The Summer Doldrums

I haven't felt much like blogging the last few weeks. Probably the summer doldrums. Perhaps you're familiar with them?

Some of it is the looming inevitability of another school year. Even though my son is starting his senior year, there are still stresses associated with the start of school. I no longer have the worry of food in the classroom, or appropriate accommodations, but the shopping lists does change as we consider school lunches, and inevitably key items are discontinued that made up last year's lunches.

Additionally, there's the running around to get medication letters completed. We had our FAHF-2 check-up at the end of July, and of course I forgot to bring the permission form with me. That means a round of faxing since our high school will not take a blanket letter, even though the dose is exactly the same as last year.

Looking back, I appreciate my husband's role as stay-at-home-dad and school bully much more than I used to. The paperwork alone is staggering!

One note: if you are working on a school 504 for the first time, I highly recommend my old community as a resource. There are endless examples of 504s on the site, as well as state-specific guidance. Unfortunately, the group had to move from the old home to this new one, due to spam issues with the last host. If you are looking for something specific and don't find it, just ask — it's probably on the old site.

The rest of the posting doldrums probably comes from having tried to save the world, one poster at a time, a few too many times this summer. I took a hiatus from ALL chat boards a couple years back because I find them stressful. Even the well-meaning posters often have a very different approach to food allergies, and everyone is very, very sure their way is the only way.

And then...of course...there's the next set of challenges looming in October. At our checkup, the head of the clinical trial chirped "so next time is the exciting appointment!" Not the word I would have picked. But, yes, perhaps it will be exciting too, somewhere under the terror. Oddly, as the summer of massive medication has gone on, my son has gotten more optimistic about the results of the trial as I've become more pessimistic. We have not had one wink of food-allergy trouble all summer...no mystery stomach aches or vomiting, no itchy mouth, nada. So, who knows — he very well may be right.

Travelling light with food allergies

The other thing I know that causes summer doldrums is the travel. We don't do much of it during the summer, but this year we did take a few days and visit my brother in another state. I have noticed an interesting phenomenon over the years that I've christened "The Circle of Safety." I seem to have a radius away from our house that doesn't stress me at all. Get beyond that radius, though, and all the worries come out. I look at maps to make sure I know where the hospitals are along the way. I go over the packing list obsessively. I ask my kid "do you have your medicine bag" enough times that he starts making fun of me in response. It takes two days to plan for every day away, which means I need a vacation from the vacation!

I know every mother feels this way. Every trip, every school year, every medical challenge is surmounted one step at a time. But August is that time after the trip and before the school year starts where we can pause at the top of the mountain we just climbed and see the whole range ahead of us. Especially, for us, the gigantic mountain labeled COLLEGE.

My son has told me this summer that he's thinking of a community college. That's o.k. IF (and this is the big if) he's choosing it because he wants the extra time to mature before he leaves home and not simply because it's easier than tackling the really scary mountain of residential food service.

But that's the hell of food allergies, isn't it? It's so intertwined with everything that there's no way to tease out the tendrils of fear that sneak into travel...school...life. Some days you gotta just keep walking and not worry so much about where the trail leads.


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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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