Monday, May 7, 2012

The Food Allergy Anxiety Test

Today's post is a social experiment, FAB style.

After a few months of writing this blog, I discovered a startling fact: there are people in the food allergy community who really don't like my opinion. (Me? Bitchy little me? Shocking!)

Often, my hate mail has a common thread to it: you couldn't possibly have these opinions and really have a child with severe food allergies. The accusation comes out in various ways: talk about how their child is "more" allergic or my child hasn't experienced "real anaphylaxis" or I "don't understand the risk."

(How exactly does one get the "real allergy" badge from the allergy community if four epinephrine-requiring reactions and two clinical trials don't make the grade? I just recently had someone who knows my child's history ask whether my child had taken the uKnow peanut component test. We have not, but my guess is that my opinions would still be suspect, even with the piece of paper in hand.)

All of this has led me to a hypothesis: do we need to believe our children are "super" allergic in order to justify the extreme precautions we take? Does the severity of a child's previous reactions really correspond to the precautions a parent puts in place?

Below are a list of what I call avoidance and immersive behaviors:
Avoidance behaviors: precautions we take to stay away from people, places or things because of food allergies.

Immersive behaviors: interactions we would not choose to have if our child was not allergic to food(s).
Yes, I realize that the behaviors described below are not necessarily all extreme. And yes (so for God's sake, don't email me!) I realize that allergies can become severe after having stayed mild for years. But there has to be a limit to what we'll do or our children will go the other direction and end up with anxiety disorders. The tightrope between "safe" and "mentally healthy" lies somewhere in the day-to-day choices we make. So...

Take the Food Allergy Anxiety Test!

Is our choice to avoid and immerse ourselves really related to the severity of our child's past reactions?

Give yourself ONE point for each "yes" answer, unless more points are indicated in ()

Have you ever AVOIDED either entirely or partly BECAUSE OF FOOD ALLERGIES:
  • A food to which your child had never demonstrated a reaction and which your doctor has indicated should not be an issue
  • A food to which your doctor says your child is not likely to be allergic, but that you perceive as still causing symptoms
  • A food for which your child has passed a food challenge, but that you perceive as still causing symptoms (2 points)
  • A processed food with a safe ingredient label because "it just didn't feel right"
  • A processed food because of a concern/complaint you read on-line 
  • A food in a related botanical family to which your child has not demonstrated a reaction  (i.e., avoiding mango because of a cashew allergy), other than those your doctor has indicated you should avoid (1 point for each food you are avoiding or 2 points for each entire group such as "beans")
  • A birthday party to which your child was invited 
  • A play date  to which your child was invited  
  • A sleepover party  to which your child was invited (3rd grade or older)
  • A party with family or friends that included food (3 points for each relative's house you refuse to go to because of food issues)
  • Starting preschool at age 3 (Remember: this is only if the decision was partly or entirely related to allergies. If you can truly say your child was just not ready and it had nothing to do with allergies, you don't get the point.)
  • Sending your child to preschool at all (2 points)
  • Sending your child to school (i.e., choosing to homeschool) (5 points)
  • Taking your child to a playground, supermarket, movie theater or other public place even partly because of food allergies (2 points)
  • Letting your child attend a jr. high school outdoor ed program or other weekend
  • Overnight summer camp
  • Day-only summer camp (2 points)
  • Vaccinating your child (without your doctor's concurrence, as in the case of egg allergy/flu vaccine) 
  • Touching (allowing your child to touch) wrapped peanut products or jarred peanut butter (2 points)
  • A food challenge your doctor would like to do (3 points)
  • Scratch testing (SPT) your doctor would like to perform because you perceive it as dangerous (5 points)
  • Travelling on a cruise/internationally because of healthcare concerns
  • Travelling on a plane because of peanut contamination (2 points)
  • Local travel (2 points)
  • Full-time work (either choosing a part-time schedule or quitting your job) (3 points)
  • Date night:
    0 points = you've been on a couple-only date within the last month
    2 points = your last couple date was 3 months or longer
    3 points = your last couple date was 6 months or longer
    5 points = you've never left your children
  • Respite care:
    0 point = 3 or more individuals you can call/trust to care for your FA child in an emergency
    2 points = 2 individuals
    3 points = only one individual
    5 points = there's no one who's trained and who I could trust to care for my child in an emergency

Give yourself ONE point for each yes answer, unless more points are indicated in ()

In which of these ways have you IMMERSED yourself in the world of food allergies?
  • Visit, or have visited, an online chat board at least once a week for a year
  • Joined a local support group 
  • Visit, or have visited, an online chat board at least every other day for a year (2 points)
  • Paid a fee to join or support an online community (3 points)
  • Manage or moderate a local support group or online chat board (5 points
  • Have 5 Facebook friends that you met online due to food allergies
  • Have 10 or more Facebook friends that you met online due to food allergies (2 points)
  • Have 20 or more Facebook friends that you met online due to food allergies (5 points)
  • Talked about food allergies too much (your call) in social settings
  • Tweet about food allergies (2 points)
  • Read an article about a food allergy death within the last year
  • Googled the name of a child who died from a food allergy within the last year (2 points)
  • Emailed the parent of a child who died from food allergies or commented on a memorial board (assuming, of course, that you did not know the child IRL) (3 points)
  • Commented on a news article related to food allergies
  • Returned to comment multiple times to "defend your position" on an article related to food allergies (2 points
  • Taunted or ridiculed a parent online who had a different opinion than yours on food allergies (3 points)*
  • Villainized the peanut industry or peanut products 
  • Used your child's possible death from a food allergy to make a point in an argument either IRL or a chat board (i.e., "you should support peanut bans because peanuts could KILL my child")
  • Told someone else their child could die as a result of their choices (2 points)
  • Copied in a dead child's parent to win an argument (100 points - you know who you are)
  • Belonged to FAAN and/or contributed to FAI within the last 3 years
  • Attended a FAAN conference or participated in a FAAN walk (2 points)
  • Trained school personnel on food allergies (not just your child's teacher) (2 points)
  • Taken a job at the school (either paid or volunteer) to be close to your child (3 points)
  • Involved a lawyer or the DOJ/ADA in a dispute with your school (5 points
  • Purchased a food allergy-sensing dog (5 points
Which of these best describes your child's HISTORY of reactions?
  1. Diagnosed only on the basis of testing - no history of reactions
  2. Hives-only reaction
  3. Reaction(s) involving two or more body systems: swelling, vomiting, cutaneous (hives/flushing), wheezing or changes in breathing, faintness for which epinephrine was not given
  4. Reaction(s) involving two or more body systems: swelling, vomiting, cutaneous (hives/flushing), wheezing or changes in breathing, faintness for which epinephrine was given by you
  5. Reaction(s) involving two or more body systems: swelling, vomiting, cutaneous (hives/flushing), wheezing or changes in breathing, faintness for which epinephrine was given by a medical professional (EMT, school nurse, allergist, ER doctor)
  6. Overnight hospitalization for a reaction
  7. Hospitalization of more than one day for a reaction
  8. Intubation and/or resuscitation during a reaction by a medical professional

O.k., you're done! If you feel like being brave, post your three scores (they should look like this: 12, 23, 4) in the comments section. 

I'll go first. Man, I hate admitting it. There's a reason I had no trouble coming up with this list.

*Yes, the Bitchie Awards means I'm going to get these three points!

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  1. ((sigh)) My scores are: 10, 26, 4.

    Obviously I have more issues with immersion than avoidance.

  2. 7, 16, 5 (started out with a few 3's,but will be 4 if it happens again!)

    Had to swap FAAN with AAIA and/or Anaphylaxis Canada. Glad to see you're on twitter - I'll sent you a tweet that I made last week about your blog!

  3. 5, 11, 5 -- few comments: Avoiding A play date is not necessarily anxiety; sometimes there is a valid reason (some parents are idiots). Avoiding ALL or even MANY play dates is not good. And some B-day parties revolve entirely around food (e.g. they are in an ice cream shop or candy shop) And most important, the owners of food-allergy sensing dog should get way more than 5 points.

  4. Couldn't agree more about the dog ElleMo ... haven't heard any major food allergy organizations endorsing the idea. At one conference, the anaphylaxis experts said that it's counter-productive to have a dog - that we need to be educating our kids from an early age how to stay safe, not have them fear all public areas. And I'm a bit in the know on this one ... I've trained guide dogs for the blind! No way would I allow my son to depend on one due to his food allergies. The attention the dogs brought to us was not always supportive ...the last thing food allergy kids need is to have another reason to be singled out. Not to mention the issues we had balancing the needs of those with allergies to dogs!

  5. I'm conflicted about the dogs. Part of the inspiration for this test was that I had an exchange with a woman who posted a picture of their allergy dog, as if to say "SEE? My child really IS the most allergic she can be." I do think there are some people who get the dogs as a badge of sorts so people will give their child all the precautions they ask for.

    On the other hand, there are probably other people who are dealing with anaphylaxis from contact. We don't have this...I've never seen it...but I'm not willing to say it doesn't exist.

    If I had a kid who had to be resuscitated just from touching something, I'd probably have a dog - or anything else - too.

  6. 5, 1, 1

    Anyone care to dissect that?

  7. 26, 9, and 6.

    I have to say, here, however, that the avoidance measures that we take are 95-99% in keeping with our allergist's advice (and he's a good one). To an external observer that knows my family, we'd probably appear nowhere NEAR that avoidant, and probably much MORE immersive (you certainly know why... luckily I've avoided FB. LOL!). :D Because we have multiple FA and multiple allergic family members, too, those numbers are a bit difficult to parse. All of that to explain that the first number is probably artificially elevated. We don't avoid *anything* on that list without seeking information about risk in order to make the decision, and most of the avoidance is because of physician advice. I think that is a huge differentiator, myself. Avoiding things that your physician thinks are completely safe is much more indicative of an over-the-top response than someone who undertakes that SAME measure of avoidance on a physician's well-considered, educated recommendation. KWIM?

    And no, we do not have a sniffing dog, though we have contemplated one, primarily because our child, now nearing college, *does* seem to be one of the kids you're talking about with severe reactions from... well, occult exposure and no ingestion, anyway.

    I also have to add, here, that when the more normative life activities on list 1 have resulted in 3's, 4's, and 5's on the third list without need for overt ingestion of ANYTHING... well, avoidance doesn't necessarily mean OVER-avoidance under those circumstances.

    Finally, regarding list 3: since most anaphylaxis (even grade III or IV) is entirely self-resolving, whether or not a person has been GIVEN epinephrine is probably less telling than whether or not the person has had a reaction which included grade III-V features. Those are the reactions that *should* get epi, and almost certainly should result in observation in a medical setting.

    I consider some of those items much more telling than others, regardless of circumstances-- particularly in list 2. Initiating contact with a grieving family that we don't even know is pretty pathological. IMO. Belonging to MULTIPLE allergy organizations and/or support groups is also pretty telling unless this is a professional calling of some kind.

  8. I'm also incredibly tickled that your scores and mine are almost a perfect inversion of one another, FAB!

    I find that particularly amusing given how much else we have in common. :ahem:

    I don't have any trouble over-identifying as a FA parent/person, nor "over-sharing" particularly. I *do* have trouble opting "in" to a known risk when it's entirely discretionary to participate. I also tend to allow FA to have some INPUT into decision-making, but it is seldom a completely determining consideration. This is, however (again, IMO) a stance that one tends to adopt largely as a function of time since diagnosis, I've observed.

    I think it is important for FA parents to understand more about their own strengths/weaknesses in responding to this very particular parenting challenge.

    Frankly, that's probably true with any chronic condition in one's child(ren). Not always easy to avoid enmeshment/over-identification.

  9. I was not trying to make a judgment that any one of the items on the list was somehow wrong. The list represents what I perceive as precautions that not *every* parent of an allergic child would take, though.

    Remember that this post was inspired by someone who told me that my child was "less" allergic and that was the reason I was less afraid. There aren't enough results to really draw any conclusions, but I do note that at least a few people here have experienced relatively serious reactions, yet don't necessarily check a lot of items off this list.

    I just don't think one's precautions have much to do with reaction history.

  10. I haven't taken your test yet but I would guess that those who have had kids have the most severe of reactions may tend to be more afraid. Those who have kids who have had anaphylaxis from contact ingestion may tend to be more afraid. Those who haven't had their kids have serious contact ingestion reactions tend to poo-poo the idea of not going to an event because allergens are there. Well, doesn't seem so crazy once you have had to epi pen a child who didn't eat single thing but had ana anyway at such an event. And for the record, we still go to events but we are careful and some we will skip if it seems too risky.

  11. Gardengirl, I agree about the contact thing and I thought about trying to get that in there somehow. However, it's really hard to objectively measure the cause of anaphylaxis. (We've had situations for which we were never able to trace the cause.)

    The outcome (epinephrine, hospital, etc.) IS something that can be objectively measured, so it seemed like a better basis for comparison.

    ColoradoCarol, you're my hero. If I had an "8", my anxiety would be off the charts.

  12. Just coming back now to read posts. Yes, my anxiety HAS been off the charts at times. Usually right after a reaction. The "8" reaction happened 5 years ago so I try not to let it rule our lives. But it comes back VERY vividly whenever there is a story in the news about a kid who dies from food allergy.

    We have had a 3 reaction, a 5 reaction and a 6 reaction since that one, but nothing for the past 2+ years, probably because we take the precautions we do.

    But even with our reaction history, I think the whole peanut sniffing dog thing is stupid. Maybe that's because our worst reactions have not been to peanut. But it's probably because I think avoidance of the allergen is do-able without an alert dog.

    At this point, I try to keep my anxiety to myself as much as possible so as not to freak out DS. He has enough of his own anxiety because he clearly remembers the most recent reaction with ambulance rides, IV's, shots and overnight stay in the hospital.

    I try not to keep DS from doing anything he would otherwise do without allergies. But if he is going somewhere new or with someone we don't know that well, there is A LOT of preparation that happens. I would not hesitate to keep him home from a situation where I didn't trust the people who would be with him.


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