We are one month into topical steroid withdrawal (TSW).
If you missed it, you can read my original post here about how my four year old began this awful journey because of using over-the-counter hydrocortisone cream, as directed, for his eczema. Instead of helping his eczema, the steroid cream gave him a new condition that's much worse, called Red Skin Syndrome.
His Legs: Better and Worse
Some TSW sufferers stay in a constant "bad" state while others say that their flares cycle. I guess I'd say his legs are going through small cycles of looking a little better, then worse again. Here they are during week three:
Sunday (somewhat better because
it's drying out instead of oozing)
His Arms & Torso: Spreading Quickly
These last two weeks he's broken out on his entire torso and arms. It's even beginning to work its way up his neck. We knew this was a possibility and many TSW sufferers are covered head to toe, but we sure hoped he would be an exception to that considering his limited use. (He never had eczema or used steroid cream on any of these areas, they are just breaking out now in withdrawal.)
As of week three, he told me that his whole tummy hurt from it. Unlike his knees, this area has thankfully remained dry so far (no oozing, blood, or open skin). Up to this point, we've been holding out hope that the red skin won't spread to his face, but we see the beginnings of it. :( :( :(
If you missed it, you can read my original post here about how my four year old began this awful journey because of using over-the-counter hydrocortisone cream, as directed, for his eczema. Instead of helping his eczema, the steroid cream gave him a new condition that's much worse, called Red Skin Syndrome.
Weeks 3 & 4 TSW Update...
His Legs: Better and Worse
Some TSW sufferers stay in a constant "bad" state while others say that their flares cycle. I guess I'd say his legs are going through small cycles of looking a little better, then worse again. Here they are during week three:
Monday (looking very improved)
Wednesday (in-between)
Thursday (bad)
Friday (awful..)
There's no balm on his skin,
it's just that shiny on its own!
Saturday (slightly less than awful?)
Sunday (somewhat better because
it's drying out instead of oozing)
During week four it was much of the same, with a range of better and worse days, with more days being worse than better.
His Arms & Torso: Spreading Quickly
These last two weeks he's broken out on his entire torso and arms. It's even beginning to work its way up his neck. We knew this was a possibility and many TSW sufferers are covered head to toe, but we sure hoped he would be an exception to that considering his limited use. (He never had eczema or used steroid cream on any of these areas, they are just breaking out now in withdrawal.)
Week 3...
Week 4...
As of week three, he told me that his whole tummy hurt from it. Unlike his knees, this area has thankfully remained dry so far (no oozing, blood, or open skin). Up to this point, we've been holding out hope that the red skin won't spread to his face, but we see the beginnings of it. :( :( :(
Wrapping: A Learning Process
I've been on this consuming, frustrating mission of trying to find the best method of bandage wrapping our boy. It's been a combination of trial & error, helpful suggestions from my TSW Caregivers Facebook group, and searching online. I think we are making progress.
In effort to prevent him from shredding his leg bandages from itching at night...
we've tried TubiGrip and TubiFast in place of the tape and gauze. It still bunched at night due to his scratching, till I tried the suggestion of extending it all the way down his foot AND taping his pajamas around the thighs to prevent his hand from getting at the bandages underneath his pants. We also started having him wear adult tube socks on his arms (underneath long sleeves) for more of a scratching buffer day and night. He's being a good sport about it.
As the red skin spread and intensified on his torso and arms we began having to wrap those with Tubi Fast.
In effort to prevent him from shredding his leg bandages from itching at night...
we've tried TubiGrip and TubiFast in place of the tape and gauze. It still bunched at night due to his scratching, till I tried the suggestion of extending it all the way down his foot AND taping his pajamas around the thighs to prevent his hand from getting at the bandages underneath his pants. We also started having him wear adult tube socks on his arms (underneath long sleeves) for more of a scratching buffer day and night. He's being a good sport about it.
For his knees, we switched from using regular non-stick pads to Combine ABD pads, thanks to a suggestion from the FB group. This is an amazing upgrade from the non-stick pads since they kept sticking and they weren't big enough. We were taping three large non-stick pads together per leg (using 12 pads per day for his legs), and now one pad fits one leg (4 pads per day). It isn't perfectly non-stick on oozing days, but it's a whole lot better than the non-stick pads were.
Another TSW mom shared the website HPFY Stores, where these first aid supplies can be purchased at better prices in bulk. This is much appreciated since we are going through them like water. Here's our first order, with combine bandage pads & tubifast...
The Good News: Happy Mail
My son was so happy to receive two special packages in the mail! The first package was his book, Taming the Scratchy Monster, which was written especially for children suffering through TSW and he loves it. He's read it at least four times a day ever since it came.
The second package was some hand-made, 100% cotton gifts from his aunt. She made him a new hat, gloves and a scarf since his old ones were polyester and TSW skin is hyper-sensitive to irritants.
We are tired of this and ready to be better. He's most comfortable in the controlled environment of our home where he can stay all bandaged up, keep socks on his hands, and he doesn't have to be still. It's becoming more challenging to leave home since he's constantly uncomfortable, can't really focus, and in varying amounts of pain from the itching. Let's hope that his recovery time is quick, because we've pretty much decided that we need to become semi-hermits for the near future.
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