Friday, February 3, 2012

The Dark Side Of Exaggerating Food Allergies

DISCLAIMER: this is NOT medical advice. You should not EVER change how your approach your child's food allergy reactions as a result of anything you read on the internet. Talk to your doctor and develop a firm allergy response plan. (End of public service message.)

I have a mommy confession: I have exaggerated the severity of my child's food allergies.

When my son started kindergarten, we had the meeting that I'm sure many of you have been through with the school administrators to determine whether a 504 was needed. (We ended up with an IEP that was pretty much "you show up and run interference/bring a snack whenever it's required" - but that's a topic for a different post.)

We were asked to describe what happened when our child had a food allergy reaction. The answer to that question at the time was that it could vary a great deal. My son had experienced two "moderately severe" reactions (doctor's phrase) at that point, one of which resulted in us taking him to the hospital because he could not stop vomiting and was so congested with mucus that he was having trouble clearing it. However, he had never been given epinephrine. Never had trouble breathing (other than the mucus). Never had what doctors referred to as a "severe" episode (meaning resuscitation or intubation).

In addition, he had had several reactions that progressed no further than hives and/or vomiting. Did we tell the school that? Or did we keep it simple and emphasize the worst of all the reactions and say "potentially fatal" as many times as possible so they took us seriously?

I'm sure you know what we did. You probably did it too. No school in America is going to create an allergy plan for parents who are wishy-washy and say "gosh, my child will probably have what doctors call a moderately severe reaction most of the time." So, when they asked are your child's food allergies life threatening? I answered "yes."

It was right around this time I found a food-allergy community. As I mentioned in a previous post, the conservative groupthink of these communities can be overwhelming. I was taught the dogma:
  • All food allergies are potentially life threatening.
  • Allergies can change at any time, so past experience doesn't mean your kid won't die.
  • The biggest "word gun" gets the biggest response: "food allergy" is not as good as "anaphylaxis" is not as good as "life-threatening anaphylaxis". (There is even an acronym that's become en vogue: LTFA.)
These statements scared the crap out of me, especially after reading the stories of kids dead from food allergies. I found them start to creep into my conversation with other parents when I explained my son's food allergies. After all, they wouldn't take me seriously unless I did it.

Eventually, I had created a boogeyman in my mind. By repeating these statements over and over to others, my child's allergies became something completely fearful, unpredictable, catastrophic. It didn't matter that we had dealt with literally dozens of small reactions over the years, and even given an Epi-Pen four times. I felt helpless because my language and thinking about the reactions continually reinforced my powerlessness.

If you've been at this for a while, you've probably read the 2003 study that likened the stress from FA to that experienced by families with a diabetic child. However, you may not have seen a  2009 follow-up study was summarized in the AAAAI journal in the following way:

"The study results showed that on average, children with food allergy had the same or lower stress scores as kids who had no serious health problems. Mothers tended to report more anxiety and depressive symptoms for their children than the children themselves did. 
The study did, though, identify a subset of children who had increased distress scores. Children with negative attitudes about food allergy, and in older children those whose mothers had a higher level of anxiety, were associated with greater child anxiety." 

I can't help but think there's a connection here between the exaggeration we need to use to get results from schools, family and friends, and the internalization of that exaggeration that makes us think every food reaction is going to result in the immediate death of our child. 

I'm not saying we should hide the potential severity of these reactions. I'm saying that when we repeat and escalate the dogma, over and over, the anxiety becomes overwhelming. It's easy to end up with the equivalent of Mommy-Post-Traumatic-Stress-Disorder...but with the precipitating event being a figment of our imagination. 

The other thing to consider is that we're not doing our children any favors. This study (about the risks of driving - but also applicable to food allergies) talks about how teens approach risky behaviors. Its conclusion:

"...if it’s true that for some teens risk taking stems from feelings of doom rather than invulnerability, parents and educators might do better to focus on helping kids to formulate an optimistic and more long-term picture of their future, rather than waving news clippings of fatal car crashes."

How we model anxiety about food allergies for our children will have a definite impact on how they go through life. I don't want to be one of the overanxious mothers who passes my anxiety on to my child. I want to model a positive approach where allergies are to be respected, but where they are ultimately manageable

It's long past time that my thoughts and conversations with others about allergies start matching my goal.


  1. My mom was the ultimate opposite of you. She constantly forgot completely about my allergies and would often hand me a raspberry lemonade with real berries in it, or make me a birthday cake I couldn't eat. We'd have an event to go to and she would promise me that a sandwich was safe when it wasn't. This even occurred when I was a minor and didn't always have an epipen because my mom didn't think it a big deal. Family dinners would almost always involve celery cooking (severe anaphylaxis for me) and Worcestershire sauce (soy based). It got to the point that I would just not come which would then inspire my mom to think that I was avoiding/hating her. By the time I was 21, I had enough. I sat down with her to tell her how often I was taking benadryl and a variety of other histamine controls and tell her how often I had been using my epi pens just so I could be around the family.

    Now my mom knew food allergies were real, the doctor had been stressing the importance since I was 13, she had seen my face blow up like a balloon, my airways constrict, etc (but would just tell me take a benadryl and then go happily on her way). I can't stress how many nights I'd be alone after having a reaction that she would see the beginning of and then head out with the rest of the kids, taking benadryl as much as I dared and walking so I wouldn't fall asleep because I was breathing through a straw (felt like) and didn't want to pass out/die.
    She still doesn't get it and often forgets, but at least she tries to now include me on some of the meal planning. It's a step in the right direction. And my food allergies have calmed down a little (I can tolerate certain amounts of soy lecithin =which is in everything- and cooked berries/bananas/etc). But I don't tell her it has calmed down because I don't want her to fall back.

    I wish I had had helicopter parents who would take me to the ER when I was wheezy and in bad shape. I wish a lot of things. Yes, constantly emphasizing the death thing around your kids may stress them more or they may just know that mom is stressed which then makes them stressed. But if the fear of a bogey man reaction keeps your kids safe, I'm sure that later in life, your kids are gonna thank you for your diligence. I know I would have.

  2. OMG, Katie, that's heartbreaking! I'm so sorry you had to deal with that. And you're right - my blog is for parents who stress too much, but clearly there are parents out there who do not stress enough about food allergies.

    One note though: we use Lea and Perrins all the time. The ingredients declare fish but not soy:

    You might try this brand if you haven't before.

    1. I know you wrote this a while ago. I just stumbled on it and wanted to thank you. It was helpful to read, as I definitely err on the side of catastrophic thinking and my anxiety about my son's nut allergy can get overwhelming at times. I think your post does a great job of bringing perspective to the risks.

  3. They have recently changed their recipe. 5 or so years ago, Lea and Perrins was soy based. My husband and I were delighted at the change :D A lot of condiments are changing. Now we can find canola based mayonaise as opposed to making it, varieties of spaghetti and other sauces. It's really kind of nice. Costco's brand of "Disney" chicken nuggets are also soy-free. It is amazing the changes that happen as increased awareness occurs.

    I mostly wanted to post that to reassure the parents that stress too much that that is ok. And that later on in life, your kids will thank you for your diligence.

  4. Thank you for your post. I've just now discovered your blog and am so grateful. Our almost 1 year old has just been diagnosed with peanut and egg allergies and we are still trying to wrap our brains around it. I know information and education is power but sometimes it feels so awfully overwhelming and the pit in my stomach grows larger and my blood pressure skyrockets as I read articles, even those on the FARE website. I've tried to connect to other moms out there but I feel like the anxiety is multiplied in these forums. I almost cried in relief when my best friend offered to read the Peanut Allergy answer book so I would have someone (relatively even keeled) to discuss it with. I'm going to continue reading your archives and just wanted to say how much I appreciate your viewpoint. It's helpful to know that there can be a middle of the road approach to helping our little one manage her food allergies and that we will get there.


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