I had a major AH-HA moment when I found ITSAN at http://www.itsan.org/. I instantly knew this was the answer to the question “Why the hell is my daughter’s skin getting worse instead of better?” I sent the link to my husband and he agreed that this was her. I then continued to search for anything on topical steroid addiction and topical steroid withdrawal. I was disappointed to find that there isn’t much out there about these. I did find http://klinestopicalsteroidhell.blogspot.com/ and http://redskinsyndrome.squarespace.com/ and knew we were headed in the right direction.
My husband and I decided to talk to our daughter and let her know what she was in for. She agreed that the steroids weren’t helping anyway. We showed her some pictures and tried to answer all her questions. We stopped all topical steroids within a day or two and I continued to dig for information.
Unfortunately the more I found out, the more I realized that my daughter was in for a horrible year or so. It scared the hell out of me. I listened to the teleconferences on the ITSAN website – at http://www.itsan.org/eczema_recorded_questions.html and I found them so helpful. I took notes and completely overloaded my little brain with information.
My daughter took everything in stride but things were about to get worse. If you are considering stopping topical steroids I highly recommend gathering information. We jumped right in without having a clue what we were getting into. Take a day and listen to all the teleconferences so you have some idea of what you are in for. Shop for some basic supplies – ice packs, motrin, antihistamines (if you plan on using them), natural oils (coconut, tea tree, jojoba – whatever you plan on trying), vaseline, gauze, etc. Don’t try too many emollients. Try one at a time and test them in small areas to make sure it doesn’t irritate your skin. If something burns or irritates your skin, put it away and try it again at a later date.
TSW sucks. It is a horrible, painful journey but the only journey that we are willing to take. I am so happy that we found ITSAN.org because we found hope when we spent years with none.