The ins and outs of eczema

People who are concerned by Diana's eczema will occasionally ask me if we've figured out what causes it yet. Yes, we think we have. After many weeks of frustration, I sat down the other night to diagram what we knew about Diana's eczema. This is what I came up with:

No problem, right? 

• Topical Allergies: Her topical allergies include: cocoa butter, sunflower oil, coconut oil, anything with fragrance, animals (dogs, cats, horses, etc.), carpets and upholstery (possibly due to the soap/chemicals used on them?), and a host of other things we haven't identified yet, including some ingredients in different brands of "free and clear" laundry detergents. Basically, any time we leave the house or see friends and relatives, Diana needs a bath/shower/to be wiped down with a warm, wet washcloth that has been washed in Arm & Hammer free and clear detergent. 
• Dry Skin: The moisturizers we use to help her dry skin can't have anything in them that she might be allergic to. So far, that leaves Aveeno Eczema Therapy Cream (when her skin isn't too scratched up) and Vaseline.
• Yeast: Even if her skin is generally doing well, sometimes yeast may colonize her skin which makes her itchy. We need to give her bleach baths occasionally just to keep her skin clear. Unfortunately, chlorinated water dries out skin. 
• Sugar: One mini marshmallow or even one M&M doesn't seem to do much, but give her an entire cookie and Diana's hands instantly go to her face to scratch. Somehow she reacts to too much sugar. 

I forgot to add that it's important that her skin can breathe, so she has to wear all-cotton everything all the time. 

Also, we have no idea where her food allergies figure into making her itchy. When we tried an elimination diet, nothing seemed to really make her skin much better. We're pretty sure that the allergies that affect her skin are mostly topical, not food-related.

The factors that contribute to scratching are, if possible, even harder to address because some of them are just a consequence of being an almost-three-year-old. Skin irritation is probably the easiest thing to control. We have to make sure her clothing isn't at all scratchy or too tight (unfortunately, the tights we use to keep her from getting at her ankles and knees are tighter than nice, loose pants). But how do you keep a child from being bored?? I think it's healthy for kids to be bored sometimes. It allows them the freedom to develop some creativity and use their imagination. And while I take care of a house and, soon, two other kids, I can't be Diana's full-time entertainer. However, when she's bored, she'll often default to scratching, which makes her itchy. Another big factor is stress, which also seems impossible to control. The world is a new, uncertain place for toddlers, and when she's uncomfortable with a situation, Diana will often scratch. The world can also be a frustrating place when you figure out there are things you can't do. Trying to mold a smart, frustrated, itchy toddler into a good and happy person results in a lot of angst for both parties, and a Diana who is unhappy about being sent to her room or told she can't do something will invariably scratch. In fact, more commonly, I can't allow her to go to her room or out of my sight at all because she will pull her gloves or tights off and scratch at the slightest opportunity.

Emotional Eczema

While I was doing some recent research about eczema, I came across two interesting articles. The first was entitled "Psychosocial adjustment in preschool children with atopic eczema," written in 1993 by three researchers at the University of Machester and published in the Archives of Disease in Childhood. According to the abstract, "The psychiatric adjustment and mother-child attachment in 30 preschool children with severe atopic eczema was compared with 20 matched controls. Patients with eczema had a significant increase in behavior symptoms, with significant excess of dependency/clinginess, fearfulness, and sleep difficulty, but there was no difference in the security of attachments." (I don't know if Diana is overly clingy or fearful, but sleep is definitely an issue. She wakes up usually between 3-8 times each night, and I don't know how much of it is because she's uncomfortable and itchy, but it definitely messes with her sleep cycle at a time when she needs to be getting lots of sleep.) " In relation to the mothers of the children with eczema, the abstract stated, "Significantly fewer... felt supported socially." That's been one of the biggest emotional challenges for me: I feel so very lost and alone. I know I have Joseph to talk to, but Diana's eczema is like no one else's eczema. Sometimes I just wish I could talk to another mother who understood the physical and emotional challenges and the confusion and the frustration and the hope and the anguish. Talking to other people sometimes helps put struggles in perspective, and I don't know of any other moms who are dealing with anything remotely like this. Diana sticks her hands down her pants to scratch or sometimes even removes her clothes and people laugh and tell me my daughter is walking around half naked, but they never seem to notice that I am never laughing too. The consequences of Diana scratching can be setting her skin back for days, and it results in enough unhappiness for everyone in our family that it's really no laughing matter. One night, we didn't use athletic tape to hold Diana's PJs together because she had a cold and we didn't want to restrict her breathing at all. I found her in the morning with her pajamas removed and also all the skin from the backs of her hands. Regardless of how comical people find the situation, I will never laugh when Diana scratches, since this is the result:

The abstract continues, "Significantly more [mothers] felt particularly stressed in relation to their parenting and less efficient in their disciplining of the affected child. Child behavior problems and maternal distress were significantly more common in the more severely affected children." Yes! There's no way to know how much of your child's bad attitude is just being a toddler and how much is actual excusable distress due to their discomfort. I know during allergy season I'm a bear because I can't think or focus on anything else when all the soft tissues in my head are itchy. If life was like that for me every day, I'd be grumpy all the time too! Lately, every day for Diana has been a bad day, and almost every minute of those days is filled with unhappiness. I don't want Diana to be faced with sadness and frustration all the time.

The second article was "Stress in mothers of young children with eczema," published in the Archives of Disease in Childhood in 2007 and written by three authors with The Children's Hospital at Westmead in Sydney, Australia. They evaluated the parental stress levels of mothers of children younger than 6 years old (the average age was 2.8 years) who were receiving care at the hospital for management of eczema. If you have the stomach for scientific papers at all, I'd suggest you read it, because almost everything that they found seems true for me. "Mothers of children aged 5 years or less with eczema exhibited significantly higher total stress scores as compared to mothers of normal children and children with other chronic disorders such as insulin-dependent diabetes and profound deafness. Stress scores in the parental domain did not differ significantly from the scores of parents of children with severe disabilities such as those requiring home enteral feeding and those with Rett syndrome." That seems like a pretty profound result. I don't want to use this to enable my own pity party, but taking care of a child with eczema is incredibly stressful. Just maintaining her skin quality is hard. It seems like everywhere, everyone, and everything negatively affects Diana's skin and we're only safe when we're at home. When we take steps to fix her skin or try new coping methods, it's way more stressful. I know I've said it before, but there's nothing as hard as seeing your child in complete misery just ruining themselves physically. Diana is both the victim of eczema and her own worst enemy. I wish there was some way for me to describe the sadness, the pity, the frustration, the confusion, the hopelessness, the guilt and the alone-ness that has driven me to tears on a daily basis for the last few weeks! Stress in mothers of young children with eczema? Yeah, it's bad. I guess I'm happy that anyone cares enough to write a paper about it at all. 

/Venting

Here's what I know: Diana's eczema is essentially dry, sensitive skin that is affected by a host of things, some of which we don't understand and some of which are mental or developmental or closely related to her personality. There is no one cure for her eczema. We cannot fix Diana's eczema.

The only thing we can do is try to maintain the best skin quality we know how. Occasionally we have to adapt our coping methods to new information, incorporating new suggestions from her doctor, and the fact that her eczema changes as she gets older. It's widely acknowledged that sometimes eczema flares up for seemingly no reason, and I think we're in the midst of a crisis like that now. We're slowly figuring out ways to bring it under control and see our happy, carefree Diana more often. But ultimately, we're anticipating years of almost-constant care for a child with special skin needs. I think a lot of my stress has been fighting the idea that this is the way life has to be for Diana. I'm just starting to accept that the constant itching/scratching battle and all the care that goes into maintaining her skin might be her status quo for years to come. I don't like the idea.

I also know that God is in control. God cares for me and our family and our little girl. If we keep turning this horrible experience over to God in prayer, good things will come out of it. If we keep asking for wisdom, it will keep coming. It's difficult for me to remember those facts when a trial isn't one shocking event, but instead a wearying lifestyle. I think God knows that too, though, and he has shown me that's he's with Diana and me even in the tiring and miserable journey through her eczema.