There were several comments on my post about DIY Scratch Sleeves that theorized why my son’s eczema was so bad. I appreciated these comments, but by the time I had gotten them I already knew what they were telling me was true. And I didn’t mean to take a super long blogging break the first half of this year but I had to because my son was so sick. So sick. And he isn’t out of the woods yet, but he’s well on his way to healing from a condition called TSW or Topical Steroid Withdrawal.
Sounds weird, right?
You see, I thought withdrawal from medications was a fairly quick thing… a few weeks, max. In fact, we experienced a minor withdrawal when we switched from topical steroids to essential oils about a year ago. It looked like a minor flare, followed by a ton of improvement. But then on Halloween last year my family went to IHOP and my son was given a strawberry that had spent its life in strawberry syrup being coated in Red 40. We didn’t realize it until after he had eaten it, and as a result we spent several days in the hospital helping his body breathe. One of the steps in that process was a round of oral prednisone.
At his follow-up appointment with his pediatrician, the doctor pointed out that his skin looked great, but was looking very thin. After a couple of weeks, his skin began looking worse than ever, and at that point nothing helped.
In our Christmas photos, you can see that he just isn’t quite himself… and it just got worse from there. We didn’t leave the house for weeks. I hadn’t gone back to the topical steroids, but the prednisone set off the withdrawal that I suppose the switch to oils had *almost* saved us from.
If you’ve ever had the inkling that maybe your eczema or your child’s eczema was getting worse on steroids… or that your skin almost seemed to need the steroids… let me just tell you you’re probably right.
After 9 months of suffering, my boy can play again. We almost never get questions about his skin anymore. I’ve watched friends go through this condition, though, and I know it might not be over for us. But for now we’re okay. And because of what we’ve been through I have to tell people and at least try to prevent another child from going through this misery. Because it’s downright horrifying what my son has had to endure and I can’t imagine not trying to prevent that!
If you want to know more, go to ITSAN.org. You’ll find forums there with people who have and are going through this. You’ll find research and photos of healing. You’ll find a list of symptoms that go beyond skin and maybe it will explain some of the things you’ve experienced that have baffled the doctors. I know I was thankful to find them and talk to other parents who have walked in my shoes, get advice, and help me figure out how to love my son through the hardest thing I hope he ever has to go through.
I have many more photos, but they are heartbreaking and very personal. There are other moms who have shared their TSW stories in far greater detail, and you can find them at http://www.itsan.org/get-involved/IMIA/