Monday, January 12, 2009

My daughter's Journey

Although I often find myself sharing bits and pieces of my oldest daughter's story, I have yet to write it out with all the minute details. And those minute details will only get fuzzier as time goes by.

So here it is, in hopes that others can learn from our mistakes.

Penguin was what's known as a "happy spitter". In hindsight, she had all the hallmarks of classic reflux, but I was a first time mom. It didn't seem odd to pack 2 changes of clothes for her, an extra blouse for me and some receiving blankets to use as towels just so we could dash to the grocery store. That's why we had a diaper bag. And in the words of our pediatrician, all babies spit up. Some parents worry more than others. *smile*

So we didn't worry. I learned to sleep with her propped on my shoulder until she was crawling, because if she went back in the crib after that midnight feeding, she'd spit, choke, and we'd be up all night.

Dutifully, we introduced rice cereal just before she turned 6 months old. She started spitting up less, and slept a little better. "Of course, it stays with her longer than mommy's milk" our wise pediatrician told us. We never thought about the thick porridge simply being easier to keep in.

Soon afterward, we stayed with my inlaws for a few days. I took a nap, and was woken by a screaming baby.
"She wants mommy," my mother in law shrugged.
But my daughter had never cried like this before. She sounded as if she were in pain. She spat up, and it was discolored. I called the dr.
While waiting anxiously for him to call back, my sister in law suggested I feed her more yoghurt.
Apparently she'd been hungry earlier and they'd gotten almost an entire carton of yoghurt down. That explained the funky spit up. The pediatrician called back, gave me a lecture on early dairy introduction (don't do it) and told me to ride it out.

She didn't scream like that again for almost a year, when we introduced cows milk. She screamed as angry bubbles gurgled in her tummy, and I prayed it wasn't really an allergy. The pediatrician reassuringly suggested we wait a few weeks and try cheese, instead. Cheese is easier to digest.

Around this time, she also began complaining of headaches. She'd insist on playing with the curtains drawn. "Light hurt!" Classic migraines, which her father and I get too. We thought the poor kid was just starting early. And man, was she susceptible to "the stomach flu". But it couldn't be the cheese. Cheese is healthy, the dr assured us.

When she collapsed on the ground, pale, sweaty and screaming hysterically,we raced to the pediatrician. "Did you try Tylenol?" A sheepish "no". He told us to try Tylenol next time. No fever, no vomiting. (that came later, and we were assured, was migraine related.) It couldn't have been the mac and cheese followed by ice cream. No way. Nuh, uh. Dairy foods are important, remember? Calcium is vital to growing bones.

I did start to suspect that there was some sort of dairy issue. It tugged at the back of my mind. But, it wasn't blatant. No rashes. No prolonged vomiting. She gained great. Everyone told me I was paranoid. And frankly, I didn't feel that great myself so it was easy to ignore the red flags.

We decided it might be a "tolerance" issue. We avoided liquid milk, the occasional accidental sip at church or a friend's house gave her horrible tummy aches. But cheese was okay, at least in moderation. Sure she still got tummy aches, but those were from overeating. Or excitement. Or, something. Kids get tummy aches. You hug them and put them to bed.


At some point we went back to the doctor. We saw a pediatric GI. We did some testing. We found nothing. "She's got you wrapped around her finger," he said waggling his own finger. He told me to quit worrying. (Interestingly enough, I read the GI doctor's report recently. He write that the "mother", me, had obvious symptoms of Celiac Disease and definite Dermatitis Herpetiformis. So much for "rosacea" and "stress". I still wish he'd explained those things to me, personally. He did not test Penguin properly for Celiac disease.)

She was an extreme child. She'd run away and when caught and scolded, she'd soon turn pale and sweaty and have a headache. The doctors told me it was migraine. "Geesh, she's starting early." And that at her age, all we could do was give her Tylenol or Motrin and put her to bed. Give her lots of hugs and snuggles.

We'd fight over tooth brushing. I'd put the baby in the crib, pin Penguin down, scrub those teeth and let her spit. She'd cry. She'd apologize for being difficult. She'd complain of a headache. I'd hug her and tell her that if she wouldn't fight so hard, she wouldn't get a headache. Then we'd go through the process again.

She developed cyclic vomiting. "It's migraine related," I was told. Don't worry. No, not food. Don't take her off dairy. She's a growing girl. She needs the calcium. Just keep tabs on anything acidic, like OJ.

We learned to adapt. After all, I didn't feel that great myself. I focused on whole foods, finding that perfect level of health. My husband commented that he felt so much better, and I wondered why it wasn't helping us?

I started to worry that there was something serious when I found my 4 y/o curled up under the slide holding her head, and she asked me if we could invite some kids home so she could lay in bed and listen to them play.

That's not normal.

The dr shrugged helplessly.

When the baby was dx with a nut allergy, the pediatrician tapped his chin and suggested that we look for foods as a trigger for Penguin's headaches. I found several books on the subject. We tried an elimination diet. The rash on my face cleared up (An ah-ha moment for me) but her headaches were still there.

The doctor told me to use Motrin and Tylenol. He gave me the "safe" high end dose for her weight (not the one on the package) and I bought them in different flavors so that she could differentiate which made her headache worse. She claimed Motrin made her head hurt. "Impossible," the doctor said. Next month, she complained that Tylenol made her head hurt. The doctor suggested we look into a behavioral cause, rather than honest to goodness pain. If it weren't for the sudden loss of color in her face and the way she seemed so frustrated by her headaches, I'd have believed him.

When she entered Kindergarten, the school called on a regular basis to have me pick her up. The first time I found her covered in blue vomit, I said "Ew." The second time it happened, I remembered the grape flavored medicine. I told the teacher not to serve her any more fruit chews or jelly beans during math lesson. She spent less time in the office.

We noticed that her toothpaste was blue, and switched to Tom's of Maine.
She began brushing her own teeth and the nightly headache went away. (I still feel like a heel)
But we only had a piece of the puzzle.

She was still getting headaches, just not quite as spectacular. Every birthday party resulted in tummy aches. So did school parties, and hot lunch. We called it some sort of lactose intolerance, and blamed the rest on excitement.

There are things we choose not to believe.

We went through allergy testing, found that she was allergic to grass (which explained the mystery hives after PE) and certain trees (we later traced tree-tag to headaches and rashes, as well) We were put on a more thorough elimination diet. She got better, but not 100% after eliminating dairy. And she got an "unrelated" sinus infection that wouldn't quit.

We started working on the sinus infections. She was running fevers of 105, 106. I'd walk in to check on her and could smell her cooking. The fever would break within an hour, and we were told that was good. Just a sinus infection. Use pseuphedrine. Push fluids. Here's some flonase and antibiotics.

Eventually, we discovered that her adenoids were blocking the drainage from her sinuses. Given the excessively high fevers, we opted to remove them. Sinus infections gone.

Headaches with vomiting still present. On to medication for migraines.
(Meanwhile, I was dx with celiac and a host of other food intolerances.)

After the migraine medication worked for a period of time, Penguin commented that it was weird that she still threw up. This was news to me, and she gave a vivid description of reflux. She considered it normal. Just like going to bed with a tummy ache after a birthday party was normal. It was a good thing we knew to avoid blue sprinkles, because a headache on top of those tummy aches would have been really bad.

Back to the doctor. Reflux is associated with dairy. It wouldn't hurt to cut it out. But give it 6 weeks this time.

During those 6 weeks, she had only one tummy ache with vomiting. It followed a glass of chocolate rice milk that contained whey protein. At the end of 6 weeks, my 8 year old turned down pizza or macaroni (two favorite foods) because she didn't want those tummy aches back. I realized that I no longer had to change her pillowcase daily. She didn't have a sore throat in the mornings. She slept a little better, too. And we were able to successfully cut back her migraine meds.

The best part? Instant improved confidence. She wanted to go on playdates. She was glad to go to Girl Scouts and birthday parties. And she told me how to best advocate for her needs.

Since then, we've added gluten to the mix. I worry about limiting her too much, and making her feel "different". She's not anaphylactic, and as far as the doctor could tell there was no villous damage (yet). The gluten was for residual headaches and family reasons. (Plus, when she got inadvertently and secretly "glutened" it caused physical symptoms.) But as she tells me, it's harder to be sick in front of your friends than it is to not eat what they eat. Of course, that doesn't mean it's easy to say no to cookies.

My grocery bill is sky high, I don't know what to make for dinner, and some days I just want to go back to bed and call for pizza.

But my daughter is healthy, and that's what matters.
Rice pasta anyone?

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