Epinephrine Injectors Don't Always Work

Epinephrine injectors don’t always work. Yes, that’s what I said. Let it sink in. Epinephrine injectors don’t always work.

This blog post was inspired by a post from a mom, Misty Gardner, in a food allergy support group. Her son just had a severe reaction during an accidental exposure to dairy and wound up in the Intensive Care Unit. Fortunately he is okay, but I was so moved by her experience and desire to educate others that I reached out to ask if I could share her story more broadly. It follows my commentary below, and is well worth a read for some perspective on living with food allergies and how easily a simple mistake could result in a tragic outcome.

In the nearly seven years my son has lived with food allergies, I can’t tell you how often people have asked “Why are you so worried? Don’t you have EpiPens?”

Well, yes, I always have them with us. Everywhere my son goes so does epi (along with his diabetes rescue injection, but that’s a different post!). But people have a false sense of security about them. I mean, most of the time they work. I just don’t want to be in a situation in which they don’t, so I’m very attentive to all things food-related. And that is why people with severe food allergies are told to follow strict avoidance of their allergens. As Misty said to me, “Epinephrine does not replace vigilance in the first place and should not be the ‘end’ of planning… in that the emergency does not end with administering the epi (even if it works perfectly as expected, but more so in the case that it doesn’t) so the plan should be rehearsed.” 

Why don’t they work? There are many reasons, but here are some of the most common ones:

Operator Error

The person who needs to administer the epinephrine injector doesn’t know how to use it… sometimes sticking themselves with the device in an attempt to administer it. There are many great resources available online for learning about the various injectors on the market and proper use. Make sure everyone who might have to use it is well-trained and practices with the training device or expired injectors. (I find that practicing on a roll of paper towels most closely mimics giving it in the thigh.)

Device Failure

We’ve had recalls of epinephrine injectors in the United States. Again, it’s not a common occurrence...but it is one of the reasons you should always have two available.

Delaying Use of Epinephrine

This is a perhaps the most important one. As a parent, I used to be afraid to give it. I’m sure some of you can relate to that question that ran through my mind: “Is this reaction severe enough for me to give it?” My fear was based on a variety of things, largely unfounded. I’ve given it three times now, and my fear is gone. When in doubt, I give epinephrine. In fact, his allergy plan (provided for free by FARE and completed with our allergist - get a copy here) at school says that unless my son has a fever, if he vomits they should assume accidental exposure to an allergen and give it. (My kid isn’t really a kid who vomits often, except for during allergic reactions.)

Severity of The Reaction

Sometimes reactions are so severe that epinephrine injectors aren’t adequate to control the symptoms. That has been the case with several families who have lost their children to food allergies. In some cases, a delay in epinephrine allows the reaction to progress to a point in which they aren’t enough, but as you’ll read below, was not the case in Misty’s situation. She gave epinephrine as soon as her son showed symptoms, which was about 30-40 minutes after accidentally consuming his allergen. 

By no means am I trying to create irrational or excessive fear in the food allergy community. BUT I do think it is important to have a healthy regard for the real risks involved in living with food allergies and make educated decisions. (See my post on Defining Acceptable Risk For Our Children.)

My final thoughts: One minor reaction does not mean the next one won’t be more severe. Always have two epinephrine injectors with you. Have an emergency management plan that you have rehearsed, because in the moment it’s easy to forget what to do. And perhaps most importantly, as in Misty’s post below, listen to your gut (both literally and figuratively) about allergy-related decisions.

Last night our worst nightmare almost became our reality. I thought about not posting because there's no cute pictures, there's nothing funny. It was traumatic and almost tragic. But you know what, it's important. So I guess this is just kind of a PSA...

Food allergies are serious. And life threatening. Even I almost forgot.

Be mindful of those with food allergies. Be vigilant if you are responsible for one.

Last night we went to dinner and ordered my dairy allergic son plain pasta. He got served pasta with butter. The waitress made a mistake. The chef made a mistake. And we, his parents who are ultimately responsible for keeping him safe, made a mistake. I knew. I knew it but was reassured that there was no butter by both the waitress and my husband.

I knew. I went against my own judgment and let him eat it.

30 minutes later, despite administering two epipens almost immediately after he began to react, he went into respiratory failure and anaphylactic shock. He was intubated in the ER of one hospital and transferred to the ICU of another, better equipped hospital. It was a nightmare. It was a really close call. I've never been more scared (even with all of his asthma episodes) and I've NEVER felt more fortunate because today, he is okay.

He will be discharged tomorrow and we will go home.

And I will post those vacation pictures. And we will all move forward. More carefully.

Moral of the story... never question your gut. NO ONE knows better than mom.

I did and it very nearly cost my child his life. Never again. 

As I reflect on the events of that night, I realize how many people were involved in not only saving my child but keeping my husband and I sane, and my other children safe and calm.

Dozens, really.

Of course there were the cops, the firefighters, and most importantly the paramedics, nurses, and doctors. You saved my child's life. There is no way to properly thank you.

You are every day heroes.

There were also the unsung heroes... the people that stopped and called 911. The lady that gave up her umbrella and stood in the rain. The man that held that umbrella over my baby. The paramedic on vacation who stopped for us and kept track of my baby's pulse and helped guide us with what to do while we waited for help. And his two beautiful friends (Kayleigh [sp?] and Emily, my daughter remembers) who sat with my other two, calmed them and kept them safe.

And anyone else who fell outside of my tunnel vision that night.

If you were on Clifton Hill in Niagara Falls, Ontario, on Friday August 17th 2018 at about 10pm and you helped my family in any way... He lived.

He is home in New Jersey and back to his 3 year old antics. Because of you. Thank you.

Please share. If I had been so brave and selfless, I would want to know the outcome.

Maybe this thank you note can reach some of those wonderful people.