I have been wanting to document this journey we have taken for the past two years through our oldest son's skin issues and so I am sitting down now and writing this out.
I sincerely believe that skin issues begin in the gut. In fact, I believe many health issues are due to an unhealthy gut. As Americans, we treat the insides of our bodies terribly, and unless we have major problems that prevent us from living a fairly normal life, we usually continue to abuse our bodies from the inside-out. I am no exception to this rule and still struggle with maintaining a truly healthy diet and exercise. I was born with eczema, a skin condition that, I have been told by our family practice doctor, is basically a name for any skin condition which is not diagnosable by any other name. I struggled with eczema throughout all of my childhood and through random periods of my adult life as well. I remember having eczema on the insides of my elbows that would burn and crack open and bleed when I would open my arms. I remember a period of time when I had eczema underneath my eyes and every time I would sweat (which I did a lot), I would break out in eczema in the areas behind my knees, on my neck and sometimes even on my back. The solution was always the same - hydrocortisone cream and, if really bad, prescription-strength topical steroids.
When Matthew, my oldest, was born, he had perfect baby skin. I had hoped that none of my children would inherit my itchy skin and was happy to see he was okay. Around six months, he started breaking out a tiny bit on his face and the rash would not go away. We took him to see our family doctor and he recommended we remove wheat, dairy and corn from his diet. He told us that it was unnecessary to remove it from mine, even though he was a full-time breastfeeding baby at the time, since 98% of the wheat, dairy and corn from my diet would not go to the breastmilk.
His face didn't get much worse than this, but it would not go away until we removed the food groups.
Once we removed the foods, his eczema went away within days and we didn't see it again until the next winter when we decided to let him eat wheat, dairy and corn again. We decided to remove only wheat at this point because he was older and loved his yogurt and cheese and once again, it cleared it up for the most part.
Another year passed and we tried wheat off and on again. This time, when he was almost 4 years old, the eczema was stubborn and started showing up in other places, beginning with his arms. We bought some hydrocortisone cream, thinking his eczema was mild enough so that this would help. No one warned us that this would lead to needing even more topical steroids because no one knew or had heard of topical steroid addiction (TSA). As is typical, Matthew's skin cleared up with the hydrocortisone while it was being used. Once it cleared up, usually within 48 hours, we would stop applying it and, sure enough, by the next day, it would rear its ugly head. At this point, we began removing wheat and dairy, but it didn't seem to make a difference. We figured that it was no longer related to his diet, but that he had it full-blown, as I had as a child. Looking back (hindsight is always 20/20, isn't it?), I realize that he was already addicted and that is why his skin wasn't clearing up with the removal of certain foods from his diet.
From there, because Matthew's skin wasn't clearing up and was actually getting worse, we began prescription-strength topical steroids. The same thing happened that happened with the hydrocortisone cream. It would clear up within 48 hours and then we would halt the application. By the next day, his skin would rebound and his eczema would come back worse. At this point, it also started spreading - mostly on his shoulders and on his legs. We went through this constant cycle of rash, cream/ointment, clear, stop, rash even worse....repeat, repeat, repeat. We took him to see our family doctor who tends to lean on the side of natural remedies first. He suggested we put Matthew on a probiotic and eliminate the food triggers we knew had helped in the past. He prescribed a topical steroid to use only if absolutely needed. We used it. What baffled our doctor and his daughter who specialized in skin diseases was that outside of the patches of eczema, Matthew's skin was flawless. It was soft, smooth and without blemish.
I had started digging for other answers, perhaps he had even more sensitivities to food than just the wheat and dairy. The idea of eliminating foods one by one seemed daunting, especially because I was working full-time and Scott was going to school and working several part-time jobs. We just didn't have the time and I lacked the organization. I happened upon a diet called GAPS. Maybe a friend suggested it. I can't remember - the whole period of time was kind of a blur for me. GAPS stands for Gut and Psychology Syndrome and is a diet that has helped people with autism, mental illnesses and autoimmune diseases including eczema. I quickly bought the book, since I read that you had to really read the book from cover to cover in order to be able to fully follow the diet. As I read, I was more convinced this would help heal Matthew's skin. Since I tend to fall on the more crunchy side of life, I really wanted to try this and eliminate the topical steroids with it. I felt we wouldn't be able to really know if eliminating all the common allergens was helping if I was constantly applying the topical steroids to get rid of the eczema.
Right after the new year in 2013, we began the GAPS protocol, starting with the Intro diet. It was not easy to cut out all refined sugars, grains and processed foods cold-turkey, but we did it. Our bodies went through a bit of die-off from doing this so quickly and we weren't feeling too great the first couple of days. But then, our guts started healing and I started losing weight right away. Cooking from scratch every day and not having the filler grains wasn't easy, but we pushed through. I was able to tolerate dairy for the first time since my teenage years and I noticed the kids were eating everything and were less picky. Matthew's eczema, however, kept getting worse. By this point, they were turning into huge sores all over his body and he was constantly itching. A month into eating GAPS, his eczema continued to get steadily worse. I was at a complete and total loss, thinking maybe it had to get worse before it got better, but not completely convinced since I had heard so many testimonies of results within a week.
A mom on a GAPS Facebook group heard my frustration on the board and mentioned that Matthew may possibly be going through TSW - topical steroid withdrawal. She introduced me to itsan.org and as I read through the list of symptoms for TSW/TSA/Red Skin Sydrome (RSS), it was as if I light flickered on in my head. I finally knew what was going on with Matthew's skin. I finally had an answer. I talked with this mom a little more and joined a group for people going through TSW. As I saw the pictures of all these people, they looked so much like Matthew. It was heartbreaking to see all these kids and adults going through this painful process. I read everything I could on TSW and followed the group's posts to take in all the information I could.
Topical Steroid Addiction occurs when one uses steroids on the skin. A person's skin becomes "addicted" to the steroids and cannot heal itself without it. It can occur from a day of use to years and years of use. The only cure for TSA is time and treating the symptoms along the way to make life a tiny bit easier. Typical TSA takes about 2 years to heal and the longer the use, usually the longer the process.
As Matthew went through the first few months, this is what his skin looked like on a good day. His arms were the worst (where we applied the bulk of the topical steroids) and during the worst period of time during his TSW, they would ooze and burn and he would scream and cry. We could apply nothing to these areas to soothe, as every single thing made the burning worse. The only thing that even remotely touched it was cold washcloths. So, we applied those when he couldn't handle the pain. He was constantly itching and oozing for the first 6-9 months. His clothes stuck to his spots because they oozed on a constant basis. He was picking at the dead skin. We rarely gave him baths because being in the water made these areas burn as well. He wore his pajamas inside out so there would be no seems irritating his skin.
Because the itching was so bad, he didn't get very solid sleep at night and he's our deepest sleeper out of all our children. I let him sleep in as often as I could because he was so tired. He was constantly cold, so we made sure to bring jackets, layers and he liked to be under a blanket often. Once the ooze started settling down a little, the itchiness continued and he started flaking. We found piles of skin flakes wherever he was. The itching couldn't be tamed and certainly couldn't be helped, so we worked on vacuuming often and used our mini broom quite often. At this point, I let him eat whatever he wanted. He was going through so much pain, I felt I couldn't make him suffer unnecessarily. From everything I read, it didn't matter anyway. Because this wasn't true eczema, but TSW, it wouldn't make a difference until this healed and he had true eczema surfacing. Some days, it was terrible to watch him suffer and some days, I was just so relieved that we had an answer and knew we just had to trudge through this.
Time did start to heal. I really noticed a difference around 10 months. The oozing had mostly stopped and we started seeing patches of skin where there used to be huge sores. The skin that developed was beautiful, almost as if there had never been a sore there. When we hit the one year mark, I felt we could breath a small sigh of relief. I could see the end in sight and was hoping that by summer, his skin would be completely healed so he could swim. We did have a couple flares, where the skin would get worse for awhile, in this time, but not nearly as bad as its worst. We continued to move ahead and his skin continued to improve. Around a year, he was able to take baths and actually started enjoying them again! I don't know when it happened exactly, but at some point the itchy part of this whole process tapered off and now he only scratches periodically throughout the day. I'd say he's somewhere between 85-90% healed. And the true eczema has surfaced and we know that gluten is the primary suspect. I plan to put the whole family on a paleo/GAPS diet in the future to heal our guts, so he doesn't have to suffer with eczema any more because I do believe it starts in the gut. But for now, I'm happy we no longer have to live this nightmare. Matthew's suffering was small compared to many other people who go through TSW. Knowing what we know now, we will never depend on topical steroids again and I don't believe we will ever have to.
These are the most recent pictures I have of Matthew's skin. These were taken about 3 months ago and he's healed even more since this time!
The last of his TSW - this is pretty much healed now, but the first thing to flare when he eats gluten.
