Tuesday, November 23, 2010

New Food Trial Under Way: Beans, Buckwheat and Berries, Oh My!

The latest food trial is under way. As the title of this post has already revealed, we are working with beans, buckwheat and berries. In addition, we have thrown in peas and flax. Peas have provided us with a new margarine, Earth Balance buttery spread (soy-free), as well as a new cheese substitute, Daiya cheese. Both are dairy-free and use pea protein in lieu of soy. Even better is that we can now buy a frozen mac & "cheeze". Amy's brand has several versions, but they now have a gluten-free version that is made with Daiya cheese. They still have one with soy cheese, so you have to be careful to get the correct one. Oh, and there's a hot buckwheat cereal that he is really enjoying. I have only found it at Wegman's so far. Not even Whole Foods carried it. It's Pocono brand Cream of Buckwheat Cereal.

Peas and beans have opened up a larger variety of options for my son. Bob's Red Mill G/F bread mix, which is made with garbanzo and fava flour, is amazing! I would eat it! Actually, I devour the end pieces when the loaf is fresh from the oven. It definitely beats the frozen rice bread, not that I'm complaining about that because it was a bread and was better than none at all.

I made Blueberry Boy Bait coffee cake again over the weekend. My problem is that I want to eat the whole thing myself! It's delicious! It's a recipe from Cybele Pascal's The Allergen-Free Baker's Cookbook. It's hands-down one of my all-time favorite recipes. I use Bob's Red Mill G/F flour instead of the mixture that the author uses. That gives him his garbanzo and fava beans! Sneaky, huh! :-) You can't taste any beans in there. It's amazing! I also just received my first issue of Living Without Magazine, and found a recipe for brownies with black beans! I may have to try that one, too. That would be another sneaky, but delicious way to get those things in him.

The big challenge is how to get a variety of beans into him every day. I have been alternating the beans from day to day and making meals that revolve around the beans. However, he's 12 yrs old. I think that should say it all. He isn't eating enough beans. So, it looks like I will have to start pureeing a variety of beans together and putting them through his feeding tube to make sure he gets enough every day. I really hate having to do that, but that is the one perk of having a g-tube. Yes, I like to look on the bright side of things as much as possible. When he gets tired of a food or just doesn't like a particular food that he's trialing, I can cook it, puree it, and get it in through the feeding tube, thus bypassing his taste buds.

Now, for the bad news. While we had increased his food intake over the summer, thereby decreasing his enteral feedings (elemental formula), he lost weight. He lost 10 lbs over the course of 2 months in the summer. So, we increased his feedings by a box a day. He lost another 5 lbs in a little over a month. He's back up to getting 2 boxes of formula before bedtime. We are trying to avoid the overnight feedings, as they might then throw off the desire to eat in the morning. Hopefully the increased intake of both food and formula will be sufficient to help him gain some of it back. He doesn't need to gain all of it back right away, but at least 1/2 would be nice. He should be due for a growth spurt soon, and his body will need adequate nutrition for that to happen.

Before we found out he had Eosinophilic Esophagitis (EoE), his body was not getting the nutrients it needed to gain weight and grow as he was so inflamed inside that his body wasn't able to properly absorb what it needed. When he stopped eating and went on elemental formula only, his body was getting what it needed, so he gained and grew at an amazing rate as his body caught up to where it should be. He seems to be falling behind a little bit again, but I was not concerned until he lost so much weight (and so quickly). He is turning into a skinny minnie again, but it will work out fine as we can give him what he needs one way or another. We just need to be more careful that he is getting what he needs.

The next scope won't be until sometime in January. CHOP has advised me that they are now waiting 8 weeks before scoping (8 weeks of eating each and every food in the trial every day). They are finding that more patients take longer to react than they initially thought (it can take awhile for the eosinophils to build up in the esophagus), so the 8 weeks should be sufficient. In this particular food trial, I'm breaking from the usual protocol and throwing all of the foods together because he takes 4 weeks to show a reaction anyway, so if he reacts, I'll just remove the most likely culprit and see if he gets better. If not, I'll remove another. That's backwards, but these are not the most likely triggers for him. He was fine with the bread, margarine and "cheeze" over the summer when we were taking a break, so it's unlikely that he'll react to the beans and peas. The berries, on the other hand, are the ones I would pull first if he has a problem. Hopefully this food trial will work out well.

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