Wednesday, June 27, 2012

Show Me Your Allergy Papers!!

I listened in to the UKnow peanut test webinar at lunch today. (They have promised to post the presentation on their site later in the week.)

The information was mostly expected, but still very good. They had the research head of Thermo Fisher (the parent company) as well as a clinician who had implemented the testing in her practice with a great deal of success.

However, what struck me most were the questions once the initial presentation was over. The very first question asked was regarding Ara h 6. The inquirer didn't come right out and say he had heard the test wasn't reliable...but the question was clearly underneath. A couple questions later, we heard:
If my child is negative to Ara h 2 today, that doesn't mean he won't become allergic down the road, right? There's no guarantee?
The doctor with the clinical practice laughed a little when she heard the question. And then, she went through the reassurance tap dance that I'm sure she's done hundreds of times in her practice: yes, allergies can develop at any time but a passed peanut challenge generally means the child can eat peanuts. The test indicates the challenge will be low-risk. They'll take every precaution. They've never had a serious problem.

I was struck by the wide gulf between what the doctors and scientists were trying to communicate, and what the parents on the other end were willing and able to hear. As I've talked about in other blog posts, some parents do not really want to know if their child is allergic. Perhaps precautions are too ingrained. Perhaps "food allergies" have become a convenient repository for other anxieties. Perhaps no guarantee will ever be enough of a guarantee.

While I listened to rest of the presentation, I thought about this gulf between science and emotion. It also led to thoughts of the gulf between a provable allergy (science) and what we ask from society (emotion) as a result of an allergy. I thought about the social ramifications of this test. 

Right now, the test is being marketed to parents who presumably want it. But if they really don't want to know...but still want that 504 with all its jump-through hoops...who else might have an investment in the outcome of this test?

Schools. Lawyers. Even other parents who are angry about peanut-free-only treats.

Think about it. A couple of years from now, the "my child needs a 504" conversation may be countered with "have you pursued component testing?"

I have mixed feelings about all of this. There are some allergic reactions that will probably happen as a result of atypical molecular allergy patterns. That's unfortunate. On the other hand, those children will firmly know they have an allergy.

There's a whole other side of me that says "YES! Test EVERYBODY!" For too long, advocacy and safety efforts for food allergies have languished because so many people believe they have a food allergy when they don't. If there really is a way to become a card-carrying IgE-mediated, truly-at-risk allergic citizen, shouldn't those of us with allergic children support the effort?

No offense, but I would like nothing better than to say good-bye to this blog and all of you as the result of my child passing a test like this. Unfortunately, one of the first questions I asked was "if a child has had an in-office challenge and failed, is there any point to the test?" The answer was "no, no clinical reason." However, if proving his allergy and thereby having people take it more seriously was a social outcome, I would spend the money in a heartbeat. 

I don't know how this will all play out. I don't know much about 504 law and whether schools can require medical test results in exchange for accommodations. But my guess is, even if they cannot legally do so, there will be social pressures to pony up results before other parents are willing to place restriction on their own children. 

I am uncomfortably aware that the "show me your papers" portion of the Arizona immigration law was deemed constitutional by the Supreme Court this week. Can "show me your allergy papers" really be that far behind? 

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  1. I really don't think that parents don't want to know that their child isn't allergic. I think it's that those of us in the allergy community are extremely risk adverse for the simple reason that we know the disastrous possible outcomes of taking certain risks. My son is anaphylactic to peanuts and my daughter, who's younger, has never been exposed but has always avoided. She tested positive through skin prick testing last year and has an appointment for component testing next month. Even if she passes and moves to the food challenge, I know I'll be extremely tense during it. Thinking about giving either of my children peanuts produces a visceral reaction because of our past experience, strict avoidance, and emotional reaction to that food. To your other point, it's certainly not anybody's job to tell my child's doctor how to diagnose a peanut allergy, so I'd be livid if schools started requiring a certain test to prove an allergy. But for me it wouldn't be an issue...I'm the kind of person that has to have the information if it's available as long as the process of acquiring the information is safe.

  2. If it makes you feel any better, there has never been a death during a food allergy challenge. This test just *increases* the margin of safety.

    I'll cross my fingers that the test comes out well for your daughter. And, if not...then you know, and knowledge is always a good thing.

    P.S. We're ALL tense during food challenges. I talk a good game, but I'm horribly nervous before every one of them. We have another two days of them coming up in September and I'm sure it won't be a picnic.

  3. Well, that does make me feel better. Thanks!


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