Over a month ago, I wrote a little bit about Lucy's eczema and what it's been like dealing with that. I would love to say that this post is all about how much BETTER she is! It's not. Actually she's worse. Over the weekend she woke up with her eyes swelled shut. I don't think this was caused by the eczema. Or maybe it was (maybe she rubbed her eyes too much in her sleep??). I thought, maybe it's something with her allergies. The only thing I could think of at the time was we had eaten at a restaurant on Friday night and the girls had some chicken strips and fries. It's possible they cooked it in peanut oil as I forgot to ask. However, the swelling didn't go down that much, even after giving her some Benadryl. The next morning, when she woke up, her eyes were swollen again. She could open them at least, but just barely. I took a closer look at her allergy report from when she was one. The allergen with the highest reading? dust! And NO ONE bothered to tell me that when I was called with the report. Really people?!? You think you might mention to me that I need to keep my house cleaner? So we are trying to combat the dust in our house; not an easy task. I've set a goal to vacuum the girls' room at least twice a week. I'm also trying to sweep the laminate floors daily. And I'm sure we will look at getting a hypo-allergenic cover for her mattress and probably an air purifier for her room. (if anyone is selling either of these things for cheap, let me know!).
But something still isn't right with her eczema. I didn't understand why we'd use a steroid cream, she'd clear up, but within days of stopping the steroid cream, she'd flare right back up. And of course the dermatologist and physician's assistant we were seeing, were not very helpful. I mean, they definitely tried, but I felt like I was told something different at each appointment. I couldn't keep track of what we should start doing, stop doing, and continue doing. I think this past weekend, I hit my limit. Something about all this just didn't feel right. I did some more reading on NEA's forum and I kept seeing "topical steroid addiction" pop up. Now I had heard a little about this before and I had even mentioned it to the physician's assistant but he dismissed it so quickly, I thought okay, that's not it. But over the last few days, I've been reading more. I found a wonderful blog written by a lady who has gone through with her daughter everything we've been going through with Lucy. Our stories are practically identical (except Lucy's started way earlier in life). I read that blog and just cried and cried, identifying with so much. I found some other blogs with similar stories. I started to feel that this is what we were up against. I also read about how reluctant the medical community is to accept this. How doctor after doctor refuses to acknowledge that some people just can't handle topical steroid creams. Unfortunately, the only "cure" to this is complete withdrawal. It is a long, and very painful process. The lucky ones are "healed" in 9-12 months. Others (who have been using topical steroids for years) take much longer. So now I was torn. Do I put Lucy through this torture in the hopes that in 9-12 months, her skin is clear and she no longer itches incessantly? Do I just keep slathering steroids on her, knowing that continued daily use has horrible side effects down the road? It is an awful, awful decision. And given the fact that there don't seem to be too many doctors out there supporting it....well you can understand my hesitation.
In the meantime, on Monday morning when Lucy woke, her hair looked like a matted bird's nest. The back neckline of her shirt was soaked and there was a spot on her sheet as well. Lucy had scratched her scalp so much overnight that almost the whole thing was raw and oozing. Her scalp had been progressively getting worse this summer and I'm sure you can guess what we were told to put on it: yep, a topical steroid. Which, at the time we did. But I wasn't comfortable doing that with the new information I had. Plus, the skin was oozing; was it even safe to put anything on it? I called the dermatologist's office again and left a message. When they called back, they said we needed to come in for another appointment. Gee, what a shocker. But this time, we were going to see a different dermatologist. A dermatologist who has a pediatric certification. Wait, WHAT?!?! We've been battling this for 2 years and NO ONE thought "gee, maybe this CHILD should see someone who has a background in this?" UGH, whatever. I'm over it now, at least we had an appointment to see someone who maybe was more knowledgeable.
So we had the appointment today. I must say, I like this new dermatologist. He looked at Lucy's allergy report (no one had ever asked me for that before; they just told me it was unreliable and really, allergies don't cause eczema...::eye roll::). He recommended a wheat and dairy elimination diet. We had kinda tried those before, but not at the same time and not for very long. You might think it's incredibly limiting, but Lucy has a limited diet anyway (she's 2 and a picky eater) so we only have to cut a few things out.
He also said he was going to give us a prescription for a different cream (oh joy) that he thought would be really nice for her. Inside my head I was thinking "oh gosh, here we go again..." Finally, I gathered my nerve (preparing myself for the response I was sure was coming) and said "what about steroid cream addiction?" The doctor said almost immediately, "yeah that's a possibility." I was quite simply, stunned. He looked at her arms again and said "this is not typical eczema" and seemed to agree that because of her history with the steroid creams, she most likely was addicted. He then mentioned a doctor out in California who's been researching this and Walker and I were like, yeah Dr. Rapaport! I swear, I heard the Hallelujah Chorus in my head! I couldn't believe this doctor was supporting us in this! So now we have a prescription that is NOT a steroid that will help with the itching. We still have the steroid one for her scalp. We're going to use that for a month. But we are stopping steroids after that. It will not be easy. I'm dreading it. I know we will probably not get a lot of sleep. I know Lucy will be pretty miserable. But I also know it will be worth it. I know if we can get her off these steroids, we will have so many other ways to combat any eczema that might flare up again. I'm also feeling hopeful for the diet change. More and more, it appears that eczema is the body's way of telling you there's something bigger going on. I don't think it's a coincidence that Lucy's skin started getting really bad when she started eating more and more table food.
I know I will be praying a lot in the coming months. I think God has already answered a huge prayer in that we have found a dermatologist who will support our decision to get off steroids. I'm scared about the coming months. I have a very good idea of what they could and most likely will be like for us. I'm praying for a miracle. I'm praying the itching and burning from the withdrawal will be kept to a minimum. I'm praying she won't get any staph infections. I'm just praying that one day Lucy will have beautiful skin and that she can be a normal kid living a normal life.
I'm going to try and do regular posts on her progress. I also want to take pictures. They may not be pretty pictures but hopefully over time they will show improvement.
And I think I need to add in here, I'm not saying topical steroids are evil. They do have their place and they do work for a lot of people. They just don't seem to work well for us.
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