Friday, September 12, 2014

You're prepared for an allergy emergency, but is your child?

Be prepared. It’s a mantra in our house. I thought I was prepared, I thought my 6 year old son was prepared. He was not, and therefore, I was not. Let me explain…

There are “2 pillars” to managing food allergies – prevent reactions and prepare to respond to the emergency (see AllergyHome’s great educational materials). We’ve had a few years to “prepare” ourselves to respond to a food allergy emergency should it arise. I thought I was “prepared” for when to use the epinephrine autoinjector (e.g. EpiPen, Auvi-Q), and I would not hesitate to use it. As an allergy parent, you go through all the scenarios, you have nightmares about scenarios, you hear of other family’s scenarios, and every time, you think about how you would respond in that scenario.

Image used with permission by AllergyHome.org

We prevent, prevent, and prevent some more on a daily basis. We’ve become so good at prevention that we have steered clear of a “major” reaction requiring epinephrine for several years – JR does not remember his last “major” reaction. We thought JR was prepared to respond (with the help of an adult, of course!). We talk about reactions with our son; he practices using the EpiPen; he knows when he should tell an adult (and he does!); we tell him, “fear the allergic reaction more than the shot from your EpiPen.”

Ten minutes before walking out the door to head to school earlier this week, JR came to me with a concerned look on his face, grabbing at his neck saying, “my throat feels funny and my tummy hurts.” Hmm… I racked my brain. It had been close to an hour since he ate breakfast and it was the same pancakes we made from scratch and ate the previous two mornings. Didn’t seem a likely culprit. But… he did just give our dog her usual morning treat five to ten minutes before. I double checked the ingredient list… none of his allergens.

We nervously sat on the couch, he continued to message his throat, and I fired off question after question trying to understand if this was an allergy, while simultaneously observing him for any symptoms. In the meantime, several hives popped out on his face and his nose became dreadfully snotty. Two or more different body systems were involved, it was time to “respond” and use the EpiPen (even though it wasn’t entirely clear what this allergy was from). I kept telling myself, “There would be no waiting around this time. Injecting sooner rather than later gives better outcomes. Fear where the reaction may go if I don’t inject.”

The next fifteen minutes were chaos. I grabbed the EpiPen from our kitchen basket where we always keep it, and went back to find JR. He took one look at the EpiPen, jumped from the couch screaming and crying, “No!!!”  I chased him, with EpiPen in hand, in a circuitous path from kitchen to front entry way to living room and round and round we went in a most awful game of cat and mouse.

After several unsuccessful minutes of chasing, I stopped and tried reasoning, albeit with a ten foot gap between him and myself. As long as I had the EpiPen in hand, he would not come near me. He didn’t trust me. He told me point blank with tears streaming down his face that he wouldn’t come near me to cuddle and talk because I was just going to inject him (damn smart kid).

I finally put the EpiPen down, much like a criminal with her hands up, but sneakily kept the pen within reach (he didn’t catch that). At that point, I attempted to pin him down… I couldn’t. He was flailing everywhere and hitting. I couldn’t keep on him without hurting him while simultaneously removing the blue safety cap on the EpiPen.

I finally backed off. At that point, I observed him. The reaction appeared to be reversing – no more sniffles and the hives were going down, not to mention he was putting up a damn good fight. He told me his throat still felt weird, but his tummy didn’t hurt. I told him I was not going to inject and he trusted me. I calmed JR down and sat both boys in front of the TV for an episode of Dinosaur Train and called the allergist’s office. (Yes, my two year old was a spectator through this chaos). I watched him very closely for the next couple of hours and there was no evidence of further reaction… the immediate crisis was averted.

The aftermath

So many questions and concerns have cascaded through my head in the hours and days following this reaction. We were so incredibly lucky that the reaction reversed, and for that, I’m very grateful. At the same time, I’m wondering, what did my son learn from how I handled the event? I feel like I’ve broken not only my son’s trust, but the trust I have as a mother to protect my child. Did my response just teach my son that he should not speak up to adults about allergy symptoms over fear of the EpiPen? Did I just teach my son that his symptoms, while fitting the definition for anaphylaxis, did not actually need the EpiPen? Did I teach him that running and fighting in the midst of an allergic reaction will get him out of an injection? If it had been almost any other morning, my husband would have been home as well, and no doubt the EpiPen would have been used successfully. In that scenario, I’m pretty sure my son would have learned that epinephrine works fast to reverse a reaction and does not actually hurt that bad if you don’t flail. Unfortunately, that was not our outcome and we’ve spent the last couple of days talking through with our son what happened, how it should have played out, and most importantly why.

The take-away


I knew we should have injected and was prepared to do so. I was not prepared for dealing with a very frightened, intelligent, and strong 6-year old child with no other adult around to help. Somehow, in all of my mental preparations of responding to a reaction, I was stuck in the past, remembering a toddler in the throes of anaphylaxis and had not imagined a 6-year old who understands, can reason, and put up a fight. Our practice sessions with the EpiPen gave no indication that this would be his response.

My hope is that you can use our situation to better prepare yourself and your child to respond to an allergy emergency. Reactions may be few and far between (thankfully!), but preparation must grow along with your child.

P.S.

We think the reaction was from the cross-contact of peanut butter on the dog treats and JR sucking his thumb shortly afterwards. We continuously emphasize good hand-washing and no hands in the mouth. It's a work in progress!

Disclaimer - Make sure you always have an emergency response plan worked out with your allergist for your child’s specific needs! This post is intended to help you envision a possible scenario, and is not medical advice. I have received no incentives for mentioning either EpiPen or Auvi-Q in this post.



15 comments:

  1. Oh my goodness! Thank you for sharing. That is exactly the kind of thing that could happen to so many of us. My daughter is also nearing 6 years old and I need to think through our emergency action plan more thoroughly. I am so glad things turned out OK, and I can completely relate to the "but what have I taught them?" thoughts. Getting away with something doesn't make it OK and that's a hard concept to teach ADULTS, let alone kids. (((HUGS)))

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  2. I'm so glad you shared this story. I had never mentally prepped for my child resisting the EpiPen! We are in a similar position - we've never had to use an EpiPen even though we always carry one, practice with the trainer, discuss the symptoms to be watchful for, etc. My son is now 7 and he's also a clever boy, so I can just imagine him doing something similar. Perhaps your son had an internal sense that he was on the mend? Kids often have pretty good instincts. I have to believe that if he really felt like things were getting worse, he would have stopped resisting. What a relief that he is okay!

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    1. Thanks for commenting! That's what I hope, too. Bottom line is that allergies are frightening and unpredictable beasts!

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  3. Sometimes a person may get better after a severe allergic reaction but then have symptoms come back even stronger several hours later. What do you recommend should be done?

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    1. These are called biphasic reactions and they are scary! That was something that I watched for incredibly closely in this particular reaction with my son. I think the most important thing is seeking medical attention and getting the appropriate advice from medical providers for your unique history and situation. Unfortunately there is a risk for those secondary reactions and it's just being aware that it could happen, looking for symptoms, and injecting epinephrine if symptoms recur :(. Thank you for bringing up that question. Unfortunately, I don't have an absolute answer because there isn't one. Allergies are wily, unpredictable beasts.

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  4. I was afraid of the EpiPen as a kid, though I never did this (quite possibly because my parents never actually needed to stick me.) Thank you for bringing up this possibility, it gives me more things to discuss with my kiddos during our car-ride "safety chats."

    I'm glad your son was okay. I second the thought that he probably would have come to you for the EpiPen if he'd felt himself tanking. (Or he would have been in less shape to resist--but that's a scary thought in and of itself.) But again, I'm glad he's okay.

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  5. I find it extremely important to talk to your children if they have food allergies and explain to them how to stay away from those foods or substances. It is also really wise to talk to an allergy specialist because they can aid in explaining what will happen to your child and also offer tips on what to do if they do come in contact with the allergen.

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  6. My nephew is allergic to peanuts. My sister has to watch him very closely to make sure that he doesn't eat any. I think that she should take my nephew to see an allergy specialist. The doctor might be able to help my sister deal with her son's food allergy. http://www.drdianeozog.com

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    1. Allergy specialists are so very important for anyone dealing with a food allergy. I hope she is able to see a specialist to help manage her son's allergy. Best wishes for your family - this allergy journey can seem tough and lonely at times.

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  7. I found out when my son was just little, that he was terribly allergic to peanuts. When he got into school, I made sure that everyone knew that one peanut could send him to the hospital. Well, he had no idea, and didn't really understand that he wouldn't eat certain things. I wish I would have read this before, and prepared him a little bit better. There were a couple times that I got a call saying he was getting rushed to the hospital for eating something that was exposed to peanuts.

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    1. Lacey, thanks for sharing. It's so very scary. We all try our best to prevent, but then need to be ready to respond when prevention fails. It's so hard to know what will actually happen in the moment when those moments (thankfully) don't happen very often. We do the best we can and can learn from each other's experiences!

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