Sunday, July 11, 2010

Allergies: when all else fails, eliminate everything

So much time has passed, and Amalie has changed so much and so have we, that I will fill in the details one subject at a time.

After I eliminated all dairy protein from my diet, Amalie continued to be sick. The pediatric gastroenterologist was, I think, skeptical that I followed his directions properly. But he graciously moved on to the next box in the flowchart anyway: radical elimination diet for me. What it meant was rice, rice, rice. I found ways to, for example, get in a breakfast-y breakfast: MMMM, organic Rice And Shine cereal with rice milk. It was kind of funny in a pathetic way. Every morning I would pout "But Maaaaa, I don't want Rice And Shine!" I was eager, though, to see what I was confident would be a remarkable transformation in baby.

Two weeks down the road, the blood in Amalie's stool began to wane. But it did not stop. The doctor ordered an upper-GI x-ray series to see if she had any gross structural abnormalities. Boy is that NOT how a baby likes to spend her time: strapped to a board, forced to eat glow-in-the-dark chalky formula, and rotated like a hog on a spit in a noisy machine while some random woman shoves an iPod disguised as a teddy bear in her face. Amalie screamed bloody murder throughout. But she did look cute in the tiny surgical gown, which featured space koalas (space koalas??). The x-rays came back completely normal.

I continued to receive the evil eye from the gastroenterologist, who was clearly convinced that I was running home every day and eating piles of tofu, bread, and cheese before breastfeeding my child. It was the last resort, but he ordered a colonoscopy. No infant should ever have to have a was so sad to see her don a surgical gown again (yep, space koalas, only with a purple background this time), then be sedated and rolled into the operating room. She tolerated this procedure much better than the helps to be unconscious. Coming out of anesthesia was a different matter, though!

The doctor had clearly never seen pictures this clear in a child so young (I will spare you the visual evidence): Amalie's colon was like a spent minefield. The tissue was covered in bloody sores, and in some case the sores had sores of their own. Allergic colitis was the diagnosis, and evil eye was the treatment, at least for me. The treatment for Amalie was more extreme: no more breastmilk. I had essentially failed to eliminate whatever was causing her distress, so now she would have to go on a special formula.

By "special", I mean elemental, expensive, and disgusting. We're talking Nutramigen AA Lipil. No, it's not the Nutramigen you see in the store, and it is not even the Nutramigen that is behind the locked glass at Walgreens. No, the AA stands for Amino Acid. The proteins in this formula are completely broken down into their constituent amino acids, thereby destroying their three-dimensional structure and their ability to wreak havoc in allergic individuals. This formula is high-tech. It is a prescription-only formula. It smells and tastes like (in my opinion) blood. And it costs approximately $50 for a 2.5 day supply. Thank, thank goodness for a few free samples, and for our really good insurance company, which has miraculously paid the lion's share of the cost.

Amalie cried when we fed her this stuff. We ended up having to taper off the breastmilk gradually, mixing it in with the formula in decreasing amounts every day. It was a long, tough road for both of us, and for Jon too. With time, though, Amalie learned to tolerate the formula, and eventually she came to recognize it as "hers".

The blood stopped. Amalie's omnipresent eczema waned. Behaviorally, it was like we had just released her from six-and-a-half months of psychological confinement. The moaning was suddenly replaced by real babbling--syllables and all. Amalie started showing more interest in moving around. I couldn't believe that my breastmilk--the one thing that was supposed to be sustaining baby and making her strong and smart--was essentially poisoning her this whole time.

To this day we are still not sure what foods trigger her allergies. Our learning is of the converse: we introduce foods one at a time to determine what she is NOT allergic to. The pattern is this: add one food, wait a week. If Amalie does not explode, we can add another food. If she has a reaction, we withdraw the food and wait two weeks for Amalie to heal before trying another food.

Two foods in particular have made her sick: a cheaper hypoallergenic formula (the only ingredient the two formulas do not have in common is Splenda, so perhaps that is the culprit?); and corn. However, we have been so slow to introduce new foods that we have as yet to determine whether she is allergic to gluten, dairy, soy, or fish. It is possible that Splenda has been the problem all along, because during my elimination days I drank a lot of Fresca. Who would've thought?

Amalie is looking so much better now. As I will elaborate on in a future post, there are still a couple of concerns about her developmentally. But Amalie is a wonderful child: she is friendly, trusting, smart, and socially precocious. Everything she does makes us hurt with pride. I hope that she will outgrow her allergies so that she does not have to be denied the tasty things that help make childhood so fun.

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