Struggling

We are struggling with Diana's eczema in so many ways right now.

On the one hand, since making this eczema fight a priority, I feel like I know more about it, have a better idea of some root causes, and have some concrete ideas of how to overcome them. The Solve Eczema website and blog and related forum and the blog Sammy's Skin have been wonderful resources and great sources of encouragement. We know from our allergen diet that Diana has a sensitivity to wheat that affects her skin. I am interested in trying to make our house detergent-free and treat any yeast/bacterial infections Diana may have on her skin to see if that affects her eczema. That is my big experiment this year.

But there are just so many setbacks! I feel like every time we try to take a step in what might be the right direction, we just slide back a little further.

We ordered a trial pack of products from Cal-Ben Soap Company. I knew that there would be some risks in trying new products. Every time we try a new soap or lotion that doesn't work for us (and we have tried a LOT), Diana's skin breaks out for a week and takes another week to clear up.  Most recently, I tried Purex Free and Clear laundry detergent, assuming that all Free and Clears were the same, and both kids' skin broke out. From the trial pack, we mostly tried using Cal-Ben's laundry powder, bar soap and shampoo, since I figured those contacted her skin directly and I wanted to see if there was any big change from using them. The laundry powder may have been good for her skin, but it was hard to tell because at the same time, the bar soap made her break out in a rash that STILL hasn't completely gone away. In fact, it caused her to start scratching at her stomach, face, and arms which may have led to her eczema spreading to those areas. Oddly enough, it's also spread to her eyelids, so with her swollen, crusty eyelids she looks sometimes like she's been beaten. So, though it's hard to believe, her eczema now is actually worse than it was during her allergy diet when we were so desperate. It covers more of her body and her skin looks angrier and redder. She can't sleep well at night without oral antihistamines. Carrie pointed out that Cal-Ben isn't the best bar soap to use, so I'll take a look at the Solve Eczema blog's list of recommended bar soaps and pick another product. If we can find one that works, I'd still really love to see whether soaps instead of detergents will help us with this eczema. Additionally, I suspect the Arm & Hammer Free and Clear laundry detergent we were using before our Cal-Ben experiment (and that we're currently using, since I ran out of the Cal-Ben laundry powder) may have changed their formula somehow, because her skin is not "improving" to its former state.

I'm really starting to struggle with this emotionally. It sounds silly since I'm not the one suffering with constantly uncomfortable skin. But I want to protect Diana and I don't know how to protect her from herself! It is so difficult to watch her claw, rip, tear at her skin- this is not hyperbole!- until she bleeds, while crying because it hurts and she can't stop. I thought we were safe with full-length footie PJs, but she figured out how to pull an arm in to scratch her legs, back and stomach from the inside. If her fingernails grow out at all, they are bent backward from the force of her scratching. There's literally nothing that can distract her from her scratching trance. Diaper changes and bath times are ordeals. Potty training is basically nonexistent. And while it may seem trivial, it is a little annoying to see younger children master potty training when that's not something we can focus on yet. (Plus, I hate changing diapers.) I could call it anger or sadness or frustration because they're all true, but the word that might best describe what I feel is grief for my daughter. I grieve that she is in such pain- my poor, sweet girl who never did anything to deserve this!- and I can't fix it. It's hard to believe that it could have gotten worse, but somehow it has! And she has to live with it. I so much just want to make her better. I've told my husband that it's frustrating because I just feel so lost. It brings me to tears sometimes. I just want her to be healthy and I don't know how to get there.

I hope that when she grows up she won't remember much of this. Sometimes it looks and sounds like a war zone: blood on her sheets and clothes, Diana screaming at the top of her lungs while I try to restrain her long enough to moisturize her legs and put her clothes back on. I smile at her and try to talk to her about anything at all that might take her mind off her itching, but when it gets this bad I just want to cry with her. I will probably always think about these days, but I'd like it if she could forget. If she went through her life with mild, manageable eczema, needing to use a moisturizer for sensitive skin now and then, I'd consider that a success. Just as long as it's not like this all the time.

After all that ranting and gloom, there are some positive things happening.

Happy, handsome Liam!

-Liam's eczema was mostly on his cheeks and all over his back, with little patches on the insides of his elbows and on his lower legs. Not like Diana's, never that severe, but raised itchy red patches. After using the Cal-Ben bar soap on him during bath time for about a week, his eczema cleared up COMPLETELY. There is one spot about the size of a fingerprint on his back that hasn't gone away, but the rest of his eczema is just gone! Occasionally during the day something will make his face break out a little, but it's just so wonderful to have it mostly gone!
-We learned that wheat affects Diana's behavior as well as her skin. After our successes with Diana on a gluten-free diet, I wanted to establish the maximum amount of wheat she could have without it really affecting her skin or making her stuffy. It was a little tricky because the effects of the wheat appear to be cumulative with a 24 hour delay, but I started with some Goldfish crackers during the day or pasta at night. After a couple of days her stuffy nose started coming back (but she was also getting over a cold around then), but mostly I noticed the most appalling behavior issues! HATEFUL, ANGRY screaming at the top of her lungs at me multiple times a day over the littlest things, blatant defiance (or waiting until the last possible second) when I told her to do something, angry glares, screaming tantrums in public... Even at her worst, that's not my Diana at ALL. She's always been a sweet girl who would wither with one look or stern word from mommy. I cut out wheat again completely and you know what? We haven't had any of those problems since then. I think the safest thing is keeping her on a gluten free diet and just letting her have wheat in the most dire of circumstances- like if we're at someone's house or traveling and there's nothing else to be had.
-I realized I wasn't using the resource that is most useful in confusing situations like this: PRAYER. (Duh! How do I always forget that one?) I know that God can do anything, and it certainly doesn't hurt to ask if He could heal Diana. Also, James 1:5 says "If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you." So I have been trying to pray regularly for healing for Diana and also for the wisdom to know how to help her. Even if it's hard to get a clear idea of what I need to do, praying and being closer to God always makes me feel more peaceful. And while we're in the middle of trying to figure out how to fight this beast, that could only help!

Diana playing at the park.