Coming Down from Anaphylaxis

S recovering

My allergy boy recovering in the ER on Sunday after anaphylaxis.

This week has been a bit of a haze. We’ve been recovering from my allergy boy’s anaphylaxis last Sunday. Throw in an appointment with the allergist, plus a trip to the ER with my 6 year old daughter with a broken finger and I’ve had just about all I can take of hospitals and doctors for a while.

My allergy boy slept in our room for the two nights following the reaction. It was almost like he was a newborn again. Every time I woke up I checked to make sure he was still breathing. Even last night I couldn’t go to bed without checking on him. I know he’s fine and I know that the reaction has passed, but I guess I’m not feeling entirely rational about the whole thing yet. I want to spoil him rotten and give him absolutely everything he wants. I want to hug him and squeeze him all the time. The memories of Sunday night will haunt me for a while, I guess. I still get teary thinking about it.

I had a long talk with the allergist on Thursday. Here are some updates:

My allergy boy seems to be recovered. He’s had a lot of headaches this week – which is really unusual for him. I can only assume they are related to the allergic reaction. I don’t know if a headache is associated with any of the drugs he had but I can’t image that would still be affecting him at this point. I’d guess that it’s more related to anxiety. Otherwise, all is well. His cheeks were flushed for a few days but other than that, there seem to be no other symptoms. The allergist said we could stop the antihistamines.

The allergist agrees with the two ER doctors who said that the appearance of hives a few hours later was not a biphasic reaction. They all just think it was (a) the first dose of Benadryl wearing off and (b) the allergy running its course.

Our allergist also agrees that these hives were not dangerous. They looked awful and they were terribly uncomfortable but under the circumstances, neither the two ER doctors nor our allergist think that my allergy boy was in danger at that point. Now, let me be clear, these hives would absolutely be an emergency if we were not at the hospital and would absolutely warrant a dose of epinephrine. Hives can be a sign of a systemic reaction and need immediate medical attention. BUT in our situation, we were in the hospital, my allergy boy’s vital signs were being constantly monitored, and since his vitals were all good, they do not believe he was in danger because of the hives alone; thus the hesitation for the second dose of epinephrine. It is possible that the hives may have escalated to something that was an emergency. Our allergist says it’s hard to say. He thinks that it was completely reasonable for the ER doctor to have held off on the second dose. He also thinks it was okay to give the second dose when we did.

Personally, I don’t regret for a second advocating for that second dose. Knowing what I know now, I would do the same thing again.

Our allergist asked us about the circumstances surrounding the accidental ingestion and asked us to think about what we might do differently in the future. Of course, this has been top of mind ever since. Mr. FamilyNature and I have already spent a tonne of time talking about being more careful. Since our allergy boy grew out of his dairy, egg and banana allergies last year, we have let our guards down just a little. Mr. FN says we’ve been scared straight. It’s not that we’ve been careless; it’s just that we haven’t been as vigilant as we could have been. Friends, don’t be surprised if we are more cautious about this in the future. I know you’ll all be on board without a second’s hesitation.

Our allergist also talked to my boy about the anxiety after the reaction. I’m really glad that he did this. He talked to my boy about not being afraid of the needle – even though it hurts a lot. He explained, very gently and in an age appropriate way, that we cannot be afraid of needles or autoinjectors such that it would prevent us from using them. They hurt, and it sucks getting a needle, but the needle saved his life.

We’re going to have blood tests done later in the year for the six tree nuts he’s allergic to. My allergy boy had these blood tests done for his dairy, egg, and banana allergies. In the few years before he grew out of those allergies we watched his IgE levels fall. We don’t expect the nut IgE levels to fall – it’s unlikely that he will grow out of the tree nut allergies – but we’d like to have a baseline. The only reason we haven’t done the tree nut ones before is because the blood tests are not covered by OHIP. Mr. FN and I are both self-employed, so we don’t have medical insurance. The blood tests are about $45 per allergen. We were focused on the dairy, egg, and banana allergies at first, because we knew my allergy boy was much more likely to grow out of those ones and so monitoring those made the most sense.

To be honest, I’m not even sure why we’re doing the CAP RAST tests for the tree nuts. We know my allergy boy is allergic to them and we know the allergy is severe. Regardless of the results of the blood test, the diagnosis and plan for my allergy boy will not change. More than anything, I’m curious about the results. Considering his skin tests, his history and this most recent reaction, I think it’s pretty clear that he is dangerously allergic to tree nuts.

Here are what my allergy boy’s latest skin tests for tree nuts looked like (June 2014):

before and after

From left to right: +, -, brazil nut, cashew, hazelnut, pecan, pistachio, and walnut.

In the next week, we’ll be preparing for back to school. I recently got my allergy boy a new MedicAlert bracelet. Next I have to get updated allergy forms and emergency plans put together and signed by our allergist. I’ll also have a new place mat made for him for the lunchroom. (See the allergy place mat I use for my boy and download a free copy here.)

Aside from that, we’re trying to move on and enjoy the last couple of weeks of summer.

2 thoughts on “Coming Down from Anaphylaxis

  1. Gina

    I am so glad your allergy boy is doing better! (I read the earlier post as well!) Hives are so complicated; personally, I am usually covered in hives 4-6 hours after anaphylaxis, and they don’t seem to affect whether or not I have a biphasic reaction. -However- I’m in my 20’s, and I’ve had life-threatening allergies my entire life. I’m pretty good at knowing what is a severe reaction, and what is just uncomfortable.
    I’m really relieved you pushed for the 2nd dose of epi. I know my reactions when I was younger were way more unpredictable, and honestly? As sure as I was about managing my allergies as a kid, in hindsight I know so much more now.

    (I hope I don’t sound too know-it-all-y! I’m just pleased everything turned out alright)

  2. Pingback: Allergy Boy 1, Walnuts 0 | Family Nature