Yesterday the Today Show featured a segment on food allergies and the New York Times ran a story on the same topic. In a nut shell (ha ha), the story focuses on false positives that come from the skin and blood testing done to diagnose food allergies. I have mixed feelings about this story. Yes, false positives are possible. In the years that we have been going in for testing we have had false positives for rice, soy and strawberries BUT the allergist (and we have seen several) always goes back to the history, "Has your child reacted to this food in the past?" I have even had an allergist say "Reaction trumps testing."
I realize there may be bad allergists out there and for those out there seeing their pediatrician to diagnose their child's allergies I say go see an allergist, preferably one who has experience and knowledge diagnosing food allergies. BUT for the most part, the parents and children I know get diagnosed as the result of a previous reaction, generally a scary one.
A few months ago Max's school sponsored a presentation by FAAN regarding food allergies. Toward the end of the discussion period one parent spoke up about how her child had been misdiagnosed as having multiple food allergies and they had to avoid all these different foods. She was angry and very verbal about her situation. If I was her I would have been angry too. She obviously got a doctor who didn't know what they were doing if they did not take her child's history into account. I spoke up and talked about Owen's diagnoses and how though he had a low positive on testing, an oral challenge resulted in him receiving epinephrine. I could have also talked about Max and his peanut challenge last summer. I spoke up at that time because I didn't want people walking out of that presentation thinking that testing results in a lot of misdiagnoses.
The Today Show did emphasize that people do have food allergies. They are real. And if a food allergy is suspected food challenges should only be done with the supervision of a doctor. But I can't help feeling that a back lash has begun. At the end Matt Lauer said this information could be very freeing for some families. What he didn't say is that when it comes to dealing with family and friends this story could make things more difficult. Can't you just see Auntie Betsy saying "Oh, let's just give him a little bit of peanut butter (cheese, bread, pecan, insert your allergen here) and see what happens."?
9 comments:
Exactly. Because this isn't hard enough?! My little person's allergic reactions are long delayed, which make them even harder to explain. "Sure eating that won't kill him, but he'll be up all night with extreme stomach pain!"
Landon didn't sleep for more than 1 1/2 hour to 3 hours for two YEARS because of his stomach pain. I'm sure I was just over-reacting, right?
It's hard living with children with food allergies. Why would we do this if we didn't have too?!?!?!?
Yep! It's scary how "easy" food allergies are made out to seem in the media unless someone dies. But on the other hand, did we understand the realities of food allergies until we had them on OUR homes??
About family members still trying offer foods... I just think stay viligant and strong... you're the parent and it's ok if they are not eating foods that you are concerned about regardless of the test. And I even think it's fine if someone thinks I'm "over protective or crazy" when it comes to my kids, food allergies.... at least they are safe!
We've had false negatives with tests. So then at home we tried giving the food.... thank goodness no EPI.... I think even allergist rely on these tests, even when they are known not to be 100% accurate. And WHY doesn't my allergist do blood tests or food challenges??? GGRRRRR
BTW... speaking of NEWS items... it's a good time to have a peanut free home isn't it??
My heart goes out to all who were sickened or dies due to the bad peanut ingredients in their snacks.
Although I thought the Today story was far more balanced than most in the mainstream media, I do wonder why so much ink is spent on trying to "prove" that the allergy issue is overblown. I'm sure autism and ADHD are misdiagnosed even more than allergies, but you don't see story after story downplaying their incidence.
I was also irked by their choice of subject. At the end of a successful sesame food challenge, the mom says that this is great, because now her son can have the sesame bagels he really likes instead of the bagels he normally has to eat. Ummm...lots of us can't imagine our children eating *anything* from a bakery, and are less concerned with their likes and dislikes than how their nutrition may be suffering from strict, wide-ranging restrictions on their diet.
I found the NY Times article, "Is it a food allergy or false alarm?" and the follow-up discussion on the Today Show to be fair and balanced. There was an acknowledgment that food allergies are real and need to be taken seriously. There was also discussion about the problems with our current testing methods and recommendations.
Media attention to food allergies gets people talking and thinking. Hopefully this leads to more interest which may lead to further research for causes and cures.
We need to keep emphasizing that a reputable allergist, using the best tests available, helps parents decide how to best handle their child's food allergies. We need the support of the medical community, our schools, our neighbors, our families and the media as we make our way through the confusing and conflicting information we sometimes receive.
Let's keep talking!
Oh, but I'm torn.
On the one hand, I spend a lot of time trying to explain my boys' allergies to people. And I spend even more time trying to decide if they are taking me seriously enough.
On the other hand, one of the really frustrating things about food allergy is the testing. False positives, the numbers don't match up to severity for each allergen, etc. So.
I'm hoping that this little burst of publicity can prod some chemist/biochemist to work on better testing. It would sell so very well...in the meantime, this does highlight the difference between a decent allergist and a *good* one.
They know how to read the tests, and have enough clinical experience to make better (only better, but still) guesses about what this means for managing your child.
So, yeah: given this, who on EARTH would anyone go to a pedi for food allergies? Arrgh. Sub-par allergists, pediatricians (generalists, wonderful but not specialists) - folks like that raise the chances of meeting an angry mom of a misdiagnosed child.
And bad PR that the rest of us can't always afford..
Oh, Trisha - for almost four years, the Eldest had a 2 hr, 45 min max on his sleep. We could time it - he'd sleep less than 2.75 hrs, but never more.
And if anything'll make a mama crazy, years of sleep deprivation might just do it, hey?
But I've got a nice, padded cell here. Should be room for you, if you ever need to move in...
I love your blog, it is interesting and insightful. I also have an allergen-friendly blog/website and am hosting a 5 course meal in Chicago that will be free of the 8 marjor allergens plus gluten on March 7th. All proceeds are going to charity (FAAN and FAI). The event is being hosted with The Cooking and Hospitality Institute of Chicago. Check out my site and let me know what you think. I am building the site out to include other bloggers/resources and would love to include you.
Regards,
Lisa Williams
great post! i missed that today show segment. i would love to add you to my blogroll at www.foodallergymama.com - is that OK??
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