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.

The Upshot

We've already established that I'm terrible at keeping up with blogging, especially when real life beckons with  such a persistent "MommyMommyMOMMY!!!" We were able to stay on Diana's elemental diet for a little over a week. After the third day we added oatmeal back into her diet because we thought it was very unlikely she was allergic to oatmeal. After the fifth day we added wheat back in because no one in Joseph's family has an allergy to wheat, but we took out fruit and corn because after talking with Joseph's mom to get some ideas of family history, it sounded like there were some fruit and corn sensitivities when the kids were little. Every day I took detailed notes of what Diana ate and how itchy she seemed to be as well as taking pictures every morning and evening of her skin quality. At the end of our experimental diet, we assigned her itchiness and skin quality a numerical rating (1 through 5) and compared it with the presence of possible allergen groups in her diet each day. Then we graphed her itchiness and skin quality for each day. Not SUPER scientific since the numerical ranking was fairly subjective, but we tried to be at least a little scientific about the whole thing. Here are some things we learned:

• "They're unlikely to have environmental allergies at this age" = nonsense. As restrictive and difficult as this diet was, our observations were also largely inconclusive. Our graphs suggested that there might be a slight sensitivity to wheat (with a 24-hour delay in affecting her skin quality and itchiness), which surprised us since there isn't a family history of wheat sensitivities.
• Diana's itchiness and skin quality are almost completely unrelated. She was itchiest on some days when her skin was almost perfect, and the days she didn't scratch at all, her skin was at its worst. 
• Oral Allergy Syndrome (OAS) is a thing. When Joseph's mom told us some of the kids were allergic to fruit, I was floored. I admit I did not take that information gracefully. God makes pure, natural fruits out of sunshine and dewdrops, and my daughter can't HAVE ANY??? I did a lot of research into fruit allergies. Most of my non-anecdotal information came from the Mayo Clinic and the website of Dr. Adrian Morris of the Surrey Allergy Clinic in London. It seems that people who are allergic to certain kinds of fruits can  actually have a sensitivity to allergy-provoking pollens. For example, the major allergen in birch pollen has a similar structure to the major allergens in apple, hazelnut, carrot, cherry, pear, tomato, celery, potato and peach. Birch pollen can cross-react with the allergens in any of these fruits and vegetables and people with a birch pollen allergy can have a sensitivity to any or all of them. Symptoms of OAS include tingling of the mouth, tongue, and throat or a localized itching reaction on the face around the mouth. When I gave Diana a handful of sunflower seeds as a healthy snack one day, her cheeks flushed red and she started scratching around her mouth. Sunflower seeds fall under a possible ragweed pollen sensitivity, so she may have to watch out for that one day, and she may also be sensitive to anything else that cross-reacts with ragweed pollen (bananas, melons, tomatoes, honey, chamomile tea). Here are the major OAS food-pollen allergen groups:
• Birch pollen: apples, carrots, celery, hazelnuts, plum, wheat, fennel, walnut, peaches, pears, raw potatoes, parsnip, onion, buckwheat, honey, nectarine, cherry, peanut, tomato, spinach, kiwi
• Ragweed pollen: bananas, melons, tomatoes, honey, chamomile tea, sunflower seeds
• Mugwort pollen: apples, carrots, celery, melon, kiwi, peanuts, various spices, chamomile tea
• Grass pollen: melon, tomato, swiss chard, orange, wheat
• Latex (not a pollen, obviously, but still a sensitivity associated with food):

What we're doing now

It was a bit disappointing that there were no definite correlations between food allergies and Diana's skin, but it was at least relieving to be able to rule out some potential allergens that I'd been unsure about. She spent a whole week without dairy or eggs and her skin condition and itchiness went all over the place anyway, so it seems unlikely that she's allergic to those. 

Since she showed a possible slight sensitivity to wheat, we decided to try a gluten free (GF) diet for a week and see if that affected her at all. Interestingly, despite the fact that there's no family history of wheat sensitivity on either side, we started seeing changes in her skin after only a few days. I noticed that the raised, rough, red, almost calloused patches on the inside of her thighs and backs of her knees disappeared. Though it was still itchy (maybe itchier?), her skin felt softer- like normal, healthy skin. Since I'm the person who spends the most time with Diana, that was a big change to me, although it was more difficult anyone else to see. The biggest and most unexpected side effect was that Diana's nose cleared up. She has had an almost constant stuffy nose for more than a year, and she was always sneezing and having a hard time breathing if her mouth was otherwise occupied. After less than a week without wheat, her congestion just went away! That was definitely noticeable to more people. It feels like a small victory to have something to show for all our diet and allergy speculations. Diana has been GF for more than three weeks now! She's too young to understand about allergies, but it seems to work if I just tell her that she can't have whatever wheat-based food she's asking for and offer her rice crackers, fresh or dried fruit or cheese instead. Her sensitivity is fairly minor, so if we have lunch at someone's house and she eats some bread or pasta, it doesn't set us back too far. 

UNfortunately, Diana's skin is currently a wreck. Like with so many flare-ups in the past, I don't really know what could be causing it. We have been using Arm & Hammer Free and Clear Detergent in the laundry. We ran out a couple months back and I bought Purex Free and Clear, because I assumed all free and clear detergents were the same. [Sitcom laughter.] Both kids' skin broke out and after about a week I realized it was the detergent. We went back to A&H, but their skin didn't improve much. It's possible they may have changed their formula somehow. After about a week of having my heartstrings pulled by watching Diana cry and bend her nails backward ripping at her legs, I was feeling frustrated and lost and found the website solveeczema.org. I may have been a little weepy that week, but I did actually cry while reading it and the blog of a mom who fought her son's severe eczema with the plan from the Solve Eczema site. Their approaches- the background, the science, their hypotheses, and testing- just made sense. The bottom line is the difference between detergents and soaps. Go to the Solve Eczema site to read about it if you're interested. Normally I hate anecdotal cures relating to eczema, because everyone has an eczema story. "Oh yeah! My grandma/mom/son/grandson/self had eczema on their hands/face. It was so itchy, but they grew out of it/found a lotion that helped." That kind of story is COMPLETELY NOT HELPFUL. You just have to look at my children to know that their eczema is not like the mild eczema your child had on their hands when they were a baby. But moms who deal with moderate-severe eczema are troopers and scientists who are devoted to finding cures for their kids because they have to watch them suffer every minute of the day and night. These moms in particular make a good case for switching to soaps vs. detergents. We're trying to make the switch, but we're also working on finding the right soap products that won't irritate the kids' skin. It's another long process, but it seems like a worthwhile thing to try.

And that's where we are. Aside from her skin problems, Diana is an incredibly smart, growing girl. She loves running around and being with her family. She can count to ten (five, reliably, but ten when no one's looking) and is learning the alphabet and having fun with discovering puzzles and asking "why?" about almost everything. She loves reading Dr. Seuss books and sometimes surprises me by opening them up and reading them herself. (She has a good memory!) She is disarmingly sweet sometimes and stubborn other times. I guess that's a two year old!

Liam is 19 lbs with three teeth and beginning to get around. He's a tank of a little boy who loves his sister, the dog, his dad and his mom (almost in that order). He sits up, rolls across the floor and swims in circles on the hardwood to get where he wants to go. He's enjoying more solids and is happier as a result of getting more food. He's trying out lots of different sounds in his baby talk. He especially focuses on imitating Diana, and many times just seems content to let her do the talking. His interests especially include pulling hair and eating paper. 

Liam at eight months old and Diana smiling for the camera.

The Third Day

Diana's leg in the morning after scratching. Ouch!

Left hand healing up.

 Today we decided that it was extremely unlikely that Diana was allergic to oatmeal. (Who's allergic to oatmeal?) We added that back in to her diet, but after Joseph reminded me that his family had sensitivities to artificial colors, we made sure to take out anything with artificial dyes. Despite being incredibly itchy in the morning, Diana spent 10-15 minutes on the potty again without scratching! She ate things like meat, corn tortillas, oatmeal, grapes, beans, orange juice, but still didn't scratch at ALL when I changed her into her PJs for nap time. The rest of the day there was only some occasional light scratching.

Some healing on her left leg. 

Ankle is looking a little better.

Right leg. It's better than it has been.

Day 2

Diana's trouble spot. Despite her lack of itchiness on Day 1, her skin condition actually worsened.

Ankle healing up.

Diana was very itchy when I changed her this morning. Come to think of it, she's very itchy EVERY morning. As we saw over the course of this diet, her itchiness doesn't really correlate with her skin quality. Sometimes it is more closely related to boredom, anxiety, habit, and in the case of scratching in the morning, probably dryness from not being moisturized or hydrated all night.

Diana's diet was basically the same as yesterday since we had leftovers: corn flakes, fruit, meat, and rice. She'll still scratch when her clothes are off, but it's much less than normal. She also still scratches when she's upset. Unfortunately, I stayed over at girls' night way too late with the kids and Diana became a tired, weeping mess, so there was LOTS of scratching when we got home long past her bedtime. There was so much crying that I forgot to even get pictures of her skin.

Allergy Diet Day 1

Diana's leg on Day 1. This is before she really got to scratching it.  She was very itchy.

Diana's ankle on Day 1. This is about as bad as it gets. She scratched it until it bled.

Backs of Diana's knees. This isn't as bad as it gets.

Diana woke up and like most mornings she was VERY itchy. She scratched her legs until they were bleeding in just the time it took me to change her diaper. Incidentally, this is why it's taken so long to potty train. I can't just sit her down on the potty for 10 minutes because she'll ruin her skin in that time. With the exception of one random day last year, there has never been a time since she was three months old that she hasn't taken the opportunity to scratch exposed skin. I'm not exaggerating. She can't wear shorts or dresses in the summer because her knees are "hot spots."

It's not that hard to find foods that are wheat-free, or dairy-free, or even nut- or egg-free, because they're common allergens. But it turns out to be nearly impossible to find food that don't have ANY of those ingredients. Even gluten free products have egg or dairy, or egg-free products have nuts, etc. We basically put Diana on a diet of meat, rice, vegetables, fruits and her multivitamins.

That morning, Diana ate some corn flakes, an improvised stir fry ("meat and rice") of jasmine rice and roast beef, a multivitamin and her orange juice. After her nap, she had a baked potato, some grapes and a rice cake. Then she sat on the potty for some potty training and SHE DIDN'T SCRATCH HERSELF. It was miraculous. For 10-15 minutes she didn't scratch. She just sat there talking and reading books like any other kid. I suspect that even if she isn't itchy, she has been scratching herself for so long that it's just a habit, so the fact that she didn't even feel the need to do it out of habit was incredible.

That night for dinner I made gluten free corn dogs that she ate with rice and grapes. Some of the oil from the fried corn dogs got on her face and made her itchy, but after a bath she was good as new. In fact, she miraculously DIDN'T SCRATCH HERSELF again! Not at all! It was absolutely amazing!

Diana's legs before bedtime on Day 1.

The Allergy Diet

Let me share with you some things that I dislike:

Country music, homeowners associations, speed bumps, wet socks, drippiness, cooked fruit, swearing, the entire American medical system.

You read that right.

That's only a partial list, of course.

I know modern medicine must do some good. I suppose I never got polio as a child and I can thank my vaccinations for that. I've never had a doctor tell me something that wasn't common sense in the first place and the part I hate most is that it is SO EXPENSIVE. How on earth can everything be so expensive?? Insurance is a player (one that I also loathe), but that can't be all of it.  I had a friend who had her baby in the hospital and it's a good thing she did- she developed preeclampsia and the labor was risky. Her insurance ended up paying roughly a quarter of a MILLION dollars to the hospital for that baby. She was only in there for about three days. There was no surgery required. Do you know her HOUSE didn't cost that much? That's partly why, if I can help it, I don't want to see a doctor unless there's a very good chance they could save me from dying. It's also partly why I try to have my babies at home.

Diana's doctors have been moderately helpful when it comes to her eczema. Her pediatrician recommended using scentless laundry detergent without softener and her dermatologist recommended diluted bleach baths once a week to keep the inflammation down. But the rest was two long years of trial and error: trying countless soaps and lotions on her and having to throw them out every time they gave her a new rash, trying antihistamines, experimenting with all my cosmetics to find brands that wouldn't affect her skin, introducing new foods while watching for allergic reactions, keeping her constantly clothed so she couldn't reach her "hot spots." And you know something else I hate? Watching my child in agony. It's annoying that she can't wear cool, fun shorts and dresses in the summer, but it kills me when she sits down and scratches (tears, really. It's vicious.) at her skin until it bleeds, crying the whole time because she can't stop. I hate having to try to get her to stop something as natural as scratching an itch. (Once she starts, the scratching just makes her itch more.) She begs me to let her scratch sometimes and I feel so bad for her. Her pediatrician and dermatologist prescribed antihistamines, but none seem to be more effective than just keeping her skin covered up. They gave her 2.5% hydrocortisone (ineffective), then a "moderate" steroid (also ineffective), then a "stronger" steroid (effective for a short time, but made her rash appear more strongly in new places). Because we were just treating symptoms, I wanted to get to the bottom of things and tried to make an appointment with an allergist. I talked to our insurance provider and the allergist's office. For an initial consultation, it was going to be somewhere between $200-$700.

Is this normal? When people say they took their kids to a specialist, do they routinely pay hundreds of dollars per visit? If I felt like I had no other options and an allergist could most likely help my kids, we'd definitely do that. But as our pediatrician verified, a blood test is most effective in kids older than Diana. Instead we decided we'd go back to basics and look at what the pediatrician and dermatologist both told us was the most likely cause of children's allergies: food.

My family is blessed to not have any real food allergies. And though I love Joseph's family, they collectively have allergies to everything under (and possibly including) the sun. A lot of Joseph's siblings grew out of their allergies. However, Diana has aunts and cousins with allergies to dairy, peanuts and artificial dyes. Whenever Diana eats uncooked or undercooked eggs (like runny scrambled eggs or cookie dough) she throws up, so we suspected an egg allergy. She also has a peanut sensitivity (not allergy, thankfully), so we never give her anything with any tree nuts, just to be safe. After running it by her pediatrician, we decided to put her on a diet that excluded major and known allergens. For Diana, that meant no nuts, dairy, wheat or oatmeal. During that time, we kept a detailed record of what she ate, her skin condition, and how itchy she was. We also took pictures of her trouble spots (ankles, backs of her knees, insides of her thighs, and hands) every morning and evening so we could record changes in her skin. Since Liam has some eczema problems on his cheeks, I went on the diet with her. Eating the same foods also gave me an accurate gauge of how hungry she actually was. (It turns out you can eat rice cakes forever, but they'll never be as satisfying as some cheese and crackers.) We stayed on the diet for a little over a week, and for those of you dying to know, I'll post the daily logs HERE!