New “TSW Research Group” site

I started a separate blog/website called “TSW Research Group” to house independent research on topical steroid withdrawal (TSW) in children.

https://tswresearchgroup.wordpress.com/

So far, there are 2 items worth showing your pediatricians and dermatologists to at least get them thinking that topical steroids (TS) do have more adverse effects than the TS manufacturers would have them believe.

I’ve added Brian’s case study on the TSW Research Group site to go along with the systematic review of TSW in children. Still waiting for Dove Press’ decision on the review. Prayers appreciated.

Happy reading!

Plugging along at 20 months TSW

A few minutes ago, Brian called me from a friend’s house asking if he could stay for a sleepover. I said, “How do you feel?” He said, “I feel great!” I said, “OK, what do you need?”

Ahhh. Finally! a short, sweet conversation without TSW being the focal point of decision making. A few weeks ago, that would have been a “Not yet” because he was still snowing like a blizzard (shedding skin) and scratching hard enough to disrupt sleep. We’d discuss the shedding, sheet changing, clothing, skin care, bathing, scratch management, moisturizers, etc. My understanding but disappointed son would walk away praying for better days.

Maybe they’re here. Since school ended 2 weeks ago, his feet have been improving and the scratching has overall decreased. We’re hoping he’ll have a nice “skin and itch break” like he did last summer.

6/16/15

IMG_1565

more feet pics

May 17, 2015

May 17, 2015

June 17, 2015

June 16, 2015  compared to–>

Brian missed most of 5th grade due to TSW. This year, he completed 6th grade with perfect attendance and all A’s for the year. Itch or no itch, he’s going to have an A+ summer as well!

Don’t let TSW keep you down!

6/12/15 last day of 6th grade

6/12/15 last day of 6th grade

“Blessed is the man who perseveres under trial, because he has stood the test, he will receive the crown of life that God has promised to those who love him.” James 1:12

A systematic review of topical steroid withdrawal in children

Two great things happened this weekend.

1) Brian and his Virginia Breeze Elite teammates brought home another championship! They played 2 games on Saturday and 4 on Sunday to repeat as the Triple Crown Virginia State Champions (11u this year). Great weather, great company 🙂

IMG_1558

 

2) After 3+ months of work and neglecting my hubby and son, I finally completed and submitted my manuscript on “A systematic review of topical steroid withdrawal in children diagnosed with eczema” to an online journal. At 10,471 words, 5 figures, 19 tables, and 53 pages double-spaced, I was a “tad bit” over the 7500 word count, but the publisher was kind enough to make an exception to take a look at it.

Thankfully, this journal also allows the author to post the paper on a website while they decide on rejecting or accepting it. You can see the PDF here .

Whether it is “officially” published or not, at least I can get the information out there where patients, doctors, and researchers can access it, and now I can enjoy the rest of my summer watching my husband pace as we watch Brian and the Breeze boys play some INCREDIBLE baseball! 🙂

“Fire will test the quality of each man’s work. If what he has built survives, he will receive his reward..”  1 Corinthians 3:13-14

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