Wednesday, July 31, 2013

When Food-Allergy Mortality Smacks You Upside the Head

Yes, I know about the latest death in our community. I started a long screed here about all of my favorite hobby horses:
  • The dangers of giving global medical advice over the internet (yes, I'm looking at you, web sites who are telling everyone to start giving epinephrine even before symptoms)
  • The nastiness of assuming this child's family has lost their right to privacy because they've experienced a tragedy (yes, I'm looking at you, web sites who continually stir the pot for internet traffic)
  • The danger of wallowing in the very rare, worst-case scenario and the impact it can have on our ongoing anxiety disorders (which, admit it, we all have at this point)
But really...writing about all that is just my way of avoiding something we all do not want to think about:
Some kids die and there's nothing we can do about it
The father was a doctor, for heaven's sake! He was right there. He treated her based on his training and experience. I have no doubt he did the best job he could do, probably that anyone could do. And yet she died. The medical community is aware of a hard truth: some cases of anaphylaxis are simply refractive to epinephrine. Sometimes there is nothing that can be done.

And yet, we are all nit-picking the situation apart, hoping to learn something new from it.

I cannot imagine the grief of this family. But I can certainly project that grief onto my own situation if I allow myself to do it.

Excellent article about how
not to say the wrong thing
while someone is coping
with illness or loss
I heard an interesting term the other day: grief appropriation. I have a friend with cancer and I have been doing some reading about how to be supportive rather than annoying while she's doing chemo. This was one of the nuggets I learned: don't appropriate her grief. Don't put yourself in her spot. Don't empathize to the point that you are taking over the situation, and not allowing her to express the emotions she needs to express.

How much weirder is it to do this with someone we don't even know personally? To add to their burden by kvetching on the internet when we aren't even in their intimate circle?

Look: I've been writing about this for a year and a half now. If you want to wallow, I'm not going to be able to stop you. If you want to look up every web site, and imagine your child in her place, dead on the floor, it's your choice. But it doesn't help. It doesn't help. And those types of thoughts really can do physical and mental harm.

This is the part that makes me so angry about how these stories are handled on allergy web sites: they are never disseminated with balance. They should ALWAYS be framed with the statistics: only a handful of kids die from allergies each year.

It's odd to think that admitting some kids simply die can be a freeing thought...but it can. We cannot prevent all harm to our children. Whether it's the pedophile, or the car crash after prom, or the runaway food allergy reaction, there are things that just happenBUT THEY DON'T HAPPEN TO MOST CHILDREN. We take every sensible precaution...but then we have to let go.

By all means: review your medical plan. Challenge your doctor as to whether epinephrine should be administered if there is a known exposure to an allergen, especially if that allergen is tree nut or peanut, and especially if your child is an 11-16 year old girl (hormones seem to increase reaction severity in this group). But, once you're done, set it aside. Live your life.

Keep in mind: anxiety disorders kill too. No one likes to discuss it, but suicide is the third leading cause of death in adolescents, and anxiety is a significant risk factor for suicide. We have a responsibility as parents to achieve balance in our children's lives.

Unfortunately, balanced, responsible reports about food allergy deaths are as rare as the deaths themselves. If you do keep reading these stories, think about that word as you do so: balance. Does the source you are reading balance the presentation of the story with the general risk of death? Does it balance the privacy rights of the family with your need to know? Does it balance education about food allergy fatalities with education about anxiety disorders?

If it doesn't, why are you still reading it?

Follow me on Facebook or Twitter  


  1. You are the only blog that tries to present balance in this whole food allergy world. And I am sure you are attacked for it. It gets so wearying trying to educated those clueless about allergies while ignoring the hysteria (my perception) of food allergies from the other side. For every "Just give him a PB cookie" there's the "Prepared foods are Russian Roulette" and the ultimate trump card "..COULD DIE". I, like most people, don't want to hear that sometimes, people - children - just die. And the screaming on the internet about it doesn't help at all. Thank you for this post.. and I hope you keep being the sane voice in the wilderness.

  2. Yes, accidents happen and people die, and wallowing and worrying will do nothing to stop this. We can't save everyone. However, we, as the food allergy community can, and should, learn from experiences, the medical communities extensive research and arm ourselves with strategies to avoid tragedies like this. I find immense amounts of strength, and alleviate my own anxiety by figuring out ways that I can reduce the risk.

    Within the confines of consideration for the family's privacy and grief, we SHOULD be talking about what might have been done differently so that we can increase the chances that we'll keep the next kid alive. This is a sensitive issue, and be clear that I am not blaming anyone for this tragedy.

    It is the damn peanut that killed her, not anything else. Natalie's parents did everything they knew to do, and are NOT in any way to blame.

    AND we can use the opportunity to educate ourselves and improve our chances that we can keep our food allergic kids alive if they get exposed.

    From the news article I read, it sounds like the parents and the quoted doctors in the article, as well as most people I talk with, just don't know that the widely vetted current medical advice is that longer are you supposed to give Benadryl first.

    For those that didn't know, there was a comprehensive process where hundreds of allergy experts came up with new guidelines last year:

    Some of the key take aways:
    "The symptoms of anaphylaxis vary and can be difficult to recognize."

    "Epinephrine is the first-line treatment in all cases of anaphylaxis. All other drugs have a delayed onset of action."

    "The delayed use of the drug epinephrine has been associated with deaths due to anaphylaxis. Most of these cases are allergic
    reactions to peanut or tree nuts."

    "Antihistamines should only be used as a
    secondary treatment. Giving antihistamines instead of epinephrine may place
    you at significantly increased risk for a life-threatening allergic reaction."

    Putting it all together for me means that known exposure = EPI for my DIAGNOSED nut allergic kids. The worst that can happen is they will be hopped up for a bit. But if I wait to SEE the symptoms or trust that my 4 year olds will be able to express symptoms I can't see, it could be too late.

    My thoughts are with this family, and all of us dealing with this constant danger in our kids lives. We can't cure food allergies. But we can reduce the risk of exposure and possible death by impressing upon people how important it is to avoid the allergens, and making sure that EVERYONE is up to day with the current guidelines.

    If only one parent or doctor sees this comment, reads through the guidelines and updates their emergency plan, and a kid survives an exposure, my personal "nit picking of the situation" is worth it to me.

    Eden in Seattle
    Mom of peanut/tree nut/egg/sesame allergic twins

  3. Eden: I don't disagree with you. I just know that there are some families where the kids pretty often have very mild reactions that resolve with time and/or Benadryl. Those families will say that they cannot imagine always giving epinephrine for every exposure because then they'd be in the E.R. several times a year.

    The crazy thing about the guidelines you cite is that they draw a rigid distinction between acute and other allergic reactions. For non-acute, they state that:

    "5.1.8. Pharmacologic intervention for the treatment of food-induced allergic reactions

    "Allergen avoidance is the first line of treatment for FA, and use of antihistamines, as needed, remains the mainstay of managing (as opposed to preventing) symptoms of nonsevere food-induced allergic reactions."

    Here's the link to where that quote appears:

    But . . . holy *&^% . . . in the real world, there isn't a sign hanging off every allergic reaction clearly stating "acute" or "not acute"!

    My kids have had non-acute allergic reactions that have resolved w/o epinephrine nearly a dozen times. Just this last weekend my daughter had suspicious symptoms (not from food but from an immunotherapy shot for environmental allergens), and if I had an itchy trigger finger, so to speak, we would have done Epi and gone to the E.R. unnecessarily. But she was absolutely fine. I waited a minute or two, trying to look relaxed, but my radar was up, up, up. I was watching her like a hawk, pretending not to watch her like a hawk. Ugh.

    Now, my child has a "go straight to Epi immediately" order on her action plan for any known ingestion of peanut (thanks to an Ara h2 positive on the uKnow). So I guess she might have survived the exposure that little girl had, because I would have given her the EpiPen right away. Or would I have? I would now after reading that story. *sigh* Even though part of me wishes I hadn't read that story because I'm already plenty stressed.

    But there are the other reactions where you *don't* know what your child ingested. Was it peanut? Was it one of the other allergens? Does she just have a tummy ache unrelated to allergies? Is she having trouble breathing because of pollen, as usual, maybe exacerbated by . . . who knows what?

    I know you deal with multiple allergies and I don't need to preach to you about the crazy-making-ness of this situation. I know you know. I'm not disagreeing. I'm . . . I'm just commiserating. Food allergies suck, but we have to live with them as best we can.

    Elaine, Seattle
    mom of two kids with FAs, including one with peanut/tree nut

  4. Thank you for taking on this topic!

    I was particularly saddened when I first heard about this Monday morning - literally right after I had walked out of the allergist's office where my son's Allergy Action Plan sat waiting to be filled out. It was hard to breathe in that moment because I know that I likely would have handled the situation just as this family did. I would have noted the lack of symptoms, and I would have delayed administration of epinephrine with the hope that maybe my son had outgrown his peanut allergy. And my child would be dead.

    That little jolt of reality made me hug my kids closer. Then I went back to my standard approach. I looked for that line between reasonable concern and anxious demands for accommodations that are more about making me feel better than they are about actually keeping my son safe.

  5. I needed to read this today. I struggle daily, and especially after this poor child's passing, with that crushing fear and anxiety about my only child's well being. I do imagine him dead on the floor.... how would I survive? And my brain thinks, What can I read that will make me more prepared? And with the exception that I will be more likely to give him epi first thing, all I have learned from reading 50 million articles about peanut allergies is there is no cure and to keep doing what I have been doing while at the same time my anxiety level skyrockets. It isn't productive and it doesn't make my child any safer. It is hard not to wallow in the what ifs. It is hard not to say, "That won't happen to me because I would NEVER do XYZ." It is tough to ever let them out of your sight. But it feels fantastic to know that it is what other moms are going through and that they have found the courage to say enough is enough and that moms like you are reaching through that door to help pull a few of us out of the madness.

  6. Jacqui, that is what I call the unvirtuous cycle. Reading something horrible and then locking down our comfort zones even more with crazy precautions is a sure path to an anxiety disorder. And the web sites that use these stories all bat their eyes and say "Oh, but the good outweighs the bad and we're LEARNING from this experience!" While they rack up ad dollars.

    I often feel like the voice crying out in the wilderness, because it seems like the incentives of the entire food-allergy industry are aligned against me. I was so happy to see that FARE did *not* push this story this time.

    Go back and read the post I wrote a while back about why we don't put the kids who die from asthma all over our Facebook page. Or the kids who die in car crashes. It will hopefully help you to see the perspective here:

    I think it takes all of us together to say "enough." We have to reach way down inside ourselves and ask "what is it *I'm* getting out of wallowing?"

    I am glad you guys are all here as well...because it keeps me out of the weeds! I am always my own best audience. :)

  7. Thanks for the great article! I like how you view things a little differently so that my crazy over-reactive brain can slow down and realize we're doing the best we can to keep our kids safe. No need "borrow trouble" and create anxiety for myself from someone else's problem!

  8. Very well said! Natalie's story DOES make me a little more crazy, simply because it hits way too close to home (we eat at potlucks and DO things all of the time. We have given Benadryl when we've seen a few hives, and we've sat and watched to see if anything progresses).

    And you're right. We can't prevent everything from happening. And I don't want to drive myself crazy thinking that I CAN prevent every single thing, because that's not the kind of person I am. But then I feel like a bad mom because everyone else on the internet is saying that we have to control Every Single Thing.

    When my kids were preschoolers, they got hives all of the time (between three kids, we had allergies to eggs, dairy, and peanuts). We gave Benadryl All. The. Time. If we would have given epi every single time, we would have been in the ER every month, they wouldn't have needed it, the doctors would have looked at me as if I were crazy, and then when my kids really would have needed an epipen, it might not work, and/or the ER docs (who would know me by now) would dismiss our being there.

    I know that I won't hesitate to give epi if my kids have a known ingestion now, but the two big reactions that my little guy has had were not Known Ingestions (cross contamination one time at a restaurant, the other time could have been anything).

    I'm rambling now. Thanks for a post that needs to be read by all food allergy parents.


Note: Only a member of this blog may post a comment.