Day 22: Deep Breath

I spent the entire morning reading websites and blogs about topical steroid addiction and withdrawl. It sucked me in, left me in tears, my heart breaking for other kids who have gone to dermatologists, been prescribed steroid creams in the blink of an eye, are now unable to cope without them. This is the cycle that countless other babies and toddlers with eczema are sucked into. They have mild eczema, so they get a topical steroid cream. The steroid cream helps for a time. It then loses effectiveness, so the doctor prescribes a stronger one. They get better for a time, but only while using the topical steroid. Soon their skin can't cope without it. When the child stops using the steroid cream, the rash spreads like crazy all over the body. The doctor diagnoses a stronger flare of eczema, and prescribes a different topical steroid. The cycle goes on and on.

When the child (or adult) finally stops using the steroid, the symptoms are no longer what we identify commonly as eczema. It is a bright red rash that occurs in places other than common eczema areas (knee pits, wrists, ankles, elbows). We are convinced that this is what C went through when we stopped using Triamcinalone, the topical steroid cream that our dermatologist prescribed for us. Her back and torso look exactly like some of the photos of other kids that have gone through this. I feel that we are lucky in that her whole experience was a mild one compared to other stories out there. It is frightening how much worse some other kids have had it, as demonstrated in these blogs: here and here and here. Families don't sleep for over a year; they don't leave their house; their kids only feel relief when sitting in a lukewarm bath. And dermatologists continue to deny the existence of topical steroid withdrawl because the "data" doesn't support it, not to mention that ceasing the prescription of topical steroid creams would be awfully bad for business. Now I'm not a medical doctor, but these stories and research are testimony to me that this is real. Granted, this does not happen all the time with patients who use topical steroids. But seeing my own daughter follow a course similar to exactly what is described in all these stories is real to me. C only used one steroid cream for about 9 months, intermittently, when it started to lose effectiveness. The cessation of the cream resulted in what we identified as withdrawl symptoms. Now imagine how much worse the story could be if we were on multiple steroid creams for years and years - that is what other people with eczema are dealing with. There is now an organization devoted to spreading the truth about topical steroids, and I hope that eventually there will be quantifiable research that supports this, and that the dermatological community will recognize that topical steroid addiction is real.

We've made a decision to no longer use topical steroids on C, and I am hoping that as time passes, her body will continue to heal. The most useful part of our appointment with the allergist yesterday was the blood tests to identify triggers. Once we know what she is really allergic to, if anything or possibly everything, we'll be able to try to control how much exposure she has to each food or allergen. One point the allergist made is that eczema and allergies are not dependent on each other - allergic reactions manifest themselves in the form of eczema for those who have it, but eczema is not always a result of allergies. Likewise, plenty of people have allergies but never have eczema. So this is part of the process for us, but not necessarily the solution.

After having a clearer idea of what is happening with C, I am feeling more confident that we can fight this and that her body will continue to heal. Her teachers at daycare have commented on how she is happier lately, and that whatever we are doing differently is working better (mostly apple cider vinegar, longer baths, lotion right after bathing). They haven't heard the whole story about how she just went through the worst part of what we believe is topical steroid withdrawl. But there are plenty of other methods of dealing with eczema, and I continue to pray that her little body will grow out of eczema, and that it will not have a permanent effect on her.

We are going to stick with homeopathic remedies for now. I ordered coconut oil and shea butter today to try some natural moisturizers. My faith in American medicine is at an all-time low. I am not going to give my daughter epinephrine every time she has an eczema flare. That could be countless times per day! She flares from things as simple as sitting in her carseat, and the doctors mean to tell me that putting more drugs onto and into her body are the answer every single time? Are these doctors going to be responsible for the long-term effects of these drugs? Are they going to be the ones that trace the effects on her immune system, her hormone production, her behavior?

No, that is our job as her parents, and I feel fiercely protective over her right now. Doctors do amazing things, but they are not always right, even ones that work at major hospitals in big cities.

I am angry and incensed at what I've read today. I sound like a crazy hippie, but I don't care. I will never stop being grateful for the current state of our health, for my husband's savvy in the area of drugs and pharmaceuticals, for our good sleep, and for a God that loves us and answers prayer. Taking a deep breath and feeling calmer than I was this morning. Moving forward. There is hope.

My pretty girl chowing down on her yogurt tonight