The stress of not knowing

My five year old son has a peanut allergy. That is known. And we didn’t find out through a scary near death experience like so many families. Actually, I suspected a milk allergy. With years of acid reflux, night-time coughs/congestion, and occasional asthma like symptoms, I took him to an allergist for skin testing at age 3. I’d had him tested by blood test as a baby during a particularly bad phase where he was vomiting every single night around midnight. It came back negative, and a two week challenge where we removed all dairy showed no change. Still, there’s a family history of dairy allergy (actual immune response, not just lactose intolerance). So not out of the realm of possibility.

I was surprised to see no reaction to dairy on the skin testing. Instead, it showed a fairly strong reaction to peanuts and lesser reactions to soy and oak. Nothing else. What? As a baby, he drank soy formula exclusively for two weeks and we saw zero change in symptoms. As a family, we’ve always had peanut butter around and I personally eat a lot of nuts. I love them. How had we not experienced an episode? Anyhow, we were issued epi-pens and instruction to avoid all tree nuts and soy. He retested a few months ago with the same results, only a bit stronger of a reaction to peanut than before.

In the past few years, we’ve had a handful of strange allergic reactions – but nothing of the typical anaphylactic variety and nothing we can definitively say was the result of a food reaction. Three times, he’s had a single eye puffed up and nearly swollen shut. This has always happened at preschool, but at two different preschools. In both cases, he got a bit lethargic – but no other symptoms. A dose of Benadryl brought him back to normal energy levels, and the swelling reduced by the next day. But if this was a food reaction, why not both eyes, the whole face, tongue, etc.?

And we’ve had 4 cases where B became extremely sleepy, zoned out and non-responsive to varying degrees (glassy eyed and won’t respond to verbal communication), followed by vomiting until there was nothing left in his stomach. There were no other cold or flu symptoms present. One time, I know for certain he consumed a peanut (it was before we knew about the allergy) inside a miniature Mr. Goodbar. I remember it, because it was the one thing he’d eaten that day that was not normal. But I chalked it up to food poisoning or short lived stomach bug. The other times were following a dinner out at the Cheesecake Factory (peanut oil?), and twice following fresh bakery cookies that don’t have nuts as an ingredient.

I’m stumped by all this, because he doesn’t seem super sensitive. He eats store bought baked goods that contain small amounts of soy and traces of nuts with no reaction whatsoever. My other son and I eat peanut butter regularly and B’s food is routinely prepared near nuts. While I’m careful to not re-use knives or cutting boards that have touched nuts and my other son and I both wash hands after handling nut products, we are not that careful.

I want to be able to tell caregivers what to watch out for and what to expect. I provide the epipen, but none of the reactions so far are the type where it would have been needed. Do I need to be more diligent and insist on a completely nut free classroom? Do I need to restrict him from eating any baked good not prepared by me? I don’t want to overreact, but at the same time, I understand that one can have a severe anaphylactic reaction even if they never have before. That’s scary.

I really hate not knowing.

 

 

 

 

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