This blog post is part 1 of a 3-part series. Read part 2 here.
Last Friday, my son experienced his first anaphylactic reaction. I didn’t even realize it was truly an anaphylactic reaction until I arrived home and reviewed the symptoms of anaphylaxis. Why didn’t I know? Because the whole experience was a mystery.
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For the first time ever, I had to Epi this little guy today. There was no known ingestion of any of his allergens, but he began to show signs of a reaction after playing in the park. I admit, I hesitated for this reason. I nearly talked myself out of it, but there were too many systems at work for me not to act. His eyes were puffy and itchy, he had red splotches on his face, his eyes and nose were leaking profusely, he was doing weird things with his tongue, and he was saying he had an "ouchie" in his throat. And yet… when we got to the hospital, the doctor minimized the experience by sending us home right after giving him some shots of medicine. I have always heard that a patient needs to be monitored in hospital for several hours after having a reaction / administering epinephrine, so I was really taken aback. And since I had been hesitating to use the EpiPen to begin with, this experience didn't make me feel very confident in my choice. I am so saddened (and kind of terrified) that many in the medical community don't have the knowledge (or compassion) to properly deal with anaphylaxis. (I've heard one too many stories!) Has a doctor ever made you feel like you were overreacting when it came to your child's allergies? . . . #allergymom #lifewithfoodallergies #foodallergies #multiplefoodallergies #anaphylaxis #allergicreaction #epipen #epifirstepifast #foodallergiesbite
First, he hadn’t ingested any of his allergens. In fact, he had been playing at the park and hadn’t eaten anything (to the knowledge of his care provider). But she noticed a hive around his eye when they returned home, and soon after that, he became mysteriously congested (at which point she called me). By the time I arrived (thinking I’d be giving him a dose of Claritin and heading back to work), his eyes were puffy and watery, his nose was running excessively, he had splotchy marks on his face, he was playing with his tongue, and when questioned, he told me he had an “ouchie” in his throat. And not surprisingly, he wasn’t in the greatest of moods.
And yet, even with all these symptoms, I still hesitated to give him the EpiPen. Probably because there was this awful voice at the back of my head telling me not to overreact. It’s not like his lips are blue, it was saying. And his breathing is fine. And there’s no swelling in or around the mouth.
Well, those aren’t the only symptoms of anaphylaxis. So kindly shut up, voice inside my head.
It was honestly like I had internalized society’s view that every allergy mom (or dad) is just an overprotective, overreacting helicopter parent. And I was trying to prove to the world (to myself?) that I wasn’t.
Luckily, my child’s caregiver (who has food allergies herself) gently encouraged me to give him the EpiPen. So I did. And he cried. A LOT. (He liked EpiPens up until this incident.) But as I watched his symptoms vanish pretty much instantaneously, I knew a little bit of crying wouldn’t hurt him. In fact, it might save his life.
This part of the experience wasn’t mysterious, it was magical.
Because, wow, does it ever feel good to see all those awful symptoms go away so quickly. But it doesn’t mean you’re home free just yet. You still need to go to the hospital and get treated by a medical professional. Since an EpiPen simply buys you time. Which is why…
The attending doctor’s reaction to our experience was a mystery in itself. According to the books, we had done everything right. But he certainly didn’t make me feel that way.
It was like he had never dealt with an allergy patient before and was unaware of the fact that the symptoms had been controlled by the epinephrine. He completely minimized the experience by giving my son a dose of Benadryl, some steroids, and sending us home. Immediately.
As I walked out of the hospital with my precious child in my arms, all the alarm bells were going off in my head. While this was the first time I had ever Epi’d my son, I had read enough to know that not keeping him for observation for several hours was wrong. So I parked my car outside the hospital and sat outside, feeling shaken up and uncertain about what to do next. But he seemed fine, so we headed home after about 30 minutes.
When I got home, I chatted with other allergy parents, checked the Food Allergy Canada website, and spoke with my allergist’s office. All confirmed that he should have remained in the hospital under observation for at least 4 hours.
Geez, that’s a pretty big (and scary) mistake to make.
To make matters worse, the doctor did not tell me what to do if symptoms recurred, or if we should be watching out for any side effects from the drugs he had given my son. (So when, 30 hours later, my son couldn’t stay awake long enough to eat dinner… and kept waking up, crying hysterically and holding his poor little head in his hands like he had a really bad headache, I was freaking out. Luckily, I have a wonderfully supportive food allergy community to turn to in times like these, and I learned that this was quite normal. In fact, one adult with food allergies told me she feels like she’s been “hit by a truck” in the 48 hours that follows an anaphylactic reaction.)
Add to all this we were not sent home with discharge papers (so I don’t know the name of the steroid my son was given) OR a prescription for a new EpiPen (luckily, we have extras at home, but the doctor didn’t even bother to ask). I’ve since learned that an EpiPen prescription is the norm in these cases.
Not sure the situation could have been handled any more poorly.
Now you can argue that I should have been asking questions and advocating for my son while I was there. And all I can say to that is that it was my first time (so I didn’t know what was normal/what to expect) and I am (clearly) not very good at handling these situations when under a lot of stress. It also didn’t help that the doctor made me feel like we didn’t need to be there.
But don’t you worry, I’m advocating for him now! By sharing my experience on social media, by writing this blog post, and by filing a complaint at the hospital. The good news is that someone from the hospital Patient Relations department has already been in touch with me to gather more information, and now I’m just waiting to hear back. To be continued…
Less than one week after this incident, my son had another mystery reaction. This time, his hands and feet swelled to a disturbingly large size, and we noticed weird white bumps around his ankles and splotchy rashes on various parts of his body. We gave him Claritin and called Telehealth Ontario, who advised us to bring him to the doctor the next day if the symptoms remained/recurred.
Everything cleared up and all is well, but a few allergy parents have told me their little ones’ hands/feet have swelled up due to anaphylaxis. To my knowledge, this sort of swelling is not on any of the official allergy websites as a sign to look out for, so we didn’t really consider that this could have been another anaphylactic reaction. But what if it was? What if he’s developed a new allergy that we aren’t aware of just yet? So many unsolved mysteries at this point…
Have you or your child experienced a mystery reaction? I’d love to hear 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.
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