When people find out about Eva’s allergies these days, there are two questions that come up over and over. The first is a weird one: “Have you tried giving her peanut butter?” I’m not sure why this is the knee jerk reaction but it pops up a lot and then people either immediately answer for themselves or we have to fumble and not be rude about the fact that they missed the part where that would kill her.
The second question has to do with Eva getting treatment for her food allergies. It comes up either in the vague “Is there anything they can do?” or the more specific “Are you going to try the therapy where she gets a little at a time until she isn’t allergic?” The more specific question refers to oral immunotherapy, a treatment that has gotten more attention in the media lately since so many kids have developed food allergies. The general idea is that a patient consumes a little bit of the allergen at a time under the supervision of a physician and the exposure actually decreases the body’s sensitivity to that trigger.
And the answer to that question is “no”.
We really wanted Eva to do Oral Immunotherapy (OIT), even though we heard that you have to be really dedicated and it’s kind of a scary process. The idea of her eating little bits of peanut in a hospital setting is still preferable to her accidentally eating bits of peanut in a crowded restaurant or on a field trip or at a friend’s house where she might not be able to get help very quickly. The idea of her being able to eat a bit of peanut and not go into anaphylaxis? That’s the dream.
Reality check: OIT isn’t easy for most patients. It requires months of methodically increasing the dose and being faithful about taking that exact amount. Allergic reactions are common, although the therapy is designed to only raise the smallest reaction possible, and anaphylaxis happens even under those controlled conditions. A couple of years ago a three-year-old boy died during OIT and sent allergy parents everywhere into a panic. Even without anaphylaxis, it’s common for people going through OIT to experience vomiting and other gastrointestinal problems, and it’s a known irritant of chronic immune conditions like eczema.
That being said, obviously having even a remote chance of Eva being less likely to die from eating is probably worth some risk. We even switched allergists to make sure we were seeing someone who offers OIT. It was our fourth switch which makes life frustrating because tests and records don’t transfer as easily as I’d like them too, but luckily the allergist we switched to is our favorite so far. Unluckily, Eva isn’t a candidate for OIT for three reasons. Here they are:
1 /// Eva is too allergic.
This is the biggest reason and, although it’s frustrating, I’m really glad her allergist was honest about the fact that he didn’t think it was a good idea for her to try OIT. Although the therapy is obviously intended for people with allergies, the ideal range is someone who has a higher than normal allergy score but not someone who has an insanely high score because the higher your score is, the more likely you are to have a catastrophic reaction during OIT.
What am I talking about when I say allergy score? It’s the scores we get from her allergy testing – more specifically the results from her blood tests. Testing blood can give doctors an Immunoglobulin (IgE) reading. Those are the antibodies that we have in our blood to protect us from harmful things like bacteria/viruses and it’s normal to have small amounts that react to allergens. However, when you have too many that means that your body is more likely to overreact to the allergen and cause reactions that range from hives to anaphylaxis.
Eva has gotten blood tests every year since she was about 18 months old. Tracking her numbers is an emotional roller coaster because some have improved and some that we thought couldn’t get worse keep moving in the wrong direction (meaning her body has even more IgE antibodies than it used to). The test results give us her score in bold next to the normal (safe) range and you can see why it’s disheartening:
Some of Eva’s allergies score better than others. Peanut, the big one that we talk about all the time, is actually not as scary as her pistachio and cashew allergy. However, that’s only because those are so scary. She’s plenty allergic to peanut and out of the running for testing. Plus, even if that score was lower than it is…
2 /// Eva has too many allergies.
The really annoying thing about nuts is that they’re often found all together. Cross-contamination is a huge problem for us because once one of the bad allergens is in the mix (or the bag, box, room, factory), the whole situation is officially dangers. So even if we finished a round of OIT (which takes months) for one allergen, we’d have to start over again with another and go on and on down the list until she’d done them all. That would mean years of making her just a little bit sick in order to make her better and there hasn’t been a lot of research on how that affects someone, especially a child.
Plus, the whole OIT thing is new enough that they mainly do the really common allergens like peanut but there hasn’t been a lot of work with other nuts or things like sunflower (another of her major allergens) so her allergist wasn’t totally comfortable with that idea.
And finally…
3 /// It isn’t a miracle cure.
Even if Eva’s scores improve (fingers crossed) and more OIT research is completed (fingers crossed) and Eva actually starts treatment (fingers crossed), finishing the treatment won’t “fix” her. She’ll still be allergic and she’d have to faithfully take the exact same amount of each of her treated allergens every day (preferably at the same time of day) to keep up her lowered response state or she’d have to start the treatment over again. I guess her high level of allergy makes it even more important that she doesn’t mess up.
That’s a tough sell. If we got there, I could help Eva manage that until adulthood but after a while she’d be on her own and it would be her responsibility to do that for the rest of her life. As someone who had about a 94% success rate remembering to take my birth control in college (when I really really really really didn’t want a baby), I completely understand being 20 or 24 or 34 or whatever and having one of those days where you just don’t remember. The difference is that missing my pill didn’t kill me.
Anyway, that’s the long answer to why Eva’s food allergies aren’t being treated by anyone and also why she exists with Epi pens and medical bracelets attached to her at all times. I’m just grateful that there is a lot of support and awareness out there now for food allergies so that her life should be a little bit easier than it could have been, even if she has to be careful forever. And hopefully…someday…
