Sunday, November 17, 2013

Magical Thinking and Food Allergies

So we got our FAHF-2 clinical trial email notification this week.

No, it's not the trial results. It was just a brief little note:
We are pleased to let you know that study participants have completed all study visits and we are now able to inform you of which treatment arm you or your child were part of (active or placebo).
[FAB's kid] was on active treatment medication.
At this time we can only provide you with your treatment assignment.  We are unable to share any information pertaining to other study participants.  Once the data is fully analyzed and peer reviewed, we will be able to share the overall study results. 
So...good. We weren't crazy.

The problem is that history is always written after the fact. While you're living your way through something, cause and effect are never clear. When people ask us whether the medication has made all the difference in my son's life, I have to just shrug and say "I don't know." There HAVE been some major changes since last winter:
  • He's now eating all soy (including soy cheese) without restriction. 
  • He's eating baked milk in everything without issue. (The only thing preventing us from introducing baked cheese is our own fear and busy schedules.) 
  • While I know some of you really do not like the concept, he is eating "may contain" for peanut without any issues at all, which has significantly increased the number of processed foods available to him, especially chocolate. 
  • He's started to expand his list of restaurants. While we're still not at the point (and probably will never be) where he can just eat something without asking about it, we no longer worry about cross-contamination.
What we don't know is whether we can attribute all that change to the medication. Is it possible that he had already outgrown soy, that he would have tolerated baked milk at this level without the medication, that "may contain" was always o.k. for him, and that we overreacted when it came to restaurants and cross-contamination?

Of course it's possible. Perhaps even likely. 

On the other had, we did see a measurable, really significant change in his tolerance to peanut. It is just as possible that the process that created that new tolerance also affected his response to these other allergens. But we'll really never know for sure, because the other allergens were not measured as part of the trial. 

It's so easy to see how food-allergy families can have such a diverse approach. The actual evidence we have for severity and tolerance may consist of a single reaction when our child was very young. In the years that follow, some people choose to believe their child's allergy has magically disappeared. Others may re-write it as a completely out-of-control, always life-threatening monster.  Our doctors know nothing. We know next-to-nothing. But, being human, we make up stories to fill the gap. 

Thanksgiving is just around the corner again. The spread of food always prompts the inevitable questions: 

How are his allergies? Did the study cure him? Can he eat what I brought now? Will he be able to take the medication again? Do you want him to do it if he can? Was it worth it? Do you think it worked? Will it work for others? 

Our family will be challenged to write the story that goes with this clinical trial. People really hate the very short story we've told up until now: we just don't know.

Everyone wants a definitive ending...even if we have to make it up. It's human nature. 

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