The unwanted theme of my life for the last 3 years has been patience. I had always thought of patience as just being one thing. You're either patient or you're not. I've learned, however, that there are countless forms of patience. In some situations you're only required to be patient for a few minutes, like when you're sitting in a doctor's office trying to keep yourself from getting angry about having to wait for a long time to be seen. In the grand scheme of things, it's over with pretty quickly. Other things require more long term patience, like waiting weeks to get test results (or waiting months for schedulers to coordinate a surgery/endoscopy...nope, not bitter about that at all...:) Then there are things that take YEARS of being patient hour after hour, day after day, week after week, month after month. Things like wondering if your child will ever be diagnosed with something that will explain all of the other diagnoses or knowing that you may never be free of dealing with insurance and home health company iterates month after month. Diagnosing possible food allergies has been one of those things that has required long term patience. Lots of it.
We've suspected food allergies since she was only a couple weeks old. When she was a month old and still had uncontrolled reflux even on Prevacid, I out myself on an elimination diet to remove all of the most common food allergens from my diet, and subsequently from hers. It didn't help, but rice was the only grain I was eating and we now know that she's allergic to it. When she first got the feeding tube, I vaguely remember discussing with her GI that she could possibly have an EGID (eosinophilic gastrointestinal disorder/disease). At the time, it wouldn't have done any good to test for it because she had already been switched to the elemental formula that she would have to be on if she did have an EGID. I specifically remember her doctor saying, ”It would be pointless to scope her right now because we're already treating her as if she has it so it probably wouldn't show up anyway.”
As things have improved and she had started eating small amounts of food without any major reactions, I assumed we had been wrong about her having food allergies or an eosinophilic disease. Then she started having small reactions here and there. We did allergy skin testing and everything was negative, even the positive histamine control. One of her meds had thrown off the results, but we couldn't take her off of it to repeat the testing so we had to wait until she came off of it. For about 18 months we were left to speculate and wonder before we could finally do the testing again. By that time we could see definite reactions to milk and peanuts and iffy possible reactions to rice.
When the tests were repeated this September, they were very mildly positive for several things. Low and behold, when we eliminated those things, we saw improvements in things that we hadn't even attributed to food allergies, and things we had been told were not related to food allergies, which I'll get to in a minute.
So now here we are again, wondering if in addition to food allergies, she could possibly have an EGID. The endoscopy she was supposed to have this week (during the surgery that never got scheduled) was going to show us whether or not she has eosinophils in her digestive tract but since it didn't happen, it will be goodness knows how long before we get to do it.
Raya had a follow-up with the allergist this morning because we've seem it confirmed by elimination and reactions that she's allergic to the foods she tested positive for and to talk about where to go from here. I filled him in on the types of reactions she's had and he explained to me why her reactions are more severe now that she's been off of her allergens for almost 2 months. Something to the effect of now that her body isn't at a chronic level of allergic reaction, when she does eat something she's allergic to, her body has an acute reaction to it rather than a slow, chronic state of reaction like she was in before. Totally makes sense. We went over the foods that she's currently eating (marshmallows, Puffcorn, Fritos, whole pinto or black beans, banana, corn, potato, buckwheat pancakes, and a little bit of apple) and based on those things, he gave me 5 more foods that she can try. He said that if she does okay with those foods, then he'll give us more and if not, we'll just take it as it comes.
The new foods are pears, sweet potato, cooked carrots, and pork loin. He also suggested quinoa, which we've tried once or twice before and she ate it okay. He also agreed that it was best to avoid gluten entirely since we know that she's allergic to wheat but we don't know if she's also allergic to gluten, which is in more grains than just wheat. We'll follow up with him again in January and hopefully by then she will have had her EGD and maybe we'll have more information from the biopsies. I left the allergist's office feeling SO much better than last time we left there because I feel like we actually have a plan now. The NP that we saw the last 2 times had told me, "Well, her reactions were all really low, but if you want to you can take her off wheat for a couple weeks and see what happens. Come back in 3 months for a follow-up." And that was it. I left feeling like I was totally on my own with it and I don't like feeling like that about Raya's medical care. This visit was MUCH better and made me glad that I asked to only have her put on the allergist's schedule from now on instead of the NP.
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