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.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...
Immersive behaviors: interactions we would not choose to have if our child was not allergic to food(s).
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)
- Diagnosed only on the basis of testing - no history of reactions
- Hives-only reaction
- 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
- 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
- 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)
- Overnight hospitalization for a reaction
- Hospitalization of more than one day for a reaction
- 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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