Another piece of the puzzle

January was a month of discovery for us in regards to Jamie’s health issues.

The endoscopy and colonoscopy in early January revealed eosiniphils in his esophagus, a type of cell that indicates the presence of allergic reactions. Oddly, there was no inflammation in either his colon or his esophagus. The extent of the eosinophils puts him right on the border between reflux and eosinophilic esophagitis, which is much more serious.

He is now taking Prevacid daily to control the reflux. This is the same medication that he was on when he was 2 months old. We didn’t think it really did much to help back then, but of course he had undiagnosed food allergies in addition to colic, so any improvement due to the medication was probably being masked by his other problems. This time around, it seems to be helping a great deal.

Next, we went to see an allergist. She talked to us extensively about his symptoms, then performed a skin scratch test (which was SO much fun, let me tell you — try keeping a naked unhappy toddler lying still on his stomach for 20 minutes so he doesn’t disturb the itchy itchy allergens on his back). The results, which have up to a 50% false positive rate, indicate that he is likely allergic to eggs, milk, and wheat.

I think that we could fairly easily avoid eggs and milk, but the wheat thing is going to be really difficult. Wheat, or byproducts thereof, is in EVERYTHING. Just think: bread, rolls, tortillas, bagels, muffins, pancakes, crackers, pretzels, pizza, pasta, cereal, soy sauce, MSG, cookies, cake, breading on baked or fried items, …. the list goes on and on.

Luckily he is likely NOT allergic to oats, corn, rice, soy, dust, mold, or cats. I’m very pleased that he handles soy OK. We have thought that he was sensitive to it since May of last year; and perhaps he was, but has outgrown it. Soy is another ingredient that’s in absolutely everything.

The allergist recommended we see a nutritionist to help us formulate a diet plan for Jamie, since we were at a loss for what we could safely feed him and still be sure he gets all the nutrients he needs. When the nutritionist weighed him, it seemed that he had lost a little bit of weight over the past couple of weeks. Of course every doctor’s scale is different, but it raised some alarm bells. She wanted us to get more calories into him each day (a baby his age and size needs about 1200) in order to keep his weight up and maintain proper nutrition. So we’ve thickened his formula by 50% and we are trying at every opportunity to stuff food into him.

He is rather resistant to this idea, though. I suppose a lifetime of food equals pain means that it’s going to take some time for him to learn to like food. We have an enormously difficult time getting him to eat much of anything at mealtimes or as snacks. Occasionally he’ll seem hungry and eat a whole serving of oatmeal or fruit or veggie puree, but usually it’s a struggle to get him to eat more than 2 or 3 bites.

It turns out that he likes bananas (and isn’t acutely reacting to them like he did last summer) but hates mashed potatoes. We were counting on potatoes to be a star of his diet, since they are nutrient-rich, starchy, and full of calories, especially with the soy margarine we added to them. We’re going to keep offering them to him, though, in hopes that he’ll change his mind.

And now, actually, he seems to be off his banana kick too. So we keep trying to find things that he likes.

Next week, he goes back to the allergist for more extensive testing. They’ll put actual food samples on his back, and seal it up with a bandage. He keeps it on for two days, after which they check daily to see how he’s reacted. This is supposedly a more accurate test.

The good news is, he does not seem to be in nearly as much pain anymore. He still occasionally has gas or is just generally fussy in an I-don’t-feel-well kind of way, but it’s much better than it used to be. And he sleeps better as well. He still wakes up at least twice per night, usually three times, and wants formula, but he’s generally easy to get back to sleep. It is probably helping that we’ve put a mattress on the floor of his room and are letting him “put himself to sleep” there, with one of us lying next to him. He seems to prefer that to being held and rocked. Once he’s asleep we transfer him to the crib, but are considering alternative options to that now.

5 Comments

  1. Katy

    Thanks! 🙂 It’s definitely getting easier, just very slowly. And of course, other challenges arise as some of the ones we’ve been dealing with decrease. Parenthood is HARD!!!!

  2. Bonnie

    A note about scale accuracy: According to the doctor’s scale, Josephine only gained about 8 ounces between her 12 and 15 month appointments. I didn’t believe it (I carry her, for heaven’s sake), so the next time I dropped by the vet, I asked to put her on their scale. The vet’s scale said something much closer to what I believed, 1.5 pounds more! Her doctor never expressed concern about her weight, so either she didn’t look at it (unlikely) or she sees that kind of variation a lot. It still bugs me, though, so I’m going to mention it when we next go in. Anyway, just saying to not worry too much about the weight difference.

  3. Peter

    Find a traditional Chinese restaurant in your neighborhood (if you can). Traditional Chinese food has almost no wheat in it.
    Our neighbors are both wheat-sensitive and have all kinds of baking recipes (rice & Barley flour brownies?) if you’re interested.

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