All of us food allergy folks carry them: the famous EpiPen® (or Auvi-Q or Adrenaclick). For those with severe allergies of any kind, this is a life-saving drug and device. But my family has had some struggles using and understanding our auto-injectors. In this series, I’ll share three practical problems we’ve run into, and how we’ve learned (or are learning) how to deal with them.
Ephinephrine Dilemma #1: When do we give the epinephrine medication?
This is an obvious question, but the answer is not so obvious.
When our first daughter was diagnosed with multiple food allergies, we were taught to use the auto-injector for anaphylaxis. We thought anaphylaxis was only the throat-closing/can’t breath variety of allergic reaction. We weren’t that concerned, because Izzy was only a baby (her diet was obviously limited) and her only reactions up to that point had been some stomach discomfort and eczema. As she got older, my daughter did have a couple reactions — once with vomiting and diarrhea, another with just an itchy throat– but again, we assumed the auto-injector wasn’t needed for those.
It wasn’t until I made a mistake one day and mixed up her lunch plate with mine that I began to question whether the epinephrine was needed. I’m not sure where my brain was, but I gave Izzy the casserole with regular cheese instead of vegan cheese. She began to complain of an itchy throat, and that was when I realized my mistake. I remained calm and waited to see if it would pass (as her milder reactions had done before). After a bit, she started to complain about her tummy hurting, after which she started to really complain and cry about her abdomen and throat all at once. Pretty soon, she was crying and gasping, and I couldn’t tell if she was seriously having breathing problems or if she had just worked herself up enough to make it appear as if she was.
Internally I was debating about whether she needed the epinephrine. She was definitely having a reaction, but was it mild or severe? She had an itchy throat and a stomachache, but she had had those before. Was she really struggling to breathe, or just being dramatic (as she is wont to do)? Then I began to question my judgment. Was she wheezing or not? Was her skin starting to look pale or was I just imagining things?
Our allergist had told us that epinephrine can’t really hurt someone if given unnecessarily; he has recommended that you always err on the side of caution and use it. My gut was giving me an uneasy feeling, so I gave it. Since then, after educating ourselves, we’ve learned that anaphylaxis can actually be a combination of reactions, and it doesn’t have to just be wheezing or difficulty breathing. The FARE website has a helpful explanation of the combinations of reactions that require epinephrine here.
After even more reading and research, it is evident that this is a common problem for those of us dealing with food allergies. Many people who carry epinephrine aren’t confident about when to give or take it. Even doctors have recently debated what constitutes anaphylaxis. At my daughters’ recent allergy appointments, we discussed this with our allergist again. He confirmed that isn’t an easy answer, because real-life symptoms are hardly ever as cut and dry as the books or safety handouts like to suggest. Overall, if there are any kind of breathing problems (especially in combination with other reactions), the epinephrine is probably needed.
Long story short: don’t feel bad if you’ve had a similar experience, or if you have similar fears!
Looking back now, I’m certain I made the right decision for these reasons:
- I knew she had ingested a known allergen.
- She was manifesting oral symptoms (the itchy throat).
- She was manifesting digestive problems (abdominal pain).
- Whether aggravated by her own distress or not, she was breathing strangely & gasping (though not obvious wheezing), which may have been an asthmatic reaction triggered by the allergen or by her own stress.
I highly recommend you check out this e-book from the May 2014 edition of the Allergic Living News Report, which discusses anaphylaxis and some practical tips about when to give and when NOT to give epinephrine.
I know that my husband and I were probably properly educated about anaphylaxis early on in Izzy’s diagnosis. But not having to use the epinephrine contributed to us becoming complacent, I think. If you have never used an auto-injector, or if you have (and it was a while ago), stay up to date on the latest information about anaphylaxis, and keep that information fresh. 🙂
Have you ever questioned whether or not to give epinephrine? I’d love to hear about your experiences!
*** DISCLAIMER: While I strive to find solid information in my research and I share my family’s stories with you to build a community of support & encouragement, I am NOT a medical doctor or professional dietician! Nothing here is meant to diagnose, treat, or prevent a medical illness. If you suspect you or your children have food allergies or have food allergy related medical questions, you should consult your physician. Food allergies are nothing to mess around with! ***