, real-world picture progressions would help medical professionals recognize and prevent this little-acknowledged adverse effect of topical steroids in kids diagnosed with eczema. It was also a way to commiserate with and encourage other parents with kids going through TSW.

In the midst of the sleepless nights, constant wound care, and 24/7 pain, itching, oozing, and shedding skin, you can feel overwhelmed, helpless, hopeless, and alone. But don’t give up hope; keep the faith. Healing does happen, though not as quickly as we’d like. Getting off a medication that doesn’t work should NOT be this traumatic! How did we survive? By connecting with other TSW warriors and through lots of prayer and gratitude.

Try to find something to be thankful for in every painful movement, in every itchy hour, and in every sleepless night. When in despair, it’s hard to be grateful. But we must. Heck, when I was shaking sheets every day for four years, I gave thanks that I at least had sheets to shake!

If you’re angry, bitter, resentful, or still mourning lost years due to TSW, do something constructive with this negative energy so that your child’s suffering will not be in vain. How? Help prevent TSW in infants and children by raising awareness.

*Tell your story to friends, family, physicians, congressmen, mom’s groups, news outlets, and social media.

*Write to the American Academy of Dermatology, National Eczema Association, American Academy of Pediatrics.

*Share your story with medical, nursing, and pharmacy students to help educate these future clinicians on this long-lasting adverse effect of topical steroids.

*Volunteer with and/or donate to ITSAN (International Topical Steroid Addiction Network).

*At the very least, please report your experience with topical steroids to the FDA via MedWatch. Consumers need to report when drugs are ineffective or have side effects. Otherwise, continued safety and efficacy are assumed. If you need help with the report, contact me, and I’ll be happy to walk you through it.

TSW can make you or break you, but we can choose how we respond to past (and current) pain and losses–even the lengthy, horrific Hell-on-Earth journey that is TSW.  It’s been a long, hard process, and I’m very proud of my son for choosing to be better rather than bitter. By the grace of God, he’s stronger and more resilient for having gone through it. And so am I.

“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

 

In the beginning…November 2013–Seven weeks TSW

and it continued…2016…

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January 6, 2016 (27 months TSW) – 10:15 pm-Wet wrapping the hands and wrists with water before bed to try to keep skin hydrated. Note blanchable erythema in fingers.

 

Nowadays…2018…You’ve come a long way, baby!

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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

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