Kelly, no offense, but your response IS why my DD, now nearly 14, doesn't trust authority figures. Because they know all about her food allergies-- until they don't.
Her sensitivity is such that she really has almost died just from TOUCHING some surface that someone else (apparently? we can only surmise) has touched after loading his/her hands with a food allergen. She is VERY careful about what she touches, so the odds are good that we are talking about <10mg of food. An invisible smear is plenty. Very fast, very scary, very severe-- and no real idea of the 'source' of the allergen exposure. About half the time, there is little possibility for an ingestion of any kind, and this is definitely not in her head-- though she has had adults try to tell her to "just calm down" over what they know "can't" be causing her a problem. Even family has done it. I know that most of the experts in the field maintain that "inhalation" isn't a risk-- except that in her case, it really does seem to be. She's just as much an outlier among food allergic people as she is in terms of cognitive ability. Only about one person in 1000
with food allergies can actually identify with her completely. Her allergist, trained in one of the world's premier centers for food allergy, has only seen a small handful of kids like her in his career.
No way can she safely be "around" those allergens she's most sensitive toward. At all. It's not about emotional management and a need for her to be less anxious. She is right to be fearful when just being in the proximity of one of those things makes her asthma flare, her eyes burn, and her nose run like a faucet through all of her maintenance pharmacology. This is radically different from the common experience, management-wise, and we're aware that not everyone NEEDS to do things this way. She can tell you EXACTLY what that person munching out of her hand at a bookstore has touched in the last ten minutes-- she's
very aware and self-protective. She washes her hands almost compulsively and wears long sleeves so that she can pull them over her hands to open doors, etc. I've learned that most of the time, she knows better than I do; to my eternal shame, I have forced her to undertake risks that I thought were fine and she thought weren't-- and she was right.
So yeah. She has learned the signs for an adult that THINKS that they know all about it-- "well, you should just teach her to carry one of those pen thingies" (people can die even WITH epinephrine-- it's not a get-out-of-anaphylaxis-free card, and particularly not in someone with my DD's history) and "you should read labels, then" (uhhhhh... where to even start, here... that is SO inadequate for her since she has a long history of reacting to well-cleaned shared production lines) or our personal favorite "well, don't you know what you can't eat?"
The other thing is that we'd all like to get stickers printed up that say "anaphylaxis-- it's NOT what you think" because most of the time, her life-threatening reactions manifest first with diffuse, sort of hard-to-pin-down cardiovascular symptoms, which are incapacitating in terms of her ability to advocate and self-treat, but not obviously "allergic." Even people who THINK that they know what an allergic reaction looks like are not thinking about an epipen when she looks glassy-eyed and pale-- though that may be the only real warning sign before she collapses and arrests. I know. While well-intended, the more confident adults who are familiar with food allergies are actually the ones that pose the greatest risks to her, because they have to set aside what they "know" and UNLEARN some of it. It's awkward, though, for a child/teen to defy that authority.
We're all about "safe enough" which is mostly about reducing risk to the point where a reaction is only about 10% probable, and such that if one did occur, it would be relatively simple to treat and summon EMS to the location. Many factors impact those things, but basically the ones that elevate risk are-- many independent sources of food, movement + food, crowding + food, remote locations, porous/non-washable shared touch surfaces, and percentage of sloppy eaters (young children top that list). We go nowhere outside of our house-- even just for a walk-- without multiple lot numbers of epinephrine injectors, a charged cellular phone, hand-wipes (for on-the-fly decontamination) and asthma medications.
My child really hasn't ever been to sleep-away camp, to a group banquet, or to a sleepover. She's attended exactly three birthday parties in her life other than her own, and until quite recently, had been on an airplane exactly three times. I didn't drop her off at activities until she was nearly ten years old-- and mature enough to manage her own cellular phone. On the other hand, within a year or so, we would leave her AT HOME ALONE for short periods of time, which seems crazy, right? But she's safer with us or at home than anywhere else. I used to take her to work with me when she was a toddler-- into a lab filled with chemical, biological, and radiological hazards, no less. Still safer than daycare.
So I
look like a helicopter parent. I know. In our defense, we have nearly lost our daughter several times in her life, and in spite of extensive sleuthing never discovered what exactly went wrong. I, too, have a life-threatening food allergy (to shellfish) and my experience is NOTHING like the limitations on my daughter's life. I manage the way most people do-- avoiding risks in what I eat and not worrying too much otherwise, but carrying epinephrine just the same. I mention that just to note that our seeming over-protectiveness is about empirical data, not 'what if' types of fears, and to reassure anyone reading that I
do know what life with a "normal" life-threatening food allergy is like, and how one can live relatively normally, albeit without sushi or paella.
If we'd been that cavalier/reasonable with our DD, she wouldn't be here. We honed our management the hard way. There was a time in her life when
every outing was a 50-50 proposition for needing benadryl/inhaled meds to treat mild-to-moderate symptoms. It's still around the 10-20% mark. There is a reason we've responded with hypervigilance, and it has nothing to do with "wanting" to live this way, or with irrational fear-- but with extraordinary circumstances.
Similarly, I have an acquaintance whose younger DD is treated with great care w/r/t communicable illnesses...
due to the profound immunosuppression of an older sibling. All that to say... be careful what you assume when you judge other parents. None of us knows exactly what is behind the behavior we witness.
