Anyway, to make matters even more interesting, remember how she has a history of mild reactions to rice? (increased vomiting with rice cereal in her milk as a newborn, increased vomiting when I went on an elimination diet that was heavy in rice to try and help aforementioned vomiting & reflux, reaction to rice being on her skin, mild reaction to rice on scratch testing) As it turns out, the gluten free versions of the foods she likes (i.e. crackers, crunchy things, animal crackers, etc.) are made of primarily rice ingredients. I had no intentions of avoiding rice because we've never really had a solid confirmation of an allergy by any of the allergy tests. (Not that any of the allergies have been confirmed by tests...) so I got her some gluten free animal crackers. I was relieved that she liked them because I wanted her to still be eating something. And because they were expensive. :/
So a day or two into eating the animal crackers, she had HORRIBLE gas and...um...changes to her stools. In other words, the rice-based animal crackers did not go well. We bought some other wheat-free multigrain crackers at Costco and it's a good thing that a couple of us like them because Raya does not. She's tried them 2 or 3 times now. She'll kind of lick it, take a little nibble, make a yuck face, and say, "I don't like this." I'm not sure if it's the taste or the texture that's a problem for her but either way, she's tried them and she honestly doesn't like them. (In other words, I don't believe her refusal to eat them is a behavioral or control issue, she just doesn't like them.)
Who the heck is allergic to rice?!? Have you ever tried to find snack-type foods like Wheat Thin-ish crackers and Nutrigrain bars that do not contain wheat OR rice? My attempts thus far have been unsuccessful. It would be easy enough if I was trying to find gluten free/rice free food for one of my kids that actually eats a wide variety of foods and consistently likes the same things from one day to the next. I stopped by a store this evening that sells only gluten free foods and baking ingredients and talked to the guy behind the counter. I explained the situation and as soon as I said the part about needing things that also didn't have rice, his face got long and he said, "Oh. Uh, I'm not sure that there's going to be anything." He looked at 2-3 different things but they weren't things that Raya would have been the least bit interested in. One of them was cracker-ish things made out of parmesan cheese and we're not giving her dairy anymore either so those were out. (plus they were $5.79 for like 10 crackers. ouch.)
Tonight we had pancakes for dinner. While I was cooking dinner, I told the kids to get the living room picked up and get the table ready for dinner. Raya yelled, "I NOT HUMBWEE!!" (I'm not hungry) and I really didn't expect her to be since she had gotten a bolus feed about an hour before that. When she found out we were eating pancakes though, she got in her chair and took one off of the pile. (yes, we had breakfast for dinner) I was in the kitchen so I didn't see her take it and she had a mouthful of pancake before anybody noticed. I had forgotten that she likes them. Donny took the pancake away as nicely as possible but she just burst into tears. I offered her everything we have that she could/would eat but when you want a pancake, being offered an ice cube just isn't appealing.
For the first few minutes of dinner, she sat in her chair and pouted. Then while I wasn't looking, she dug out a finger-full of margarine and ate that. She cried and begged and pleaded with us to give her a pancake and dang it, I couldn't not give her some. I felt terrible! It feels awful as a parent to spend 2+ years TRYING to get your child to eat and then having to keep taking foods away from them. Talk about sending mixed signals! I let her eat a few bites and then told her she couldn't have anymore or it would make her tummy sick. The waterworks started up again. I hurried and wolfed down the rest of my dinner so I could leave the table and do something with her to distract her from the pancakes but she just screamed at me and kept crying that she wanted pancakes. Somehow I convinced her that she would like an ice cube. It's kind of a comfort food for her (if ice cubes can be classified as food). She sat in her high chair that she's definitely too big for these days and nibbled on an ice cube with her face still splotchy and red from crying so much.
|wow, her hair looks gray in this picture. weird.|
When I talked to the guy at the gluten free store, he said that my best bet for finding wheat free AND rice free food is to learn to cook it myself. Eek. In light of the pancake fiasco this evening, I think pancakes will be a good place to start. In order for it to be effective, I'll probably need to avoid cross-contamination by having a mixing bowl, spoon, and pan that are just for Raya's food. 'Twill be interesting, for sure. He also told me that if I ever find out about any foods that interest us, we can let him know and he'll look into ordering things for us. I thought that was nice. (suggestions from anyone that has experience with wheat free AND rice free diets are welcome!) This should definitely make things interesting.
It's sad that so far, every time Raya has found a food that she really likes and starts eating it consistently, we end up having to take it away. First the sour cream, then the peanut butter, and now wheat & rice. (actually, she's never liked rice but I digress...) This week I have really developed a whole new sympathy for people with eosinophilic disorders (and their parents!). Kids with EOS do food trials where they eat something for about 6 weeks and then have an endoscopy with biopsies to see if their body is reacting to the food. If it is, then they have to stop eating that food. I feel like the meanest mom ever right now, both because I have to take another food away (and wheat has a HUGE impact on her food variety) and because I let her have some when she's halfway through her 2 weeks of no wheat. So much for that, huh?
I'm trying to not let my thought train run away with me but every time we hit a road block like this (because let's face it, a wheat allergy AND a rice allergy AND a dairy allergy/intolerance AND a peanut allergy is a pretty big road block) it's that much harder for me to imagine her ever getting off of the feeding tube. Right now, I'm feeling more grateful that we're taking a break from feeding therapy. Adding in food allergies when we don't yet have "safe foods" that she actually likes would just complicate therapy so much more. We will definitely get to a point when we can start doing it again but for now, we just need to figure things out first. Like what she CAN and WILL eat. For now, we're sticking to corn-based products. But not actual corn. She doesn't like it. Corn chips, corn Chex, Kix, and whatever other crunchy corn products we can find that she'll eat is what we're feeding her right now. (and don't bother lecturing me about the evils of corn/GMOs/Monsanto. right now, corn is all we've got so it's not a good time for that sort of propaganda.) It's a good thing I've made peace with that darn little feeding tube because it's days like today when I feel like it will be with us for a long time to come.