Ten Years Free of Topical Steroids

All praise, honor, and glory to God!

“I will praise You, O LORD, with my whole heart; I will tell of all your marvelous works.”   Psalm 9:1

Last year, I had originally intended to stop posting about my son’s TSW journey, as it seemed that nine years was long enough and that it was time to move on. However, I would be remiss not to share God’s grace and provision in Brian’s life in the past 24 months.

Some time after signing a letter of intent in Fall 2021 to pitch for VCU, Brian tore his right elbow UCL (throwing a 100mph in a run-and-gun drill). He underwent Tommy John surgery (UCL reconstruction) in March 2022, missing his senior year of high school baseball. Return to pitching after this surgery was said to be 14-18 months.

Brian’s recovery and return to pitching was complicated by: poor incision closure because of dry eczema skin; allergic reaction to steri-strips; skin infection along the incision line; and strep throat–all before the start of college. Then, the baseball coaching staff changed; Brian developed pain when ramping up throwing; he developed Covid; and, to top off 2022, his skin had a major flare-up that rivaled his earliest days of TSW. The pain, itching, scratching, oozing, crusting, shedding, redness, and misery were back!!! A great start to freshman year, huh?

In the midst of all this, however, God was working and “making all things work together for good” (Romans 8:28). Brian’s UCL tore due to too high a load too soon, not due to overuse. The down time, physical therapy, and strength/conditioning training enabled his body and tissues to grow and get stronger. The swelling and wet, weepy skin from the steri-strip allergy forced the wound edges together and provided the moisture needed to facilitate incision healing. The doctor prescribed penicillin for his strep throat, which treated the strep but also cleared up the skin infection along the incision site. When he finished his10-day antibiotics regimen, the strep and infection were gone, and his incision was fully healed!

When Brian’s skin flared like TSW of old, his doctor prescribed Dupixent. This physician fought with the insurance company for two months to get it approved. On December 23, 2022, the doctor called and said, “Christmas miracle: Dupixent was approved!” Praise the LORD!!! Brian took the first loading dose on December 30, 2022, and by January 3, 2023 his pain and itch were decreased by 50%. By January 12, his skin was clear and pain-free, and the itch was negligible. He was able to enjoy comfortable skin for the first time in many months. So far, his twice a month injections have been helping, and we pray it continues to be effective.

On March 2, 2023, twelve months after his Tommy John surgery, Brian’s orthopedist cleared him to pitch. His first collegiate start was not fun, but he was able to pitch 29 innings during his freshman season and enjoyed a good sophomore Fall. Only God could have orchestrated the healing, baseball outings, and results (see photos).

My prayer has always been that God be glorified in Brian’s actions and performance on and off the ball field. The greatest gift of these past two years is that Brian has recently been attending a good Bible-believing-and-teaching church with some teammates and growing in the grace and knowledge of our LORD and Savior Jesus Christ. There is strength in the waiting and purpose in the pain; abiding in Jesus is never in vain.

Wishing you and your family a happy, healthy 2024!

Trust in the LORD with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge Him, and He shall direct thy paths. Proverbs 3:5-6

Closure and Our Blessed Hope

October is National Physical Therapy Month as well as Eczema Awareness Month. It’s also the month in which—9 years ago—my son stopped using topical steroids for eczema because they no longer worked and began the horrific process toward healing called TSW (Topical Steroid Withdrawal). Little did I know how helpful my physical therapy and wound care background would be in taking care of him and his skin. There’s nothing like a clean, freshly-wrapped (bandaged) elbow, knee, ankle (add a body part) to brighten one’s day!

Another bright spot in this dark journey was making friends with other moms of “TSW kiddos” through a relatively young ITSAN forum. Praying for one another, sharing non-pharmaceutical treatment ideas and research, commiserating during flareups, and celebrating good skin days and that elusive sound sleep helped remind me that we were not alone.

However, we were never alone. God was with us every step of the way, and when we could not walk nor crawl further, He carried us. God has answered prayers for health and healing; some prayers He has yet to answer, but I have faith He will, even if it’s not on this side of heaven.

I feel it’s time to close out this blog at 9 years TSW. My son’s battle with frank TSW is, for the most part, over (though only time and good science/research will reveal if TSW is ever truly over), and he has emerged victorious in that he holds no bitterness, no self-pity. He does continue to manage the underlying eczema, which—since he’s an adult now and does his own thing—he will deal with in his own way and in his own time.

If your child is just starting TSW, check out ITSAN (International Topical Steroid Addiction/Awareness Network), a primary source for sound TSW information. Also, connect with other parents who know what you’re going through. Most importantly, pray for wisdom and discernment as you face the challenges and hard choices that lay ahead. TSW is a long, painful, itchy ordeal, and it’s so easy to lose hope. DON’T lose hope. There is healing, and there is life during and after TSW.

TRUST God. BELIEVE in our LORD Jesus Christ who suffered and died on the cross for our sins and resurrected on the third day, according to the scriptures. Jesus’ blood paid our sin debt so we can have eternal life with Him, and there will be no more pain, no more tears, no more eczema, no more TSW….

Hallelujah!!!

“For God so loved the world that He gave His one and only Son, that whoever believes in Him shall not perish but have eternal life. For God did not send His Son into the world to condemn the world, but to save the world through Him.” John 3:16-17 (NIV)

“For the grace of God that brings salvation has appeared to all men, teaching us that, denying ungodliness and worldly lusts, we should live soberly, righteously, and godly in the present age, looking for the blessed hope and glorious appearing of our great God and Savior Jesus Christ, who gave Himself for us” Titus 2:11-14 (NKJV)

8-year Update: Don’t Let TSW Prevent You From Achieving Your Goals

Don’t let TSW stop you from pursuing your dreams! Brian is 8 years TSW, and he officially signed his National Letter of Intent (NLI) to play college baseball for VCU as a pitcher.

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Brian started TSW as a baseball-loving 10-yr-old on October 6, 2013. Despite long-lasting TSW effects and eczema issues over the years, his hard work, positive attitude, and perseverance (along with LOTS of prayer) enabled him to excel academically and athletically. We’re so proud of the young man he’s become and look forward to what the future holds. Go Rams!!!

Let go of bitterness; let go of anger; let God use your difficult circumstances to make a positive difference in your life and the life of others.

“Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the LORD your God is with you wherever you go.” Joshua 1:9 (ESV)

TSW Anniversary: Seven Years Free of Topical Steroids!

       On October 6, 2013, my 10-year-old son started TSW. Seven years later, it’s a blessing to see how far he’s come. Comparing pictures from now to then, one would never have imagined that this strapping young man was once the red-burning-itching-oozing-cracking-flaking-painful-skin little boy going through this preventable topical-steroid-induced turmoil and trauma.

First day of school August 31, 2020

       TSW was far from easy, but it was necessary and the right decision for us. If your child is going through TSW, may God bless, comfort, and heal your little one and give you and your family strength, endurance, and support for the journey.

“I can do all things through Christ who strengthens me.” Philippians 4:13

“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

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 .

https://isaiahquinn.blogspot.com/…/my-amazing-update

https://isaiahquinn.blogspot.com/…/hero-tsw-pals-post-2

https://isaiahquinn.blogspot.com/…/arrrr-tsw-mates-3-in…

“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.

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…

11/28/13 (7 weeks TSW)

Facial edema, oozing, thin skin

and it continued…2016…

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!

51 months TSW and a Belated Happy New Year!

During the horrific early months and years of TSW, the nights were so dark,  long, and lonely, and the days–though welcomed because of the light–were just as draining and frustrating, with no end in sight. Now here we are, four years later, and I’m amazed how fast the time has flown by!  Brian started TSW as a 10 year-old fifth grader, and he’s now a 14-year-old 9th grader.

Sept.2013 Before TSW

Sept. 2017 51mo TSW

          September 2013 ^^^just before TSW  September 2017^^^51 months TSW

How’s he doing? Well, the cold, dry winter atmosphere has resulted in the usual dry skin; the added experience of being a freshman has contributed to increased stress scratching; and cat dander still results in itching, red patches, and allergy symptoms (benadryl to the rescue!). However, the last few TSW signs/symptoms I’ve been monitoring–red sleeves, oozing, elephant skin, profuse skin shedding–have not recurred this time. Now, of course he gets the skin flakes from the dry skin, but it doesn’t result in tablespoons of skin on the sheets in the morning. In fact, my arms are getting flabby because I’m no longer changing and shaking out sheets every day. I’ll exchange flab for TSW any day!

PLEASE REMEMBER: Each person, every BODY is different, in the responses and reactions to medications and in the body’s ability to heal. The original skin condition for which you or your child started topical steroids may re-emerge as the TSW process proceeds and comes to a close. Some kids and adults are fortunate enough to go through TSW and have good-looking skin and perhaps no more eczema at the end. However, this is not everybody. SO, don’t feel like a failure or that “it’s not working for you” just because your skin is not blemish-free and baby-soft at the end of your journey. TSW is a process where the body heals from the accumulated adverse effects of topical steroids, and it can take months to years; It is NOT a cure for eczema or the original skin condition. We have seen in the forums that some people are still having flares or recurrence of TSW symptoms even after 5 years of stopping TS. Why? I don’t know. It needs to be researched, and this is why it’s so important for you to tell your story to doctors, the FDA, the media, etc.

I posted Brian’s most recent progress photos in Pictures. Certainly, the skin is NOT perfect, nor will it probably ever be because dysfunctional skin is in his genes, thanks to me and my hubby. He also probably still has atopic dermatitis–which he chooses to manage without steroids and by not worrying about it. However, he is healthy and active and living life. What more can we ask for our child? 🙂

If you are just starting on this TSW journey, you are not alone. It’s a long, painful, difficult rollercoaster process, but for the health and welfare of your child and/or yourself, withdrawing ineffective topical steroids is essential for the body to heal. In addition, appropriate skin/wound care, nutritional, medical, and psychosocial support are needed to address the signs, symptoms, and sequelae of TSW. Find a knowledgeable or at least open-minded doctor who can support you during this process and communicate with others who understand what you’re going through.

You do have hope for healing!

“I can do all things through Christ who strengthens me.” Philippians 4:13

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!

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)

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 months, 10 months and 18.5 months TSW