Saturday, June 30, 2012

Could, Can, Will, Always: What's the Difference?

It's Summer Olympic time! So, consider these three young (theoretical) athletes:
  • Tanya has been involved in gymnastics since the age of 2. At age 8, she participated in her first Junior National Championship, and at age 11, she won Juniors for the first time. Now, at age 14, she has already competed in two National Championships and placed 2nd at the last one. 
  • Ashley started gymnastics at age 10. While she has a great deal of potential and has been selected for her local club team, she has not yet been to a national meet.
  • Jordan likes gymnastics a lot and her parents think she'd be good at it. However, she has no history at all with gymnastics. 
Tanya, Ashley and Jordan's parents have all asked that their daughters be allowed to audition for the U.S. Olympic Team. Where should the coaches focus their efforts? 

Pretty obvious, right? We all know that this evaluation should definitely not depend on what parents think. While important, potential without results is also not enough. When resources are going to be committed, it's most important to look at how a child actually performs.

So what does this have to do with food allergies, you ask? Well...I'm back to my theme from last week: polarization and why 49% of non-food-allergic people think food allergy fears are blown out of proportion

Frankly, I was hesitant to touch Part II of this topic, because I know it will piss people off.'s the heart of what's wrong with food allergy advocacy. And really...if I won't say it...who will?

As with our gymnasts above, there are different degrees of food allergy history. Consider our three children again:
  • Tanya had her first reaction to peanuts as an infant and has been hospitalized several times from trace exposures. Two of those times, she required resuscitation and intubation. 
  • Ashley has had a reaction to peanuts that involved hives, vomiting and a sensation of throat closing. She has never been hospitalized.
  • Jordan has never had a reaction to peanuts. However, she was tested as a toddler and her test results showed sensitization to peanut protein, so her parents assume she has an allergy and that it's life-threatening.
Tanya, Ashley and Jordan's parents have all asked that peanuts be completely removed from their children's schools. Predictably, some parents react with hostility. And then the name calling begins. Parents who don't automatically support the demand for a food ban are labeled uncaring. Parents who ask for the ban are labeled overprotective.

How can two groups of people be so polarized? I think the difference comes down to the assessment of potential risk vs. demonstrated risk:

Food Allergy Parents Focus On
Potential Risk
These three children are the same. It doesn't matter how small the risk. The possibility of anaphylaxis and death is there for all three kids; therefore, everyone should jump through
every hoop, every time.

Non-Food Allergy Parents Focus On Demonstrated Risk 
These three children are not the same. There needs to be at least some consideration of how likely an outcome this is before resources are committed and demands are made on others.

Doctors say reactions are entirely unpredictable and that a mild reaction history can suddenly become life-threatening. At the same time, among their colleagues they say only some reactions reach the most severe level (~15%) and that a history of severe reactions and/or asthma is important when considering risk. In other words, a mixed message that involves both potential and demonstrated risk.

Let me stop to make something clear here. I strongly believe ALL these parents need to take their child's allergy, or possible allergy, seriously and be prepared to deal with a severe reaction. Epinephrine is life-saving and we don't know who will have a severe reaction. 

However, being prepared to deal with a severe reaction, should it occur, and expecting it to occur are two different things. And, asking other people to change their own behavior (not sending peanut butter to school) based on the expectation that a severe allergic reaction will occur, without any other evidence, is where the equation becomes problematic for many people.

Food allergy parents live in a world of "could happen." We've gotten comfortable living here. I think it's easy to forget that the rest of the world doesn't live here all the time.

And, for some of us, could has become can; can has become will; will has become always. It's easy to see how the phrase:

Allergies are unpredictable and a
mild allergy could become more severe

morphs into

Allergies are unpredictable and a
mild allergy will (always) become more severe

It's such a small difference, but it's the difference between being seen by others as credible, and being seen by others as over-reactive.

The best advice I ever got came from the mom of a child older than my own. She said to me "when you find yourself getting upset and telling others what could happen, go back to talking about what did happen. Just recounting your actual experience will be enough to get what you really need."

Mostly, that's been true for us. How does it work for you?

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  1. This is great advice! Requests in regard to our children's food allergies need to make sense. Tensions rise and we get labeled the helicopter allergy parents when we focus too much on what could happen versus preventing a recurrence of past reactions. Thanks for another great post.

  2. That is not my personal experience. In my experience with my child we started out with few precautions other than label reading. I didn't even know that non-top 8 allergens didn't have to be labeled and I didn't know that warning labels for cross contamination in food was voluntary. We learned about both the hard way, with our child having severe reactions. We didn't avoid events with food and then our child had multiple reactions, some serious, to being in situations where he touched some toy or surface that had been touched by someone who had touched his allergens. So, we learned we had to avoid certain situations and ask for hand washing and ask for food bans in his classroom (although not in the lunch room or elsewhere). We wouldn't have taken more precautions if things had worked out with us not taking them. The other FA parents I know in real life take fewer because their children haven't had reactions to cross contamination of food or surfaces.

    You seem to be saying all food allergy parents want food bans even if their children only tested positive on a test and haven't ever had a reaction. Most food allergy parents I know on line would tell those parents to go have a food challenge because food allergies can not be diagnosed by testing alone.

    You seem to also be saying that the non-food allergy parents are more rational and think food allergy accommodations should be individualized based on the history of the child and each child's needs. Where are those people? I don't encounter them often. What I see are people who are either scared of food allergies and supportive of my child or people who think I'm crazy and my child doesn't need any accommodations at all or should be home schooled. I don't hear too much, 'to each child's needs, based on each child's history'. Well, I don't hear it ever except from the parents of kids with food allergies.

    I do think Steph who commented above got the main point of what you were posting and I agree with that. Focusing on children's real needs vs what could happen is very important.

  3. I'm not saying ALL FA parents want food bans, or that all non-FA parents are rational. I'm just trying to understand the underlying reasons why half this country thinks we're wacko. I think people asking for more than they need is one of the reasons.

    Out of curiosity, how old is your child? At what age do you intend to drop the hand-washing and ban on food in the classroom?

  4. I am not sure what age I intend to drop the handwashing. I have thought about it and worry that if I drop it, it will be quite difficult to get it back. My son had a serious reaction including swelling, hives and throat constriction at an event where he didn't eat anything just a few months ago so I'm not there yet. That reaction showed me that residue on other's hands is still a safety issue. However, we go out in public all over the place and he hasn't had a reaction in public in years. He has has them when he was small, though. I don't know. It is a good question. I think it will also depend on when he can stop touching is face as much as he does which is a heck of a lot less than he did but still too often for my comfort.

    Do the actions of FA parents contribute to other parents thinking we are wacko. I'm sure. But even without that would people think we are wacky? Absolutely. Why is that? I think some of it is that people are so very into food in our culture right now. The idea that food could hurt you seems crazy. I remember the first time I was told by a child that she couldn't have cookies because she was allergic and I thought, "how can you be allergic to cookies?" because I hadn't heard of it. Also, the concept of cross contamination isn't intuitive. Even people I know who have PhDs in fields of science where the tiniest amount of cross contamination would ruin their experiments have not understood cross contamination when it comes to food allergies which I find baffling. (I'm talking wanting to use the same tongs on allergenic food and non allergenic food and not understanding why that wouldn't be safe type of not understanding.) If PhDs can't get it what hope do we have to convince everyone in our lives that this type of thing is a risk, that our child can't eat your cookies you baked, 'special', that your kid with pb in the webbing of her hands needs to wash with soap and water and get that pb out of the webbing before playing with my child or we have to leave your house (happened to us--I could see chunks of pb in the webbing of the child's hands and the parent took a wet cloth and wiped the hands, leaving plenty of pb in the webbing. This was after my child had a serious reaction playing with toys at this house on a day he didn't eat a thing.) At that point I can't worry about why they think I"m nuts because I'd be nuts to stick around in that situation. I can try to educate later but this person, very loving, very kind, very caring and smart still years later does not get it. She at least knows she doesn't get it. She is a dear friend but I know the limit of her understanding and try not to ask for more than she can understand. After my son's most recent reaction when he didn't even eat anything and landed in the ER I had one of my very best friends say, "Now I get it. I didn't understand before. I thought the handwashing was crazy but I see why it's important." I have had quite a lot of talks with her, explained things. She is one of the brightest people I know, also with a PhD but she didn't get it.

    I have given up on the idea of everyone getting it. I have given up on having all the other parents support me and my child. I can't care if they think I'm a big bitch (which I'm not). I can't care if they think I'm crazy. I only care if my son's accommodation plan in school is followed. They can think I'm the biggest bitchy nut they ever met if DS is safe. I'd prefer they not but I'm not going to put him in unsafe situations so as to not be seen as a nut.

    Anyway, I tangented way out in answering your very good question.

  5. This is on a tangent - but I think is worth mentioning and considering. As far as why 49% think we are wacko and/or not cooperative in accomodating those with food allergies - it is pretty much human nature to only think of oneself and his/her perspective - regardless of what the topic is. And for whatever reasons - it seems to be becoming a worse problem in our society - or at least that is what the media is reporting - that our youth have a sense of entitlement - and where is this coming from? The non-allergic are "entitled" to eat/bring in whatever they want - and the allergic are "entitled" to have a safe environment. Not sure what the answer is to appease both sides - but food allergies aside - I do find that the use of food in the classroom/curriculum is just as overboard as FA parents asking that it be banned. When I was in school - I don't recall having this much food in the classroom - food was at lunch time and in the cafeteria. Food wasn't handed out as a reward for doing good work or used as math manipulatives(my oldest's school is very bad about this). This is harmful not only from the FA perspective but also from the general health perspective - the obesity and diabetes rate are rising in kids - and will be kicking us all in the rear at some point (from the ripple effects of such health issues). But rather than see the "bigger picture" re: food at schools - people would rather focus on just the food allergy aspect and bicker and scream foul over a cupcake that somehow is the end of the world for either side.


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