It's been over a year since I posted our eczema success story. It's horrifying to me every time I point someone new to this blog post to try to help their kiddos, and I see these old pictures and am reminded of how challenging life was for them at that time.
I've had a few people ask me how things are going now, and someone even emailed me on Etsy yesterday after finding our last post and not being able to find a recent update (I guess I need a better contact button on my blog, eh?). So here's our update!
In the last year, I've learned several things. First, and most importantly, I've learned that topical steroids are much worse than I had ever suspected. When I caved and used hydrocortisone on Landon just a month after I wrote that blog post because the winter weather did bring a tiny flare for him, I unknowingly created a dependence for his little body, and he had to go through withdrawal to allow his body to heal. And topical steroid withdrawal was worse than even our original eczema. It was a nightmare unlike anything I could ever find words to describe. To see your child in that sort of pain and misery and be completely unable to offer relief is just terrible.
I've now been a part of a support group on Facebook for steroid addiction and withdrawal for nearly a year and have met so many people whose struggles have been even worse than ours, and it breaks my heart each time someone new joins the group, gives up the topical steroids and begins to flare horribly. I know what's in store for them for months or years and it breaks my heart that I can't save everyone from topical steroids. All I can do at this point is strongly discourage everyone I know from EVER using topical steroids, even once. Luckily, I have friends and family who have done a round or two and been totally fine. And I breathe such a sigh of relief each time! I know that the shorter the time on the steroid and the less potent it is, the less likely the person is to become addicted. But because it happened to our little man from sporadic OTC hydrocortisone for less than two months, we ARE the rare case and it makes me so nervous when I hear of anyone in my life taking that risk.
I also learned more about oral allergy syndrome and histamine intolerance, two things that I believe strongly every eczema/allergy/asthma parent should be well versed in. It may not be a puzzle piece for every child with one of these conditions, but I think it impacts more than we know, by a long shot. I've been able to relieve my kids' skin even more by limiting these foods. Adalyn's skin has remained awesome in the last year. She had a spring flare, which was caused by seasonal allergies and out of our control, but it was mild comparatively and didn't bother her much. We've been able to successfully introduce some foods back into their diet, like sweet potatoes and oatmeal and rice, but many others continue to flare their eczema each time I reintroduce, like wheat/gluten, tomatoes, citrus and more. And Landon has so many severe food allergies that cause anaphylaxis. His food list is very limited and it seems that every time I try a new food, he breaks out in hives, vomits, swells up and gets wheezy. It's been a really scary year with him.
And interestingly, as a side note, I put Ben on the same diet as the younger kids last year, mostly just to make life easier. But within a week, it became extremely clear that he needed the diet as much as they did. Though he only had his eczema for six months, he had been plagued by these terrible headaches for a year or two. Once every week or two, he would start to cry and grab his head and tell us how much it hurt. He'd end up on the couch or in bed in so much pain, and often it would be so severe he would throw up. It never, ever occurred to me that it could be from food. It should have, especially given how much I've always cared about food. But I thought we ate pretty well. From the time we started GAPS, he never had another headache/vomit spell. NEVER. As time went on, I started allowing Ben to have more things that the others couldn't, but nothing terrible. We're talking a piece of sprouted wheat bread. But one day, we went to Trader Joe's, just he and I, and I let him have a tiny cup of juice and the two gluten-free Joe-Joe's a store employee offered him. Literally three or four minutes later, he started complaining that his head hurt. I couldn't believe it. I rushed us through the store and got us home as quickly as I could and shortly after getting home, he threw up.
I still haven't been able to pinpoint exactly what it is that bothers him so much, but I have to believe it's related to sugar in some way. Or maybe food dyes. I really don't know. But he's taught me even more about the importance of food for children than the others have. The others had this very clear medical issue, but Ben's issues were different, and I didn't suspect food, and his behavior improved so much after the diet started. On the flip side, his behavior has declined so much since school started (at home, at least) and he's had so many more health challenges that we did have to make the decision to send him separate snacks recently (since Kindergarten started, we let him have the same daily snacks as everyone else, but so often the snacks are super sugar laden like cupcakes and Oreos and Hi-C and other stuff that his body obviously should not have).
As for a skin update, I'd say about three months ago, things started improving a lot for Landon. The red blotchy skin got better, we no longer had to keep him in scratch sleeves during the day and he actually started sleeping well! He now just wakes up, on average, once a night. And I'd say maybe three nights a week now he's actually sleeping through the night! That is MONUMENTAL compared to our life six months ago! The elephant skin is gone. All signs of topical steroid withdrawal are now over, and in total, I'd say he went through it for six months. That's pretty short compared to most, but he was only ever on hydrocortisone sporadically for a few months, so the fact that he even went through withdrawal from that sort of use is awful.
His eczema is pretty much only on his legs now, with a little bit on his arms. We decided, after getting so tired of keeping him in cotton sleepers day in and day out for months on end and not ever seeing our little guy in real clothes (just felt like a constant reminder that "you're different") to just put cotton tights on his legs underneath his clothes. So now he gets to wear regular clothes and if he does scratch his legs (which he does so much less now - mostly only when he's upset), he can't do any real damage. I believe that in the year since I posted our success story, this is what happened:
Winter came. Air dried out. Skin dried out. Tiny flare. I panicked, fearing his eczema could come back full-force and decided to try hydrocortisone. I unknowingly sent him into steroid addiction, and when I stopped using the cream, his skin got 20 times worse than it had been, quite suddenly. He became horribly allergic to so many foods. His behavior was absolutely out of control. He was miserable and in pain. His little body was so worn down. Six months of withdrawing and he finally came out of it, with his residual eczema now left behind. The residual eczema? It's not great. I would still classify his legs as severe compared to many people with eczema. But to us, it definitely feels more like mild. When you've lived with horrendous, you can totally deal with severe. It doesn't impact our life to nearly the degree it did from January to July. He doesn't need to have his hands covered. We lead a pretty normal life, except for the severe food allergies. He's a happy kid! It feels so, so good to be back to this place yet again.
I think at least until the kids have outgrown it, we'll have to deal with a flare in the winter and a flare in the spring. Their seasonal allergies are pretty intense, so I think it'll just be a thing we have to deal with. But as long as we keep their bucket as empty as we can by eliminating all the foods they react to, I'm sure their eczema will continue to be much milder than it used to be, even when it is winter and spring. And I have TONS of faith that by the time they're teenagers, at worst, they'll be mostly eczema-free, or totally eczema-free, as long as we never touch a steroid cream again.
REAL CLOTHES! NOT A SLEEPER WITH ECZEMA SLEEVES OVER IT! WOOT!
LOOK AT THAT BEAUTIFUL SKIN!