Food Allergies & Anaphylaxis: When the Medical Response Is a Mystery (part 2 of 3)

This blog post is part 2 of a 3-part series. Read part 1 and part 3.

Since I first wrote about my son’s first anaphylactic reaction (and the doctor’s mysterious reaction to his reaction), I’ve done a lot of following up. Because as helpless as I felt when all this went down, the truth is, it was up to me if I wanted to do something about it or let it slide.

I decided to do something about it. Because, hey, I am the author of my own story, after all.

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While looking for a greeting card the other day, I came across this empowering message (+ typewriter!) and fell madly in love. 💙 As a writer and an allergy mom, it connected with me on two very different levels. But it's definitely a much-needed reminder when going through challenging times or dealing with a health condition that makes you feel like you have very little control over your life. (Hello, Mystery Reactions! 👋) After my son's first anaphylactic reaction recently (and the negative ER experience that ensued), I decided to take things into my own hands. 💪 I've been in chats with @food_allergy_canada, my allergist, and Patient Relations at the hospital in question. Today, I finally met with ER chief and will be blogging about the resolution soon. Stay tuned for part 2 of our story! Or read part 1 here ➡ bit.ly/food-allergies-mystery-reactions . . . #allergymom #allergymama #foodallergies #foodallergiesbite #mysteryreactions #anaphylacticreaction #anaphylaxis #foodallergyawareness #spreadawareness #betheauthorofyourownstory #writer #freelancewriter

A post shared by Kathleen O'Hagan ⋆ Allergy Mom (@allergybites) on Sep 12, 2018 at 12:44pm PDT

I ended up speaking with Food Allergy Canada, my allergist, Patient Relations, and finally, the ER Chief at the hospital in question.

Most of the talks I had confirmed that my immediate reaction to how things were dealt with (i.e., something’s not right) was warranted. So that’s good, I guess.

But this whole experience has confirmed something else that is quite unsettling: The food allergy community gets a lot of different messages from a lot of different people.

As if food allergies weren’t mysterious enough as it is, knowing that many in the medical community don’t seem to know (or, in some cases, agree with) what our allergists are telling us is really disconcerting.

But let me start from the beginning…

After briefly speaking with Food Allergy Canada and my allergist’s office, it was clear to me that: (a) it is recommended that patients who have experienced anaphylaxis should remain under observation for at least 4 hours, and (b) this didn’t happen in our case.

When I reached out to Patient Relations to learn if their hospital didn’t follow this particular protocol, we ended up going back and forth a few times. I was initially told that the need for an observation period is determined by the original symptoms coupled with how a patient is presenting in the moment.

Apparently, the 6 symptoms that caused me to administer epinephrine in the first place were not indicative of anaphylaxis*. Plus, my son was presenting well (after the EpiPen), so it was okay to send us home right away. Oh, and he was an otherwise healthy boy, so he didn’t need to be observed even though there were 3 drugs coursing through his very young body. Apparently.

*I later learned the doctor had only recorded 3 symptoms.

Seriously?!

The more the doctor’s poor decision was justified with bad excuses, the more I felt compelled to fight this issue. So after several more follow-up calls and a request to review the doctor’s notes, I was finally invited to speak with the head of the ER in person.

Luckily, we happened to have a regular check-up with our allergist the week prior to my meeting with the ER Chief. At the appointment, I explained the entire situation so I could hear what she had to say. She felt we had been ‘wronged’ in 3 ways:

My son had not been kept under observation for the recommended 4 hours.
I was given no discharge instructions and had no idea what to look out for in case of a biphasic reaction or drug side effects.
I had not been given a prescription to replace the EpiPen we had used (or at least been asked if we needed one).

After speaking with her, let’s just say I went into that meeting with the ER Chief feeling super confident. But what I didn’t expect to hear was this:

The need for a 4-hour observation period in hospital is, in fact, “a myth.”

Say what!?

In all my reading and researching and talking to experts, I had not come across that important little detail once. But, he assured me, that’s the most recent allergy news being taught at ER conferences.

Huh.

Otherwise, he was apologetic and acknowledged that the doctor had not properly communicated with me. To which I agreed, and explained we wouldn’t even be having this meeting if this had been properly explained to me.

He apologized again and promised to bring it up at the next staff meeting.

Still, as pleasant as the ER Chief was to speak with, this mention of the “myth” left me feeling quite dumbfounded. I followed up pretty much immediately with Food Allergy Canada and my allergist (both of whom were waiting to hear back).

Needless to say they were as surprised as I was and, to my understanding, both have reached out to the ER Chief to discuss further and are looking into this “myth” on their end. More mysteries to solve!

To be continued…

Have you or your child had a bad (allergy) experience with someone in the medical community? Tell us about it. The more we share, the more other allergy parents can learn. Share your story in the comments below!

This post was written by AllergyBites founder, Kathleen O’Hagan. Kathleen is a writer, a foodie, and the mom of a toddler with multiple food allergies. Want to help make a difference? Contact Kathleen about volunteering for the Top 10 Challenge fundraiser.