Conducting Sad Experiments on Our Two-Year-Old
On the pain of food trials, by the author of "Experimenting With Babies"
Posted Aug 28, 2014
When I began writing Experimenting With Babies–a book of science projects parents can perform on their own kids–my youngest son, Benjamin, was still in my wife's belly, kicking around with the seemingly limitless energy that we have come to associate with him. The timing worked out nicely; I got to test-drive a number of the experiments on him as I wrote about them.
At the time I began working on an initial draft, I don't think I could have imagined that one day, the experiments I would have to perform on my own baby would not be fun and illuminating, like the ones in the book, but rather very sad and frustrating.
Shortly before his first birthday, Ben was diagnosed with an eosinophilic disorder, a type of overreaction of the immune system that's kind of like a food allergy, but more insidious.
With food allergies, you eat a food you're allergic to and typically have an immediate or near-immediate reaction–maybe you break into hives, or your tongue swells up, or you experience stomach cramps. Those are all pretty good indicators that you should avoid that food.
With Ben's disorder, it's not that simple. The only way to know with confidence which foods are problematic is to eliminate everything, then slowly introduce a handful of new foods and biopsy the tissue in his esophagus and stomach for signs of inflammation.
Over the past two years, we've done several of these food trials. Typically, we choose three to five foods and introduce them one by one, a few weeks apart. Then he gets an endoscopy, during which the surgeon performs the biopsy, and we find out whether his immune system is reacting to one or more of the foods.
Ben, who'll be three in a couple of months, has had seven endoscopies: one that led to the diagnosis of his disorder and six others related to food trials. He's been fortunate; all but one of the six have come back "clean," meaning his eosinophil levels are normal and he can safely eat all of the foods in the previous trial. However, most of his safe foods are fruits and vegetables, which don't provide a nutritionally complete diet, so he gets the bulk of his nutrition from a special amino acid-based formula. Some kids never get a clean scope and have to subsist on the formula, and many of them end up tube-fed.
The unfortunate experiment my wife and I must perform on Ben is related to selecting new foods to trial.
We have to choose foods that have a low allergic potential. So, foods like milk and eggs are out. And because during the trial each food will consitute a regular part of his diet, we have to choose foods that are both versatile (meaning we can include them in a variety of recipes) and appetizing. So, foods like broccoli and kale–although they have a low allergic potential–are also out, because, well, would you want to eat broccoli or kale every day for several months? And if so, do you know any two-year-old who shares your taste?
Thus, we find ourselves in the position of having to select foods that have maximum appeal, so that he will like them and eat them regularly, knowing full well that at the end of the trial, we may have to say, "You know that food that you really enjoy? Well, you can't have it anymore."
Yesterday, we began a trial of oats. My wife made a biscuit using oat flour blended with potato starch and tapioca flour, two other foods Ben has successfully trialed. And when he bit into it at dinner and said that he liked it, my wife began to cry.
They were happy tears, because she was able to give him a new food for the first time in six months, but I think they were also tinged with sadness or maybe fear–fear that if his next scope doesn't come back clear, we may have to take this food he enjoys out of his diet.
And we're beginning to see it take a toll on him. He gets easily bored with food, because there's so little variety. And he gets deflated when he sees the rest of us eating foods that he knows he can't have because they would make him sick.
Despite those difficulties, however, Ben is an exceptionally joyful child. He's so grateful for the foods he does get to eat. He's full of life. He loves hamming it up and making us laugh. He's active, talkative, and inquisitive. He admires his older brother so much. He has frequent affectionate "conversations" with Baby Sister, who's due in December. In fact, just by looking at him, you wouldn't know that there's anything wrong with him.
I love Ben so much, and I love watching him grow. Conducting the experiments from my book on him was such a fun bonding experience, and it gave me a new appreciation for what a magnificent little guy he is.
I just wish our sad experiments could be over.