Sunday, February 24, 2013

A mother by any other name

People say when you become a mother you need to also be a nurse, teacher, etc. I never expected I'd need to become:

  • A voice actor- What, you thought children would be interested in a hungry caterpillar just because it's brightly colored? This is my dream job anyway, so it's kind of fun.
  • A crisis negotiator- Because sooner or later, every child will get themselves (and/or a sibling) stuck without being able to get out.
  • A thief- You only need to try taking the beloved blanket/stuffed animal ONCE to commit yourself to a life of crime. Anything to avoid the apocalyptic scene that comes from blatantly putting it in the laundry.
  • A psychic/crime scene investigator- You're not always in the room when the offence occurs, but you learn to piece together the evidence and sniff out guilt. It's easier when only one of the suspects is really mobile. Or when the first thing they say as you walk in the room to the crying baby is: "Hi Mommy! I did NOT hit Liam with the toy!"
  • A distiller.... of information- In order to explain the water cycle, the solar system, or atomic bonding to a toddler, you need a great deal of education AND excellent communication skills. 
  • A student- Of cooking, of scheduling play dates and outings, of nutrition, of skin conditions, of all manner of bodily excretions, of effective discipline and policy-making, of toddler-appropriate art.... Thank goodness for the internet. I look up and study dozens of different subjects each day. I decided to start a family instead of go to grad school right after college, but I assure you I'm still learning just as much. 
  • An expert- Diana's eczema has taught me that I'm the expert when it comes to my child. I hate going to doctors, but in all fairness, I usually schedule an appointment when I'm at the end of my rope and want them to tell me the magic answer to our problems, as if they just know everything about eczema. I'm the one who is around these kids 24 hours a day. I'm the expert. I need to start acting like it.
  • A pack mule/ Super Woman- I will carry in the sippy cup, the baby in car seat, my purse, the diaper bag, the mail, and the groceries, and I will do it ALL IN ONE TRIP because I'm too lazy to go out to the car a dozen times. 
  • Less of an introvert- "Hey, mom-I've-never-met-before at the park! Want to talk about everything and anything having to do with our children because we're the only adults each other will see until our husbands come home at the end of the day? Super!! We're Best Buds!" I don't think this would have happened if I was regularly socializing with people who didn't whine at me so much.
  • A wildlife photographer- In the December 2012 issue of National Geographic magazine, Mel White writes that an ornithologist (Edwin Scholes) and biologist (Tim Laman) "logged a total of over 2,000 hours simply sitting in blinds, waiting and watching" to capture stunning images of birds of paradise in New Guinea. I hope those men have children, because such patience is exactly what's required to capture that 30 second video I posted on YouTube. The problem with recording the same subjects is that they grow up so fast. By the time you're able to capture the Latest Cute Thing, it may have already morphed into something else. And, as Amber of Parenting, Illustrated with Crappy Pictures, puts it so well: the presence of a video camera immediately eradicates any talent they were JUST demonstrating.
  • An interpreter- "Eddo da!" = "Hello, daddy!"in nine-month-old speak. "Rara!" = "Hungry!" (I don't know why.) And if my toddler starts chirping at you a mile a minute in her voice that's three octaves higher than the average human can hear, it's probably because she's telling you something happy. Heaven help you if she has turned into a kitty. (Kitty voices are an extra octave higher than that.) It's really like being able to decipher the squeaks of dolphins. 

Diana's Eczema

Even itchy girls can be princesses!
Diana's skin is very definitely improving from last week. This is wonderful, but frustrating because we don't know what set her off in the first place or why her skin is mysteriously getting better. I'm still playing with the amount of wheat she can have, so we've probably let her have more wheat this week than she ought to, as I've noticed her nose is becoming stuffy again. Strangely, her skin still feels better and softer (more like healthy, normal skin), though it's still very itchy. It hardly makes sense since I thought wheat made her skin rougher. Again, her skin quality and itchiness seem completely disconnected. I fully expect her eczema to take a turn again before I figure out the reason why, but I'm trying to enjoy this time of better skin quality while it lasts! We'll be trying potty training again this week and I may ease off on wearing her tights under her pants, at least unless she starts scratching her ankles too much. 

Saturday, February 16, 2013

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.


Thursday, February 7, 2013

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.