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Five Things Parents of Allergic Children Want You to Know

Andrea is our local analphylaxis support group leader. She also provides coaching to  allergic individuals and for parents helping their children navigate life with food allergies. I’ve asked her to share her opinions with us about the perceptions of others regarding parents of food allergic children, which seems to be quite a hot topic lately.

Please let us know your thoughts too!

-Jennifer

Bio: Andrea Shainblum is the President/CEO of Allercom Allergy Consulting, Inc.
Allercom helps hotels, restaurants, event planners, hospitals, schools, daycares, and camps reduce and manage allergy risk. In addition, Andrea volunteers her time as the leader of the Montreal Anaphylaxis Support Group, which she founded in 2003.

Five Things Parents of Allergic Children Want You to Know

You’ve read about these topics in the news.

“Allergy hysteria”
“Peanut fears”
“Anxious allergy moms”

Most recently, there have been studies suggesting that positive skin scratch test results to allergens are not sufficient to diagnose allergies, and that many are false positives.

All of the above have been widely filtered through, and propagated on the internet — particularly on blogs and social media sites. The studies suggesting the gap between positive allergy skin scratch tests and clinical symptoms have been used to fuel public critiques of measures taken to protect allergic children. And it seems, if you’ll pardon the pun, that nobody is immune; a well-intentioned relative, who shall remain nameless, e-mailed me when one of the studies was released, to inform me that my allergies were probably not real after all.

How lovely that would be.

As an allergy support group leader, coach and consultant, I often encounter the negative effects of these faulty interpretations – from the parent dismissed as demanding by relatives who insist on serving nuts during the holidays, to the friend who claims that minimizing stress or trying the latest diet fad will make the allergies vanish.

In fact, the reality is far more complex. What the studies are telling us is no surprise at all to those with allergies. Allergists and allergy support group leaders are well aware that a positive skin or blood test must be correlated with a clinical history of reactions in order to diagnose an actual, honest to goodness allergy. In the case of food allergies, the gold standard is a food challenge carefully performed by a licensed allergist. Otherwise, allergists run the risk of over-diagnosing based on false positives. Simply put, this is not news. The newer studies simply reiterate the importance of confirming positive test results with follow-up testing and/or a full history taken by an allergist.

The claims of “allergy hysteria” and anxiety aimed squarely at the parents of allergic children are even more insidious – not only because they’re based on misinterpretations, but because there’s no way for parents to combat the claims without sounding upset and, well, anxious. And who wouldn’t be upset on being told that their child’s documented deadly allergy is overblown, or worse, all in their heads?

Parents of children who have equally invisible and severe conditions, such as diabetes or learning disabilities, are generally speaking, not met with public hostility. However, for some reason, allergy has become a targeted condition. I can’t fathom why this is the case, but as an adult who has lived with allergies since childhood, and who consults with those who live with and try to accommodate allergies, I do know how these misinterpretations negatively impact allergy sufferers and those who care for them. With this in mind, I’ve prepared a list of five key concerns and messages that many of the parents of allergic children I’ve known often express, in response to some of the critiques floating out there on the interwebs:

1. So, you believe that I’m putting my little princess up on a pedestal and asking for special treatment when I request that eggs not be brought to school. It’s helicopter parenting, you say? Well, there’s a back-story here. It involves a night spent in the emergency room watching my child being resuscitated after turning blue and swelling up to the point of unrecognizability due to anaphylaxis. The cause? A single, tiny bite of another child’s egg sandwich.

2. Ah. But you still don’t believe that my child’s allergy is that severe. Surely, I must be exaggerating, or perhaps even making it up? Well, that’s not your call to make; it’s that of the allergist, based on my child’s test results and clinical history. Unless you’re willing to shadow my child at school and both witness and treat a life-threatening allergic reaction by injecting epinephrine, please don’t judge.

3. Oh – you do believe that my child’s allergy is severe. Well, that’s a relief. But what, you say? You don’t believe that schools should pander to the special needs of the minority? Oh. Really? I’m afraid we’re entering Star Trek territory here – as in Spock’s Vulcan adage “The needs of the many outweigh the needs of the few or the one.” Let’s look at this, shall we? Put into effect, what this means is that special accommodations need not be made in schools, or indeed, in society. (School being a training ground for adult life after all) I wonder — would you protest against wheelchair ramps? Individual Educational Plans (IEPs) for students with dyslexia or math LDs? Why, then, protest against accommodations needed to keep severely allergic kids safer? Empathy is arguably the root of a functioning, kind society. How about modeling compassion by explaining to your child that this is one way to help take care of others? A far better message to convey to children in this era of rampant entitlement, don’t you think?

4. It’s an inconvenience to your child, and to the other children who love their peanut butter and jelly sandwiches? I see. Well, it’s clear that peanut butter is a cheap and convenient food that kids love to eat, and that not being able to send it to school is an inconvenience. That said, I’m not trying to inconvenience you or your child; I’m doing something more elemental and urgent – trying to ensure that my child returns home at the end of the day. Put yourself in my shoes. Since my allergic child is required by law to attend school, I’m going to do all I can to ensure his safety, and I expect the educational system that enforces his school attendance to help me do so. If the allergy is to trace amounts, I expect that the allergen will not be served in order to avoid an allergic emergency. Not taking these measures is tantamount to relegating my child’s well-being to the whims of fate. Unless, that is, you expect parents of all food-allergic students – 6-8% of all children in North America – to home-school.

5. Food allergen bans promote “a false sense of security” or “don’t teach kids to deal with the real world.” I left my favorite clichés for last. The term “ban” is admittedly a bit extreme; instead, many schools simply ask for parent cooperation, and monitor the lunchrooms. Whatever this measure is called, however, it’s one important way to reduce allergy risk in a school (or camp) setting. Note that I haven’t said “eliminate allergy risk” – that’s not possible. But given the fact that small children put their hands in their mouths, and that even older children and teenagers tend to take risks that adults do not, it’s incumbent upon schools to minimize allergy risk as much as possible. Because an environment where the allergen isn’t served is less likely to be covered in the stuff, right? As for the real world, I have yet to meet a parent who hasn’t taught their allergic child to manage their allergy or to prepare to manage it as an adult. But in the interim, these kids need to stay safer so as to reach adulthood. Allergic reactions may still occur from time to time despite best efforts, but they’re likely to be fewer, and possibly less severe, if precautions are taken to minimize the risks.

It’s a stark reality that allergy prevalence is rising among children and adults alike. Until the cure for allergy is found, we will continue to be bombarded by studies of all kinds as allergy researchers continue their important work. Members of the public will also surely continue to express a range of opinions about allergy, its causes, its treatment, and its accommodations. However, for those with severe allergies, this is not a matter for debate; it’s one of life and death. Given this fact, what those with allergies most often wish for, in my experience, is the ability to minimize risk and live life to its fullest, whatever it takes. Sometimes this means depending on others to help, or at least, not hinder. After all, compassion and becoming better educated about allergies takes less time and effort than does posting critiques of allergy sufferers.

©2012 Andrea Shainblum

24 Comments Post a comment
  1. I have two sons with food allergies. The older is almost 4 and has multiple allergies (the list is huge, really). Thankfully, he so far is not sensitive to trace amounts of any of his allergens–at least, not so far. Though I should qualify that: he has never had a life-threatening reaction to any amount of allergen, trace or otherwise. I have no idea how trace allergens affect him internally, but there is no instant and obvious reaction.

    That said, he is very aware of his allergies. We take food for him everywhere we go. At buffets I just hold up a bag of food and say, “He’s allergic to everything,” which is almost true–he’s allergic to everything that would make a well-rounded meal. He won’t eat enough lettuce and other safe veggies to make a full meal, and a preschooler really needs more protein than he can get from just veggies. So I have never had to pay for him to eat at a restaurant. I can’t wait until he’s old enough to eat a big salad and add a little something from home! I plan on homeschooling, so school isn’t an issue.

    I was rather appalled at Juliette’s comments, however, I could understand them to a point. The mother who raised such a fuss at her church could have found some other way for her child to serve others. I mean, I like to have my kids help with the dishes, but if I had a child that was sensitive to the dish soap I use (unlikely, since I use an all-natural one, but supposing I didn’t) and broke out every time he touched it, I would exempt them from washing dishes. Maybe I’d have him dry them after they had been rinsed and put them away. Or maybe I’d have him sweep the floor. There are other things that can be done.

    But I can totally understand a peanut-free classroom. I am so very thankful that my son has never had an anaphylactic reaction to anything, but he does have asthma-like reactions to some things. He generally can pick up on whether he is allergic to something or not (by the reaction he has in his mouth), so I am able to test foods by giving him a little bit and having him tell me if he is reactive to it or not. The severity of his reaction is directly proportional to the amount of allergen ingested–and often ingesting too much will cause him to vomit, thus reducing the amount in his body significantly. But we did spend a couple of hours in the emergency room one night because he had ingested an allergen and we did not realize that he was allergic to it (thanks to a false negative test). So I have a concept of what a parent must feel when dealing with a severe anaphylactic reaction, and it’s not something I would wish on anyone.

    My brother used to have a number of allergies. He outgrew them all by puberty, and none were severe, but they made him very itchy. I remember someone chiding my mother for making him eat such a limited diet. “Oh, just let him have whatever. You’re being too restrictive.” He heard it and piped up, “No thanks; I don’t want to itch.” If someone who merely became itchy when he ate certain things could feel that strongly about it (and he was school age by then), remember that very young children do not have a voice to speak for themselves. I would rather be the overly cautious parent and watch my child grow up, than to be afraid of hurting someone’s feelings and end up with a dead child!

    Like

    November 30, 2012
  2. FAB #

    I spot a cupcake queen…

    http://foodallergybitch.blogspot.com/2012/02/why-cupcakes-trump-children.html

    (Or king…”Juliette” sounds just like a guy named David who spends his time trolling food allergy blogs, making trouble.)

    Like

    April 14, 2012
    • Hee hee – love your blog! So glad to learn about your site!

      Like

      April 16, 2012
    • Barbara Graddy #

      As a mom of two children with food allergies, I can totally relate to this blog. This is a great blog. Thanks for posting this.

      Like

      May 31, 2012
  3. Edie R #

    Wow, I’m a little shocked that people can have such rage against children who have allergies and their parents. I am a teacher and have seen students who have allergic reactions. It is very scary for the student and everyone. I don’t feel any FA parent is asking to much when it comes to the well-being of a child. Acceptance is a virtue to little recognized. It not entitlement, it is life or death. Big difference. PB & J verses a life. Easy choice!

    Like

    April 10, 2012
  4. Karen Neill #

    I must say, reading this almost made me weep. My daughter is allergic to multiple foods (she can currently eat 20 foods, and is allergic to 20 others). I hav recently had a major shift in my allergy profile, and spent a month in hospital with daily partial anaphylaxis, unrecognized by a slew of doctors (and myself!). I almost had to take an epipen last week as I had a swallow of camomile tea- another new allergy to add to the list. One story I must share though, is the MARVELLOUS response we got from my daughter’s daycare last week. When we asked the head teacher to confirm which day the kids were bringing in eggs to decorate so that we could keep her home on the correct day, she immediately said “Oh NO, that won’t do. We’ll tell everyone not to bring in eggs! We have plastic ones they can decorate! You shouldn’t have to keep her home!!!!” It’s hard to express how wonderful that felt, that they wouldn’t consider excluding a child, and how cquickly they came up with a solution. I understand living with the anxiety, and it takes so little compassion and understanding to make it better. Thank-you to all of you who get it.

    Like

    April 10, 2012
  5. Carla #

    Juliette’s comments are ignorant and insulting to parents of FA children. It is obvious that she does not have a child suffering from this condition. Obviously her right to send her child to school with a peanut butter sandwich outweights my child’s right to feel safe in school. Real compassion. I sincerely hope her child is not in shool with mine. I wish I did not have to buy $7 sun butter, but unfortunately I do not control the pricing of the specialty items my child with 6 FAs requires.
    I do not expect the school to ban the 6 foods my child is allergic to, but I do expect compassion and cooperation from those around my child. Being in proximity to the foods is like playing with a loaded gun, which no one would let their child do. But I am required to send my 5 yr old into an environment that puts him at risk. The cooperation of other parents does not give my child a sense of entitlement, but a sense of INCLUSION. It allows him to have friends, play and socialize with them rather than be ostracized and separated from his peers. It’s hard enough to have to explain to a 5 yr old that he has to skip field trips, activities, birthday parties because he could go into anaphylactic shock. But it was truly heartbreaking to teach him, at the age of 3, to use the epipen. He understands that he will never have a “normal” life. He does not feel entitled. He just wants to play with his friends, without fearing for his life.
    And Juliette, by calling it emotional blackmail, it is obvious that you have never watched your 6 mth old baby struggle to breathe because someone as ignorant as you could not live without the food he is allergic to for the half hour they were in his presence. That, to me, is the definition of selfish. My sincere wish for you if that you never have to experience anaphylaxis in someone you love, which unfortunately is the only way you can understand just how offensive your comments are.

    Like

    April 6, 2012
    • Exactly, Carla. Thank you.

      On the topic of not understanding until it happens to you, this article about columnist and “Nut Allergy Skeptic” Joel Stein is but one example of what it’s like to learn the hard way. Not that anyone would wish such a condition on a child or family. It’s just that allergy can happen to pretty much anyone, unfortunately. As a result, we — as a society — must learn compassion and empathy for others. ttp://www.time.com/time/magazine/article/0,9171,2007417,00.html

      Like

      April 10, 2012
      • Exactly, Carla. Thank you.

        On the topic of not understanding until it happens to you, this article about columnist and “Nut Allergy Skeptic” Joel Stein is but one example of what it’s like to learn the hard way. Not that anyone would wish such a condition on a child or family. It’s just that allergy can happen to pretty much anyone, unfortunately. As a result, we — as a society — must learn compassion and empathy for others. http://www.time.com/time/magazine/article/0,9171,2007417,00.html

        Like

        April 10, 2012
    • Also, something more recent about a family that did try to be flexible in a school environment, with a resulting allergic reaction. I wonder if this is the kind of frightening outcome allergy-critics are willing to accept. http://zumfamily.blogspot.ca/2012/04/food-allergy-nightmare.html

      Like

      April 10, 2012
  6. Juliette #

    It’s the parents, not the kids with the entitlement. Sorry if that was not clear.
    As far as empathy and compassion, do you feel any for families who do not qualify for free lunch but cannot afford the $7 a jar for sunflower butter? What about milk allergies? Does that mean no one in a school can have milk, cheese or yogurt?
    My church used to provide food for a homeless shelter on a monthly basis. PB and J sandwiches and trail mix were requested. Sunday school kids helped with preparations. That was until a FA mother insisted they stop using peanut butter because her child was excluded. She raised such a fuss that they stopped the program. The kid could have helped in the library or stayed home the one day of the term her class was involved. So because of one child, this food to people who rely on social services to eat is not provided. Yes, that is real empathy.

    Like

    April 4, 2012
    • Karen Neill #

      What a ridiculous response. “because we can’t include peanuts in order to include this child, let’s cancel it altogether just to prove a point”. How Christian of them. What? A more compassionate responce could have been “Sure, we can do that. Sorry guys, no PB and J with your food. What else might work for you?”.

      Like

      April 10, 2012
  7. Sadly, this all sounds oh so true….

    Like

    April 4, 2012
  8. Wow, Juliette, if a peanut-free table would take care of things, don’t you imagine people would leap on that option? The problem is that for some kids, a little peanut dust can shut off their airways. One peanut-free table in a lunchroom simply won’t reduce the risk.

    It is the rare parent who takes pleasure in inconveniencing others, and hardly anybody wants their kid to be identified as the one for whom an unpopular rule is instituted. Nobody makes the request that a school go peanut-free unless they absolutely HAVE to.

    I know it’s hard to believe that something so minor can cause such a severe problem. But denying that reality in the name of not making some kids “think the world revolves around them.” is a deeply ignorant stance to take. If it were your kid, and there was no other way to keep them safe at school, wouldn’t you hope other parents would find it in their hearts to help?

    Like

    April 3, 2012
  9. Juliette #

    I also wish you FA parents could find another technique besides emotional blackmail. Must be nice to have everything about you or your child.

    Like

    April 3, 2012
    • What techniques would you use to keep your child safe if s/he was severely allergic at trace level? What if you had indeed tried them and the techniques failed, leading to an ER visit?

      Like

      April 3, 2012
    • Chantale (@ladyofthelake29) #

      Impressive how keeping our offspring alive, safe and healthy (which most mothers are biologically hard wired to do) is construed as emotional blackmail.

      Like

      April 3, 2012
  10. Juliette #

    Are you teaching your FA child compassion and empathy for others or does this just apply to peanuts?

    Like

    April 3, 2012
    • I’m fortunate that my child is not allergic to any of the major allergens. However, I am. My examples were those of the many people with whom I’ve worked.

      Compassion and empathy are essential elements of any child’s emotional toolkit, with or without allergies, I’m sure you’ll agree. And peanuts are not the only major allergen. However, they are very, very potent allergens in small quantities, which is why we hear a lot about peanut allergies in the news.

      Like

      April 3, 2012
  11. Juliette #

    The difference with allergies and diabetes is that the latter does not demand that other people change their eating. I do not support all out peanut bans in schools because one or two people cannot dictate the behavior of 200 or more people. Peanut free tables, absolutely, and appropriate hygiene afterwards. Otherwise, the child with allergies must feel that everything is about them. If a child is in a wheelchair does that mean the entire class cannot use the whole playground or if someone has bee sting allergies does that mean the class cannot go outside? Where does it stop?

    Like

    April 3, 2012
    • Certainly, it’s a challenge to accommodate those who are allergic at trace level. Without question. However, I’ve never encountered an allergic child who has felt the sense of entitlement you describe. Not once. If anything, allergic kids I’ve known have been taught to be thankful for the efforts of others to help keep them safer.

      I hear your argument and concern, but let me ask: Given that in most countries, school attendance is legally compulsory, and that a child with trace level allergies may not be well protected even with basic hand hygiene, what would you suggest? If it is home schooling, how would this be implemented by families without the resources to do so? Is avoiding bringing in a given allergen that much of a hardship? There are only a handful of major allergens that cause most reactions, and I’ve never heard of a case where they were all excluded from a classroom. Many thanks for your comment.

      Like

      April 3, 2012
    • Chantale (@ladyofthelake29) #

      “Otherwise, the child with allergies must feel that everything is about them.”
      You make it sound that there is something wrong with having a child who is self aware. Who is conscious of the world around them and the impact that it could have on their life or on other’s life. They will likely lead a life with much more compassion, empathy for others and respect for their fellow human beings.

      “If a child is in a wheelchair does that mean the entire class cannot use the whole playground or if someone has bee sting allergies does that mean the class cannot go outside? Where does it stop?”

      If a child is asthmatic will you smoke in their face knowing the danger? The child should not be isolated, and we should be teaching our children compassion for their classmates and try to integrate them (in the case of the wheelchair) in the activities, or look out for their well being in the case of bees or allergies. It’s beyond respect, it’s called treat others the way you would want to be treated.

      Like

      April 3, 2012
  12. selenarae #

    I, thankfully, have not encountered these sentiments, yet, and that is probably because my daughter is only 3 and not in the school system and I am surrounded by supportive mothers in our playgroup, but I have seen these kinds of sentiments elsewhere and I think this is a great article. Our only aim is to keep our children alive and well.

    Like

    April 3, 2012
    • Thank you for your kind comments! Yes, that’s the bottom line. This is not about helicopter parenting or entitlement. This is about very real families with children who have very real conditions. It takes a village to raise a child, and I’m pleased to say that most people I’ve met have been very accommodating and willing to learn about allergies.

      Like

      April 3, 2012

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