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Educational visit to the allergist

The food allergy saga continues. Since Raya FINALLY tested positive for a few food allergies in September, we've done pretty well with avoidance of those foods. There have been a few exceptions when we've either decided that the risk of a reaction was low enough or just didn't want to break her heart so we let her have a small amount of something. Some of those exposures have been fine but others have blown up in our faces. To date, she does not have any anaphylactic allergies, but she has tested positive for peanuts, tree nuts and shellfish which could all potentially become anaphylactic for her.

(backing up...) Ok, so immunology is something that I'm still (and probably forever will be) trying to wrap my mind around. I've read textbooks, written essays, answered test questions, and researched on the internet but there's a lot to learn and understand. There are some tricky aspects to food allergies. For one thing, a food allergy can have very different effects on different people. A particular food might make one person vomit and someone else break out in hives. Reactions vary and severity of reactions varies. Then there's the IgE mediated vs non-IgE mediated reactions. This is something I've just been learning about in the past month. After our visit to the allergist this morning, we've clarified that Raya does seem to have both IgE mediated allergic reactions AND non-IgE mediated reactions to some foods. With others, there is either an IgE reaction OR a non-IgE reaction.

First round of skin testing, Feb 2011. Even the positive control was negative. Fail.
(backing up again...) IgE mediated allergies are the ones that scratch testing and blood tests (RAST) can identify, although neither one is completely accurate. We did at least 2 rounds of scratch testing (maybe 3) before we finally came up with some mild positives to wheat, rice, milk, peanuts, tree nuts, shellfish, chicken, and oats. Why did it take multiple attempts and 2 yrs 9 months to finally confirm that she was allergic to those things even though we knew long before that that she had reactions to some of them? I think it was due in part to the complete lack of exposure for a very long time. Knowing what I've learned recently, some of the reactions she has are non-IgE reactions, aka food protein intolerances. What's the difference? So far, this is what we have seen:

Raya eats crunchy peanut butter. Raya vomits 15 minutes later. (IgE mediated food allergy)

Raya's big brother Cole eats a banana. 10 minutes later, hives appear around his mouth and a couple minutes later he's puking his guts out. (IgE mediated food allergy and/or oral allergy syndrome (OAS))

Mommy smears cashew butter on Cole's cheek. 10 minutes later, the whole cheek has broken out in hives. (IgE mediated allergy)

Raya finds and eats a peanut M&M. Raya's mom sucks as much of the peanut M&M out of her G tube as possible. Raya's throat gets phlegmmy (is that a word??) and she clears her throat a lot for the next half hour. (IgE mediated allergy)

Raya eats wheat. Between a few hours and a couple of days later, Raya gets dotty rash around her mouth & nose, has diarrhea, and gets massive diaper rash. (non-IgE mediated reaction/protein intolerance)

Raya gets into cream cheese frosting before preschool. Raya gasses out her preschool class the whole 2 1/2 hours and poops 3 times in one day as opposed to the once every 1-2 day norm. Raya's poor little bum gets a rash and looks like it's been burned. (non-IgE mediated reaction/protein intolerance)

Tiny baby Raya drinks a bottle of breastmilk with rice cereal blended in for added calories. 1-2 hours later, Raya covers herself and her mother in vomit and continues to dry heave for a bit while at a cousin's wedding reception. (awesomeness, right?) (non-IgE mediated reaction/protein intolerance)

Raya smears pureed black beans & rice all over herself. Mommy cleans it off and sees that everywhere that the rice touched, Raya's skin is bright red. (?? but probably IgE mediated reaction ??)

So yeah, there's a difference and I'm still learning which symptoms indicate which type of reaction. Realizing that there's a difference between IgE and non-IgE reactions helped me to make sense of why it took us so long to get positive allergy test results for rice and milk, even though we knew from the early months that she had a problem with both of those.

We had a good visit with the allergist today. Well, except for the part about Raya crying through pretty much the whole appointment. Poor girl just gets stressed out at doctor appointments.
We have the BEST allergists. They are both wonderful to work with, both for me and for the kids. It's not uncommon to have a long wait when we go there but the last couple of visits have been much quicker and they've added a 3rd doctor to help with the patient load. Anyway, we had an early appointment this morning so we had a little more time to discuss things. Probably at the expense of everyone else on his schedule today, but that shoe has been on the other foot plenty of times.

We talked about the recent accidental food exposures (which were not so accidental on Raya's part) and the reactions she had to them. We discussed the differences between IgE and non-IgE reactions and agreed that she has some of both.

The theme of her life has been trial and error, and that will not be changing anytime soon. He said that they are seeing more and more kids with multiple types of allergies, as well as other similar conditions, and that figuring out what is and is not okay for them to eat is a process of trial and error. The potentially serious/fatal food allergens like peanuts, tree nuts, and shellfish are things we will avoid completely and just assume that she will always have those allergies. The foods that have less serious potential reactions are things that we will have to use judgement and more or less experiment with to see how they affect her. She may be able to tolerate small amounts of certain things, and she may eventually grow out of some of these allergies & intolerances. For now though, we are doing our best to avoid them completely. We will also not be adding any new foods until after we see GI again and possibly do some testing. Right now, she's eating quinoa and quinoa-based foods, corn/corn-based foods, peaches, applesauce, white potato, egg, black & pinto beans, and corn pasta w/spaghetti sauce. There are still question marks about solid food in general and possibly about quinoa, but for now we'll leave things as they are. At least until we see her GI doctor next week. I'm anticipating that being a busy appointment because we have a lot to talk about.

Comments

  1. I hate non-IgE allergies. IgE is pretty clear -- eat, react, move on, avoid. Non-IgE -- eat, react, figure out if it was a reaction or just one of a bazillion other options, repeat, repeat, repeat, get answer, avoid.

    I also wanted to share that I'm nominating you for a Liebster Award. All of the info is posted here - http://www.adventureswithjude.com/2013/01/the-liebster-award.html

    ReplyDelete

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