Friday, June 22, 2012

Are We Afraid to Let Go of Food Allergies?

I'm disheartened.

A couple of weeks ago, I sunk a lot of time into researching, and then explaining the value and limits of component testing. I was so excited at the end of my research because I realized this test has the potential to change the lives of thousands of families who believe their child has a food allergy when they really don't.

Think about it! 10% of kids test positive to peanuts, but only 1-2% have a demonstrable reaction. Why in the world aren't those families who have never experienced a reaction jumping up and down in joy and rushing out to get this test? 

realize it's not cheap, so clearly money is a factor. But the reason I'm disheartened is that I saw the first of probably many "not ready for prime time" type messages make the rounds of the chat boards over the last couple of days. It involved one case where a child had a reaction to peanut despite a low Ara h 2 measurement

The boards were peppered with words like "disappointing" and "researchers don't seem to know a whole lot" and "the test cannot tell you if you are safe from anaphylaxis."

All this on the basis of one child, one reaction.

YES, this is a test, and tests are not perfect. Yes, there are exceptions to every test. Yes, a food challenge will definitely be required if the test shows low Ara h 2. Yes, some kids will have the test done, show low Ara h 2 and still fail a challenge. But does it really make sense to sit on the sidelines, waiting for the test to be perfect, and potentially miss out on years of worry-free childhood? 

Honestly, it seems to me that people are looking for reasons to avoid this test, to talk themselves out of it. There was such a palpable rush of relief from so many people. Yay! We don't really need to do it yet!

Why? Why would that be? I have asked myself over and over again this week. Are parents really so phobic about the idea of a subsequent food challenge that they are willing to just bypass the test altogether, rather than experience a small risk for a major gain?

It makes you start to wonder - which is the real disease, the phobia or the allergy? If a child has truly never experienced a reaction to peanut, yet the mom is so phobic that she won't even consider a food challenge in the event of a pass on component testing...which disorder is really the bigger issue for the family?

I know it's scary. We've been through at least a dozen challenges. My son has now failed three of them. It's not a pleasant day. But a curious thing has happened as a result: we no longer let the anxiety master us. A research study that examined food challenges and anxiety showed the same thing: pass or fail, the anxiety of the families involved was reduced after a food challenge.

How we think about these tests, talk about them, post about them on-line  all can add to or reduce our anxiety. We can talk ourselves out of even the smallest risk, and of course it's easier when others around us are also looking for ways to talk themselves out of risk.

Don't do it. If you have a child with a peanut allergy who's been diagnosed solely by test results, don't talk yourself out of the test because you dread the challenge. Don't live like this another day.

I read a crazy science fiction story as a child that left an indelible mark on me. The premise was that a ship had crash-landed on a planet with very high levels of radiation. The survivors of the crash all aged at a dramatic rate as soon as they landed, but still managed to reproduce. Their descendants also had shortened life spans - just 10 days from birth to death.

Those ten days were spend scrambling for resources; in particular, trying to obtain caves with better shielding so the tribe who won the battle could live lives a few hours longer. But three young warriors put their heads together and talked about how stupid and pointless it all was. They had heard a rumor that the ship that brought humans to the planet in the first place was still out there somewhere. Didn't it make sense to take a risk and strive to locate the ship, rather than dying in pointless skirmishes?

At the end of the story, they do find the ship and manage to get inside. It's shielded from the radiation. And, in that moment, they look at each other and realize that the rules have been completely reset and their lives have essentially started over.

There are so few of those types of opportunities in life. Component testing could be that kind of a moment for many families out there.

So many of us would give anything to be able to say "What do we do, now that he's not allergic?" It feels like mockery that others who really have that opportunity seem to be rejecting the chance.

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1 comment:

  1. FAB, I so appreciate your well-considered, well-researched posts on this topic, and I do think the FA community needs some tough love on risk management strategy.

    We were very excited to take the test. Daughter had only one small reaction back at 18 months (OAS + hives), and we thought she might outgrow, as her RAST numbers were getting soooo low. But, then, her numbers shot way back up when she sensitized to grass and birch. For years, I wondered whether maybe she had outgrown the "real" allergy and was now all or mostly OAS to peanut thanks to pollen x-reaction.

    Got the uKnow results back about two weeks ago. Not what I'd hoped for -- daughter has high Ara h 2, and we were bummed. But I'm okay now. No . . . not just okay . . . I feel *better* than before we had the test, because constantly wondering whether you are needlessly restricting your child and second guessing yourself (and all those folk you *know* think you're overprotective just compound the feeling) is enough to drive anyone crazy!

    I had a few days between the "executive summary" phone call of the test results and the official meeting/debrief with the allergist to digest the information and think very long, hard, and systematically about our risk management strategies in light of the current data on thresholds and what trace amounts are generally detected in foods with advisory labels.

    So . . . after meeting with our allergist, we walked away with new clarity about our daughter's significant risk for anaphylaxis from peanut but, actually, *more* flexible risk-management strategies than we have had in the recent past. Mind you, I'm not talking laissez faire, and we are now on order to give Epi automatically with any definite peanut ingestion, regardless of symptoms. But we will accept slightly greater risk in certain situations.

    And -- honestly -- I feel way less stressed than I did before the test.

    Peeps, if you're on the fence about uKnow, don't rule it out just because it's not a perfect test.


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