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

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

Happy 12th Birthday, Brian! 20 months free of topical steroids!

TSW Day 607. When the scratching seems non-stop or Brian’s skin is acting crappy or when it feels like Brian’s never going to get better, I look back at one of the early days like day 25 or 50 or one year ago today on the daily Log on this blog and compare it to what’s going on now. Then I see that what’s going on now is still much better than what happened in the past, and it reassures me that Brian continues to heal.

Reading old entries also makes me thankful for what he is now able to do. It reminds me to be thankful that he has been able to go to school without missing a day and is able to sleep in his own bed rather than on the family room floor (which we did for TSW months 2-9.) When I see all his art supplies, tools, gadgets and gizmos, baseball pants, and school papers all over the house and then catch a glimpse of his sneaker  sole as he runs out the door to play with friends, I have to catch myself: instead of getting mad that he didn’t pick up before running out, I try to thank God for returning to Brian the energy, enthusiasm, and health that made this mess possible.

If you (or your child) are dealing with the physical manifestations of TSW and are miserable, think back at your lowest functioning point. Are you better off now than then, if even just a little? Have you spent a bit more quality time with family or learned to appreciate the simple things in life, like watching your child with TSW sleeping peacefully, even if it’s just for 10 minutes? The low times in our lives are not for nothing; there is value in simplicity, silence, and solitude.

Challenge yourself to find something each day to be thankful for, to focus on what you can do, and to focus on your blessings. It’s not easy, but as you continue to focus on the positives and always do the best you can with what you have, you’ll soon find yourself several months farther down this TSW road and that much closer to recovery.

This time last year was the start of Brian’s miraculous summer skin clearing. I hope it happens again. His poor little feet could use a break from scratching. He doesn’t seem to let it bother him, though. Beyond the itch, life is good.

“This is the day the LORD has made; we will rejoice and be glad in it!” Psalm 118:24

To Stop or Not to Stop Topical Steroids for Eczema?

CAUTION: If you have been using topical steroids for eczema, STOPPING topical corticosteroids (TS) completely is NOT to be taken lightly. Find a supportive doctor. If addicted to TS, your body will go into Topical Steroid Withdrawal (TSW), and the doctor can help you treat or manage all the symptoms that come with it.

* TSW symptoms: whole-body redness, burning, stinging, pain, increased itching, red sleeves, swelling, oozing, flaking and shedding copious amounts of skin, hair loss (head and body,) insomnia, temperature dysregulation, fatigue, thoughts of suicide, possible HPA axis suppression and stunted growth in children, and others

* Symptoms often last 24 hours/day and 7 days/week for months to years, with the skin cycling constantly. The pain and itch can be unbearable.

*Function can be severely impaired. Many adults have to stop work or limit work hours. Students often miss school.

* TSW impacts the entire family.

* TSW is NOT easy; not everyone will be able to follow through to the end.

* Some people may go through TSW for several weeks, months, or years and have to return to using topical steroids because the suffering was too unbearable and quality of life deteriorated. There is no shame in this. THAT is just how difficult going though TSW is.

* Having a doctor or other healthcare practitioner who will work with you (whether they believe in TSA/TSW or not) is important so they can monitor your health and help you through any crisis you may experience with TSW, like skin infections and pain management.

*Do your research.

*Make an informed decision. Be prepared for everything that TSW involves. The choice to use TS is yours; the choice to stop TS is yours. Make the decision that is best for you and your health.

*Full recovery from TSW does not necessarily mean “cure” of the original skin condition (for example, eczema.) The underlying eczema may reemerge, but it is nothing compared to the hell on earth that is TSW.

*NOTE: One should never quit systemic or oral corticosteroids cold turkey. These medications must be tapered with a doctor’s assistance.  It is only the topical corticosteroids we are discussing here.

FOR PARENTS: research the medications; read the TS’s patient instruction pamphlets. There are few, if any, long-term studies on the use of topical steroids on young children, and many TS do not recommend they be used on children under the age of 2. You must weight the risk/benefit, follow the drug’s precaution instructions, follow your gut.

For us, taking Brian off TS was logical because the TS stopped working to manage his eczema, and he was only getting worse. Why continue using something that no longer works? Then we found ITSAN and other helpful blogs. Stopping TS was the right thing for Brian, and although he is still going through the later stages of TSW, his function, itch, and skin are far better now than when he was on TS.

I do not regret putting Brian and our family through the hell on earth that is TSW. I do wish I had been more diligent about trying various natural or alternative methods of eczema treatment before using TS.

To stop or not to stop topical steroids? Pray for guidance. You must do what is right for you and your situation, and be at peace with your decision.

Wishing you all the best…..

“Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.”  Proverbs 3:5-6

Would you wish TSW on those who deny it exists?

Sometimes I do, especially when TSW symptoms return with a vengeance and cause so much itch, pain, and misery to a great kid like my son.

For the past 2 nights, Brian has awoken scratching furiously (4/5 Log scratch scale) and drenched in sweat. It certainly felt like sweat but smelled a little like the ooze of old. His back was red and mottled like a heat rash. Daytime scratching has increased also.

SLEEP: not sleeping through the night anymore, sleep scratching hard (3+/ to 4/5 Log scratch scale) several times between 12:00am and 5:00am; sound asleep by 6am (bus comes at 7:45am)

SKIN: open scratches on shoulders/blades, back, lateral glutes; badly scratched-up elbows and knees; doing ACV baths nightly past 2 nights to prevent infection. lemongrass balm to knees/elbows help calm the scratching…temporarily

Dry and flaky; increased shedding

OTHER: appears to be some increased emotional lability this past week, some increased trouble staying focused, trouble thinking

I’m feeling sad, frustrated, and disappointed at the return of all this. He’s 14 months free of topical steroids, and, especially in the evening, his skin looks like it never healed.

Breathe deeply;

be patient;

be grateful.

Tomorrow is another day…closer to healing.

I will still praise God and thank the good LORD because He continues to heal Brian, even though our eyes beg to differ.

“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

Topical Steroid Withdrawal and Technology

Technology is a wonderful thing.

Wow! I can’t believe I said that! Remember, I’m the one who thought that anything electronic is an anti-social device and that games like candy crush are a waste of time. I’m the one who resisted technology so much that I’d still be using a typewriter and a dial-up telephone had it not been for my techno-gadget-guru husband, who patiently drug me along–kicking and screaming–into the 21st century. Yes, I have to admit, technology has been very instrumental in Brian’s 12.5 months through topical steroid withdrawal.

It was through the internet that I found Juliana’s blog and ITSAN. They gave a name to Brian’s worsening condition: topical steroid addiction, topical steroid withdrawal (TSW,) red skin syndrome. We stopped using topical steroids on him the very next day, and our nightmare to healing began.

The scientist in me demanded I observe and record details, and I was so appreciative of advice from other TSW blogs, that I started this blog. The iphone allowed me to take pictures to document Brian’s changing symptoms and conditions to go with the words, in an effort to help others on this same journey.

It was through the ipad and that abominable Candy Crush that Brian (with his dad) was able to find a few moments of relief from the itching.

The blu-ray player and many trilogies helped us through weeks of itchy insomnia.

In the 4th month of TSW, playing on the x-box kept Brian from scratching himself bloody. Eight months later, he is able to play x-box live with two other “TSW x-boxers” his age from Texas and England, each helping the other resist the itch and providing moral support for the days ahead.

Skype and email have allowed me to connect with the parents of Brian’s new x-box friends, and we share ideas, stories, heartache, and support.

I’m a little slow sometimes, so please excuse my enthusiasm over these things that you’ve probably already been using for years. I’m just so happy and grateful that these “anti-social” devices and technology can serve a humanitarian purpose in connecting and cheering up people who can, understandably, become depressed and isolated because of TSW. We’re on this rough road together, and technology is helping our boys’ adversity be a little more bearable.

See, an old dog CAN learn new tricks….but I still hate Candy Crush. 🙂

Brian and friends Minecraft adventures:

BRIAN, OLIVER, AND FAIZ won’t let TSW–or time zones–keep them from building with friends!

 

“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.”  2 CORINTHIANS 1 : 3 – 4