It’s been a while since I first wrote about my son’s first anaphylactic reaction. I didn’t expect it to take this long to share with you the series conclusion. But it took this long for me to hear back from the experts I had turned to for advice back in the summer.
The truth is, after initially being super helpful and responsive, they essentially went MIA. (I get it… they’re busy people…!) But I had kind of given up hearing back from them. And then my son had another mystery reaction over the Christmas holidays and we had to Epi him again. I realized it was time to follow up!
See this time, we were out of town, at a different hospital. This time, my son was kept under observation for 6 hours, despite “excellent vitals.” This time, 3 different doctors told us we had absolutely done the right thing — keeping in mind none of us was 100% certain his reaction was actually anaphylactic. This time, we were given a prescription for 6(!!) new EpiPens to replace the one that we had used.
Wow, what a completely different experience this time around.
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So this happened. I had to Epi my little guy — on his 3rd birthday no less. Luckily, the ambulance ride was probably the best gift ever. 🚑 (We may never be able to top that one!) But seriously, what a stressful "holiday" this has been. Mystery reactions that consisted of full-body hives/rash since Christmas morning. Lots of itching, lots of worrying, and lots of "whinging" from a grumpy little boy. 😣 Because my son hadn't ingested anything new, and because only 1 system was affected, we treated the hives/rash with Claritin and were fooled each time his skin cleared up. It would always come back with a vengeance (usually overnight). After a particularly bad night, we headed to the hospital first thing in the morning and were lucky to be seen second when it would have otherwise been a 4-hour wait. Perhaps this is the *only* time food allergies are a good thing. 👍👏 After the doc gave our little guy some steroids and prescribed him some strong antihistamines, we thought things were looking up. But nope, the next day (his bday) would find me administering the EpiPen because the itching was SO bad and it looked like he was working hard to breathe. A ride in the ambulance followed by 5 hours of observation at the hospital, and we were home with more meds and a much happier boy. 😊 And his mama is happy to say that his rash hasn't resurfaced since. We are crossing our fingers that it doesn't reappear after we run out of the meds we were prescribed. And if it does, we may be looking at something called chronic urticaria. Not fun. Hope everyone else's holiday was a little less eventful and lot more relaxing!! Any crazy holiday stories to share? . . . #christmasholidays #mysteryreactions #anaphylaxis #EpiPen #birthdayboy #happybirthday #ambulanceride #foodallergies #multiplefoodallergies #urticaria #allergyfamily #allergydad #allergymom #allergymama #allergymoms #lifewithfoodallergies #foodallergiesbite #allergybites
I have to admit that I felt quite validated hearing I had done the right thing — 3 times — but I was also super confused. Why are some health professionals so on the ball when it comes to food allergies, while others are clueless about this life-or-death condition? Why were these seemingly capable doctors continuing with the observation “myth” — as the ER Chief had called it — when my son’s breathing, heart rate and demeanour were deemed “excellent”? (Thank you, EpiPen, for working your magic!)
I didn’t have an answer, so I decided it was time to follow up with the experts to get some. While Food Allergy Canada reached out to their medical advisor who confirmed that an observation period after administering epinephrine is still protocol, I’m waiting to hear what came of their conversation with the Chief .
My son’s allergist, on the other hand, told me that she had forwarded the ER chief an extensive list of research findings that proved that the need for an observation period is absolutely, positively not a myth. While I’m not sure he was convinced he was in the wrong, (he simply responded with a polite “thank you” and didn’t engage further), I can only hope he doesn’t continue to spread this misinformation to his staff and other newbie allergy patients like me.
While chatting, she also thanked me for bringing this issue to her attention, and encouraged me to do so again if ever something fishy comes up again. So now I’m going to encourage you, the food allergy community, to do the same. Anytime something doesn’t feel right at the hospital, in the ambulance, at your doctor’s office… ask questions. And then ask some more. File a complaint, if you think it’s necessary. Reach out to organizations like Food Allergy Canada. And absolutely share your experience with your allergist. Don’t stop making noise until you feel satisfied with the response.
Because we all know how frustrating it can be to receive such mixed messages from the medical community — especially when our child’s life is on the line. I recall one terrifying story about an allergy mama who believed her child was having an anaphylactic reaction and called 9-1-1. When the ambulance arrived, the paramedic tried to convince her that her baby only needed Benadryl, that a visit to the hospital was not necessary. Luckily, she didn’t listen. By the time they arrived at the hospital, her child was barely breathing, and the nurses yelled at her for not administering epinephrine sooner. Talk about mixed messages! Thankfully, her story had a happy ending. But it could have turned out very differently if she had taken the paramedic’s advice. Stories like these aren’t just frustrating — they’re terrifying. And that’s why we have to keep fighting! Or why I will, at least. 😉
Well, guys. That’s my story. I hope sharing it with you will help you: (a) feel more confident about administering epinephrine — even if you aren’t 100% sure if it’s anaphylaxis, (b) better understand what is normal treatment at the hospital, and (c) motivate you to speak up when you feel like your food allergy child has been wronged by someone in the medical community.
Because our kiddos deserve better.
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.
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