Monday, October 19, 2015

Two Weeks TSW

In my last post I shared how I discovered that my son (age 4) is addicted to hydrocortisone cream. If you missed it, click here. He's been through about two weeks of TSW (topical steroid withdrawal). People go through it for weeks, months, or even years, and there's no way to know how long or how severe his healing journey will be. All that's guaranteed is that his skin will get worse than it ever has before, and unfortunately we are already to that point. 

What started as a somewhat regular eczema flare in appearance got worse.  

A lot worse. 

The night of the photo shown above, his legs were dripping blood and he couldn't stop itching. He told me it itched so bad it hurt. Then he looked down and realized that his fingers were covered in blood, which horrified him all the more. He's never had an itch this intense or painful before and he was pretty miserable. As of that evening we began bandage wrapping him 24-7. 

I liberally applied home-made healing butter, covered it with nonstick pads (paper taped on), then rolled gauze (clear taped on). I'm also having him only wear pants, so it's harder for him to dig underneath the gauze. The following morning he showed noticable improvement so we kept at it...

As expected in TSW, he started breaking out elsewhere on his body too. He has the beginnings of rashes inside his elbows, and on his lower back (places he's never had eczema before). Aside from the intense, burning itch, this is another sign that what he's going through is TSW and not just eczema. Since he kept scratching at his elbows, and scratching only makes the skin worse, I went ahead and started wrapping them too. It looked like a little cast so I signed it for him. 

The eczema butter under bandage wraps seem to help. I did start using larger non-stick pads, wrapping his legs with the gauze a little snugger, and covering more of his legs with the gauze. I also started having him take Epsom salt baths, 20-30 minutes each in duration. All of these things seem to be helpful.  

I've also been connecting with others going through TSW, which is both scary (seeing how awful it is for them) and encouraging (their after pictures). We're looking forward to receiving our copy of Taming The Scratchy Monster, which was written for children who are suffering through TSW. 100% of the proceeds go to ITSAN.  I think it'll take several weeks to get here but I hope it will help him make sense of what he's going through. 

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