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
Beyond the Itch
I hadn’t intended to stay away so long, but a lot has happened since my last post in January. Between baseball tournaments, school, and traveling, 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, “Preventable: protecting our largest organ.” And, believe it or not, ALL this never would have happened had it not been for TSW.
Brian started TSW 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
Beyond the Itch