What our TSW routine looks like right now and how we got here
Our sweet Liam
Our current Topical Steroid Withdrawal symptoms & Why we began to think there was more than eczema at play
About a year ago we were on a short drive to drop something off and noticed that Liam’s itching was far worse than normal. His whole face was peeling, he was uncontrollably itchy and nothing would soothe it. It’s then that we realized we had stopped the steroid and he had been off of it for a while. To ease his discomfort we were given another steroid after describing his symptoms to his allergist, and it helped for a bit, until like every round- we would start to run out and the symptoms would begin to get worse. It had not clicked with me yet that it was steroid withdrawal that we were dealing with. We had done so many things to help heal his gut and eczema at this point we were so confused as to why nothing was even coming close to helping.
Another particularly bad day of itching about 6 months later I noticed an entirely different rash on his whole body. It was bright red, hot to the touch, uncontrollably itchy, and again he had the skin flaking off his face and body. I decided to experiment and put the steroid on. Boom. The next day that rash was gone and just his small patches of regular eczema on his feet and hands remained. It was then that I realized something else was going on.
I was confirmed in my thinking when our pediatrician told me his symptoms looked like topical steroid withdrawal, and that is the first time I had ever heard it from a health professional. And so begins our journey of TSW, once we acknowledged it and understood it for what it was, it opened up a new understanding and way of dealing with his symptoms.
Our current routine to help ease his symptoms:
What we have discovered and what many other parents going through this same thing have also found - is that what works one week may not work the next. As the body tries to rebound from being suppressed for so many years, different things work to support it at different times. There are times were baths are really soothing, and other times were the water feels like acid on his skin. There were times were moisturizer was helpful, and times like now where it burns his skin. Here’s what we do as well as some tips and tricks to help care for him that we learned the hard way on:
No preventative moisturizer. If he is really itchy and complains we spray active skin repair on open wounds and then top with zinc cream or castor oil. Sometimes he will tell me which one he wants and it never fails to be the one that doesn’t burn his skin. His skin is so so dry and flaky which we believe to be a beginning stage of healing in TSW.
No baths. This is a hard one. For awhile we were successfully doing apple cider vinegar baths which helps keep staph at bay on the skin (a problem that littles with eczema and TSW often have) but one day that didn’t work anymore. Because he cant tolerate baths right now we have to be extra cautious in treating his wounds so that they don’t become infected.
Washing the laundry is something I didnt expect to be as big of a change as it is! During TSW they can shed so. much. skin. To keep the sheets clean as well as his pajamas we wash them every day. We wash and dry on hot to kill any bacteria and dust. We also wash his bath towel after every use to wash bacteria away as well.
Another thing we learned the hard way is to monitor their nails every day or few days. Because he itches so intensely and for long periods of time and his skin sheds so easily, the skin embeds into the finger nail. This builds up very very quickly and if they have staph living on their skin the nails can quickly become infected. We managed the infections by soaking his nails every night in a mixture of epsom salt and apple cider vinegar and cleaned out each nail with a tool. It was and is time consuming but we want to avoid an infection!
We stopped telling him not to itch. From what I have heard from others who have gone through TSW it is pure torture to feel so insanely itchy and have someone tell you to stop. We encourage him to rub or find a softer way to itch, we rub his skin for him, and we put socks on his hands to prevent breaking skin or if his hands bother him.
Ice packs help to cool the burn right now for him. We will rest it on whatever area is super itchy or has open wounds and it helps calm the burning sensation.
We try to keep our cool and keep him relaxed because the more relaxed he can be we find the flare doesnt last as long. (much easier said than done!). This also sometimes means he gets to wear his pajamas outside because right now, changing and exposing his skin to air is very aggravating and often times results in a flare.
Distract. Distract. Distract. The best medicine for this awful sickness. Yes that often times means his favorite show, but it can also be games, a snack, snuggling, getting outside or playing. With two other kids sometimes the tv truly is my saving grace but we are brainstorming ideas because we dont want to have it on a lot!
These are some of the topical things we do to help him, there are also supplements we are doing to help support him and the discomforts that come with this and I will write about that in another blog post. :)
I will link some helpful resources on TSW and what it is below:
Topical Steroid Withrawl Syndrome Group