Monday, August 13, 2012

Why We Don't Use Epinephrine Enough

Sanofi came out with a really cool product today: a credit card-sized epinephrine injector. I've been following the press about the eCue, but this one snuck out of nowhere for me.

It's great. It has step-by-step audio instructions, plus graphics. It seems to be pretty easy to use (just take off the safety cap and inject). It's smaller, so kids    especially boys    are more likely to carry it, right?

And yet, I doubt it will make a difference.

There are two issues the device fails to address: recognizing anaphylaxis and acting once we see it.

I always hate talking about this topic because it really underlines that I am a slacker mom. We've experienced a lot of reactions in our house. Part of that is because my husband and I were probably a little too lax when my son was young. The rest was because he has a lot of allergies, and very common allergies. It's very, very hard to keep a severely-milk-allergic child safe 100% of the time unless you just never eat out or never use processed foods.

For better or worse, I do have some experience at recognizing food allergy reactions. Other than the few times where my son had a large amount of an allergen, we have never been sure we were dealing with a food allergy reaction.

Here's my theory on why.

1. Reactions change. Each reaction can be different, and reactions over time can be different. My son used to get really spectacular body hives when he was young. Then, suddenly, he didn't. Instead, he got a tell-tale rash around his mouth. Until he didn't. You can see where this is going...with reactions happening infrequently, it's very hard to see the change in symptoms. We often waited around for the hives to show...or the rash to show...or the flushing of his ears to show. But, as he aged, they didn't show and we were left wondering every time what we were dealing with.

Vomiting with fever  probably a virus. But what about vomiting with a hive-like rash and no fever or other symptoms (even feeling sick)? The time this happened to us, it still turned out to be a virus. It would have been awful if I had given him epinephrine on top of his illness, but it was sudden onset and I was very unsure for the first hour.

The point is, I can count on a couple fingers the allergic reactions he's had that followed the "traditional" pattern of itchy mouth/throat and hives, followed by vomiting and swelling, followed by asthma. Now put yourself in the place of the school nurse, or the harried elementary teacher. They don't know the child's history. How can they make sense of any of this?

That's why a reaction plan is so important. We filled the form out ourselves, but we also independently asked our physician to fill it out. We then compared the two and discussed where they differed. We learned a lot from him about what we should be doing, and he learned a lot from us about our son's unique symptoms.

For example, our jr. high action plan called for giving epinephrine in the event of any after-lunch wheezing without fever. This would definitely not be appropriate for every child. However, my son's history made this an appropriate plan for us.

2. The hunt for the allergen. It can be so hard to believe a reaction is happening when your kid hasn't eaten anything new. And yet, several of my son's mild reactions have been situations where we were never able to trace the food for certain.

I have actually found myself on the phone, calling a manufacturer in the middle of a reaction. Did I really think I was going to get an answer in the time I had to make a medication decision? And yet, it just seems so impossible it was happening when there had been no new foods.

We already know a large percentage of foods labeled "may contain peanut" actually DO contain peanut. The 2010 study by Sicherer, et. al., showed more than 5% of "may contain" foods did contain peanut. It shouldn't be surprising, but it is surprising.

3. The frog in the pot. There's a classic story that's told a lot in business environments about how to boil a frog. Supposedly, if one places a frog in a pot of water and turns the water up gradually enough, the frog will never notice it's being made into soup.

Reactions are a lot like frog soup. They can build and build and, because you get used to each level, you may not recognize the overall seriousness of things.

This is also where that expected symptoms list can trip you up. Vomiting can be innocent. Even vomiting and wheezing could just be a virus, especially when there's no known exposure or even likely candidate as an allergen. It's easy to see how other caregivers, and even parents, can misread the symptoms and wait to give epinephrine. They're just waiting for that one. next. thing.

4. The BIG deal. We all know that giving epinephrine is an instant hospital trip and probably a call to the EMTs. It's incredibly stressful for the child. It's at least four hours (usually six) of observation afterward. It's going to cost money.

Of course we shouldn't think about all those things, and we probably don't think about most of them consciously. But we do think about them subconsciously, and our subconscious is often the one calling the shot. Literally.

Before we can stab our child with that device, the voice in our head says, over and over "is this really that big of a deal?"  In addition, there's another voice saying "are you sure?" (Which you never are.) And another voice saying "what if I hurt her with the needle? or the medication?"  And a voice saying "I'll never live this down/trust myself again if I'm wrong."

It is a big deal, there's no denying that. And yet, we have to prime ourselves to push past the voices and make a clear decision, all in the space of about 15 minutes (if we're lucky). Add to this that most people freeze when they're stressed and it's easy to see why this is so hard.

I really love the idea of the new autoinjector. I've already sent the link to my son, along with the inevitable joke about "is that an Epi-Pen in your pocket, or are you just glad to see me?" This will definitely be better.

But I'm also aware that, experience wise, he's starting from scratch. For seventeen years, it has been my experience, my hunt, my frog, my big deal. Now it's his. And, as with so many things in life, there's no way to just transfer my experience into his head.

Instead, he'll have to stand in that restaurant, or cafeteria, or kitchen of the future, holding his awesome tiny new epinephrine injector, and its size won't matter a whit when it comes to making the hard call.

When is it real? When is it bad enough? When is it too late? 


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