As a mom of a youngster with TSA/W, I have found a few things that have helped my son Kline (5 yrs old) go through TSA/W. Kline was on topical steroids for mild eczema for 2 years. After the steroids stopped working completely and he had a full body rash, we stopped the steroids. That was 28 months ago. Red Skin Syndrome is a very hard thing to deal with but I can tell you, it does get better. Slowly, yes! Eventually you can leave the house more, sleep gets more constant, and the new beautiful skin your child has is as soft as a baby’s bottom!
I hope these tips help you and your little one going through TSA/W as well:
1. Keep a stock of Costco popsicles in your freezer at all times!
Kline really loves popsicles, and they seem to not only taste good, but help sooth him when he is in an itchy flare. It’s as if they help cool him from the inside out.
2. Ice packs are our besties during TSA/W!
Kline is addicted to ice packs. They help sooth him when he is having an itchy flare and his skin is on fire. He often sleeps with one or two ice packs. He snuggles them like they are his teddy.
3. Apple cider vinegar is not just for cooking!
I make sure to put apple cider vinegar in Kline’s bath to ward off infections. It also seems to soothe his itch. We buy a gallon at a time at the grocery store.
4. Domeboro Solution and cold wash cloths help with the oozing.
When Kline oozes, he often likes a wash cloth with cold water on the oozing spots. Sometimes the Domeboro Solution helps soothe him, too. I put the solution in the fridge so it’s nice and cool to the touch. Domeboro Solution
5. Eczema clothing company’s pj’s!!
These have been a life saver! A must-have for Kline to not rip his skin apart while he sleeps. We have bought them probably every 6 months because they get so worn and he is growing so fast. Eczema Clothing
They really do help Kline sleep better and are super soft.
6. Home Apothecary Lemongrass Shea Butter Balm.
Kline’s skin had not been able to tolerate anything throughout his 28 months of TSA/W but, finally, we found the lemongrass balm made by the Home Apothecary on Etsy: The Home Apothecary
He loves it on his skin and it really surprises me. I never thought he would ever ask for me to put something on him. I don’t endorse products unless I absolutely love them, and this one I do love. More importantly, so does Kline. I also appreciate that it’s all natural with no ingredients that are not totally skin-safe.
7. Mummy time! ( unfortunately, not time for Mommy!)
We wrap Kline’s bad spots with his lemongrass balm underneath. This really seems to help the bad areas heal better and protects his skin from himself! If he has a lot of soreness, I will put Bactroban on his boo-boo’s too – just to help them heal a little faster and prevent infection.
8. Take some time for yourself! Finally some Mommy time!
As caregivers, we get so sucked into helping our TSA/W child that we find it very hard to leave them to do anything but take care of them. But leaving and taking a break is very important, even if it’s to take a nap or go for a walk. The healthier we are as caregivers, the stronger we can be for them. So, ask for help and ask for breaks……TSA/W is a very long, hard road, and you need to think of it as a marathon, not a sprint! Make sure you have the energy to make it to the end of the race, too.
9. Use the support groups that Itsan offers!
Unfortunately, time is really the only thing that heals the TSA/W kids from the damage topical steroids have done. It is very hard to see them suffer. Turn to the support groups Itsan offers. I have created amazing relationships with other parents whose children are also suffering from TSA/W because of ITSAN. Kline and I have 2 families now – our blood relatives and our ITSAN family. I would have been lost with our support group family.
10. Screen time is your best friend!
I know they say kids shouldn’t have much screen time, but I can not tell you how much Kline’s iPad has saved our lives in the last 2.5 years. It distracts him so he is not all consumed with the itch and burn of Red Skin Syndrome. The iPad was in bed with him on all of those sleepless, itchy nights, when I could not keep my eyes open another second to scratch him. Now, if they just make an iPad that rubs and scratches the Topical Steroid Withdrawal kids, that would be worth every penny!
If you would like to follow Kline’s journey through this hell we call Topical Steroid Addiction & Withdrawal, please check out his blog here: Kline’s Blog
Remember to take each minute at a time and breath, and remember: one day you will be free from the itchy monster!
Xoxox Loren and Kline