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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  1. I can so relate to...."when is it real....when is it bad enough....and I hope never....when is it too late." My son is 6, so I still have some control... I dread the day when he is on his own. Love your blog.
    From, Nicole.....someone who really "gets it".....

  2. Oh my, I have so many questions and am more confused than I ever was (not by your post). We have never had to use the epi pen and I thought I knew to use it when he was having difficulty breathing but now I have learned that could either never happen or be too late. I am not sure if I learned this from your blog or another source but I also know that children may die of a sudden drop in blood pressure rather than airway constriction. Again, I'm so confused. Could you give me some sources that I can read up on about when to use an epi? And what is this about a fever? My son is 7 and allergic to diary,some nuts (including peanuts but not almonds surprisingly) and eggs. He has eaten eggs (they gave him an itchy mouth). Dairy can make him sneeze and have lots of mucous, vomit and/or have diarrhea. He has never eaten peanuts but has broken out in hives locally when they touched his skin (same with dairy).

  3. I have nearly taken too long to give it to my son before. I've reached the point where I accept that he's going to get stuck by me unnecessarily from time to time over the course of his life.

  4. htg20, I want to make sure I was clear: if there's a *fever* involved, it's probably NOT anaphylaxis.

    This is a very good resource:

    FAAN's page has the "when to use" chart:

    Beyond that, I really think it's crucial that every parent sit down with their doctor (make an appointment just for this if necessary) and talk through the action plan. Because it's specific, it will allows you to have all the conversations about what a drop in blood pressure looks like, or whether hives and a known peanut exposure is enough. A great deal of it depends on your CHILD'S history, which is why the idea of getting medical advice from blogs or chat boards is not good. My kid will not react like your kid.

    Each child has mast cells that are triggered when an allergic reaction occurs, and that's what creates the symptoms. Each child's cells are different. The cells may even be triggered differently depending on the *allergen*!

    There's just no substitute for a good doctor's help. If you don't have one, you have to work until you find one.

    Please don't let the post stress you out. I do think it's important to talk about when to use epinephrine *before* you need it, but you have to do it in small steps.

  5. Josh, underlying this post was the new study that came out that showed people don't use epinephrine enough:

    You're not alone! Obviously, I also have waited too long. I've also not given it at all when I should have.

    The chat board comments about this study tend to be "what's wrong with people that they don't use epinephrine?" That's why I think it's important to admit that I sometimes feel clueless, even after 17 years of this. It can seem on the internet like everyone else knows what they're doing and I think it makes less confident moms not want to admit to their confusion and hesitation. (And I honestly think the moms who are acting superior are just doing it to make themselves feel better -- no one is an expert at this.)

    My doctor once told me that he'd let me know if I was giving epinephrine too much and I should just do my best and trust my instincts. It's all we can do!

  6. Thanks, Nicole!

    Hopefully, by the time your son is on his own, there will be a cure and this will all be a quaint memory. :)

  7. On a more practical note, the cost of this device will probably be pretty expensive -- most likely more than the epi-pen, but at the very minimum comparatively priced. Insurance companies won't want to pay for it.

  8. Okay, I was confused on the fever. Yes, I am getting information from several sources. I forgot to mention I am a senior nursing student so I feel like I have a slight advantage there when it comes to finding and understanding medical advice. What I also forgot to mention is that when I took my son to a new doctor (hoping she would be better) she couldn't even give me an allergy action plan for school. She acted as if she had never seen one before and didn't know what it was. I am just more and more surprised by the lack of knowledge and preparedness of medical professionals every day. No doctor has even told me how or when to use an epi pen. I have never even been shown how to use an inhaler without asking. Now that I am in nursing school and doing more of my own research I know the questions to ask but there are so many out there who don't and it could be too late for their child when they find out.

  9. My daughter found a tiny bit of peanut when she was a toddler and my husband and I sat there staring at her for 20 minutes, waiting to see what would happen. Our conversation went something like "do you think her cheek looks puffy?" "I don't know, maybe a bit" "she seems to be breathing fine" "maybe we should just give her the pen anyways" Well, she eventually showed her first symptom (lip swelling) and we gave her the pen and went to the ER. We had been through many reactions before that, but hesitated because she had always gotten a rash and vomiting. I'm glad you wrote this post, because I don't think many parents probably really understand how much a reaction may change until it happens to them. I'm going to share on my blog if you don't mind.

  10. I don't mind at all - thank you! It's definitely an important message.

    One of the saddest parts about teenage food allergy deaths is that all the peripheral symptoms can be gone, so a food-allergy reaction looks like asthma. It's so important that parents of older children know it's a possibility.

  11. I can obviously only plead the fifth on this entire post.

    I *have* been guilty, guilty, guilty of not using epinephrine... and if I'm brutally honest, it's probably been well over a dozen times, at least in hindsight.

    The problem is that it's just so seldom that clear when it's happening.

    Our only real indicator is the suddenness of onset. There's nothing else like it. The bad news there is that there's also NO TIME TO EVALUATE what is happening. Bummer, that. Yes, really, it's often a sense of "Wait-- wait-- I know this one! Wait a minute... WHAT THE HELL???" as my daughter bypasses all of those nice tidy grade 1 and 2 symptoms of anaphylaxis... and proceeds to keel over unconscious.

    Even worse, the very first symptom in the past several very severe anaphylactic reactions, and the common feature in ALL of them since my daughter was about seven? Cognitive impairment from crashing blood pressure, ultimately severe enough to cause a loss of consciousness if she remains upright.

    In other words, not only are there no peripheral symptoms, but the one telltale symptom is the one that robs the person of the ability to self-treat or self-advocate effectively, and provides very few signals to anyone else that something is amiss at all.

    Scary, scary, scary.

    For help with interpreting what you're seeing and what it means (this may be the same chart posted above by the FAB)...

    and the plain-English version:

    PS. My 13yo DD *loves* the idea that she might be able to tuck one of the new autoinjectors into a 'cute' purse rather than a bulky one. I love the idea that like an AED, it may give even a completely untrained bystander who sees her collapse a chance to help save her life (she wears a MedicAlert bracelet).


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