Let's run those numbers for fun, shall we? There are around 76 million kids in the United States. According to FARE (love the new name!), about 8% of parents believe their child has a food allergy, so around 9.5 million kids.
However...researchers say a good portion of these kids are sensitized, not allergic. In one study, of 11.8% of kids who showed up on a peanut panel as sensitized to peanut, only 1-2% actually demonstrated an allergy when challenged. That's just 17%. Studies have varied on the sensitization-to-allergic ratio, ranging from 20-50% of OFC fail rates after a positive skin or blood test, but the number is huge.
Depending on which ratio you use, we're talking about between five and eight million kids whose parents believe they have an allergy, but who really don't.
Why? Why in the world is there so much uncertainty with something that should be so easy to demonstrate?
You read that right. More times than we would like to admit, U.S. healthcare is predicated on whether a doctor is actually reimbursed for a procedure. And guess what — until this year, oral food challenges were reimbursed by insurance companies using a diagnostic code that didn't fully cover the time required to perform the challenge. As a consequence, some doctors just didn't bother. (How many of you have been told "we don't do challenges in this office" in the past?)
The good news is that the coding issue has been fixed. Two new codes have been added that allow doctors to bill for the staff-heavy first two hours of a challenge, and then on an hourly basis for food challenges that run longer than two hours.
It's infuriating that something so simple has stood in the way of more parents getting a definitive answer about their child's food allergy. I'm happy to finally see the financial incentives being aligned to address this issue for physicians. It would be great if the parents' emotional incentives could also be appropriately aligned.
A food challenge done in a proper setting is about as risky to your child as a vaccine. It's time to put the risks of oral food challenge in perspective and consider more strongly the benefit of knowing.
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I never knew why more parents didn't go for a food challenge when their child ate the food in question without a problem, but had a skin or blood test that indicated something else. Thank you for clarifying that! Won't help my son as he had multiple food reactions before we even got him tested so the tests were only confirmation, but now if his numbers ever drop, I can push for the food challenge as it's paid for!
ReplyDeleteI don't think you shuld underestimate the anxiety factr. Here in Australia we just waited 6 monthhs for my son (age 4) to do a peanut challenge. He had a psitive skin prick test, moderate result on bloods, but both had reduced. He had never eaten peanuts. He is also allergic to milk, eggs, treenuts and sesame. While we were waiting we did an arah2 test which came back moderate as well. I was agonising whether to do the challenge, his allergist and I discussed it at length. We did it, he failed after an immediaate reaction to 1/8th teaspoon of peanut butter. We are now dealing with the emotional aftermath. So sometimes a little hesitation is warranted. n the whle I agree with you though.
ReplyDeleteWow! This was a good read! I think, as "anonymous" points out, for those who've had significant reactions there is often very good reason to be cautious about challenges. I never understood what an issue this was, though, and I've been surprised in the past to meet families who were as anxiously avoiding foods as we are, but without ever having had a severe reaction experience to warrant it. I didn't understand why, but I think I do now. Thanks, as always, for your eye-opening blog!
ReplyDeleteLaura, for people who have had a significant reaction, there isn't much point to a challenge. The question is what constitutes "significant." Reading through the FARE materials, some parents are pointing to upset stomachs as evidence of a food allergy reaction. I think in those cases a food challenge can provide an objective assessment.
ReplyDeleteAnonymous, I do not underestimate the anxiety. We have done many (many!) food challenges and I do understand that there is an emotional toll. My son has another round of them that starts tomorrow. However, I hope you will agree with me that it's better to know, one way or the other. It may not seem like it right now, but knowing the allergy is real, serious, and that it involves a low threshold will hopefully give your son information he needs to remain safer as he grows.
When my son had a significant reaction around that age that involves botched IV lines and lots of ER trauma, we had to let him work it out through play over several weeks. I encourage you to get down on the floor and give him an opening to act it all out. It really does help. Hang in there!
A quote from the article that greatly concerns me.
ReplyDelete"Much of the time it's because parents are not willing to tolerate a few hours of anxiety and discomfort for their child (in a carefully controlled environment) to have a firm answer."
Please consider: any of our FA children may have suffered bullying, teasing, life-threatening reactions and a reduced quality of life. For some children, challenges are a very invasive anxiety ridden procedure.
After any serious reaction, these kids go through hours, and sometimes days of emotional anxiety after being ill. Especially if the reaction occurred as a result of a caregiver's oversight.
More children could be more accurately diagnosed, but would not agree that challenges are the best solution. It is my understanding, from information I have gathered from other parents, that food challenges are not (at this time) capable of providing firm answers consistently across the board.
Thank you for your contributions to the food allergy community and bringing such issues to light.
NoNuts, I can hear the anxiety in your post. It's clear you're not willing to pursue a food challenge for your child at this point. But I really don't think it's fair to extend that unwillingness to saying that food challenges are not diagnostically useful for anyone.
ReplyDeleteThere is also a major difference between a food-allergy accident and a planned-for challenge with a child who is properly prepared.
If you ask an allergist (which is what I would suggest over asking other parents), what they will tell you is that with food allergies, a challenge is the only test that comes close to certainty. It is clearly many percentage points better than the 50% crap shoot that food allergy testing seems to be. Here's what FARE says about the definitiveness of OFC:
http://www.faiusa.org/page.aspx?pid=425
Everyone is afraid. It's what you do despite the fear that defines courage.
"Depending on which ratio you use, we're talking about between five and eight million kids whose parents believe they have an allergy, but who really don't."
ReplyDeleteWOW - this type of number makes me wonder if it's MY kid who is one of those who may not actually be allergic. She is getting the uKnow test this month and we will follow that with a food challenge. To the poster whose child was given 1/8 teaspoon of peanut butter, that sounds like a TON at one time for someone who might be allergic.
It it is good to know with certainty, yes, you are right. Skin prick testing just seems so hit and miss. My son has failed 3 challenges now, two (milk in baked goods and peanuts) in quick succession, one with anaphylaxis, despite having quite good/reducing skin prick test results. Our allergist is definitely not one to hold back on a challenge if there is a reasonable chance of passing and the main problem where I am in Australia is actually the waiting lists for supervised challenges. I love reading your posts about approaches in the US and the studies being done, it gives us all hope, thank you.
ReplyDelete"But I really don't think it's fair to extend that unwillingness to saying that food challenges are not diagnostically useful for anyone."
ReplyDeleteTo clarify...
I said that I didn't think challenges are the best solution (as a way of testing) nor did I mean to express unwillingness. I've personally supported friends in their children taking challenges, it's right for some, but not all.
But right now, it is one of the FEW options available.
Should we as parents, be satisfied with testing that for some, is highly invasive and both physically and psychologically?
Would it be a better solution to create testing that has goals that include accuracy and to be the least invasive as possible?
If we don't ask for better testing, who will? Testing should not be about anyone's courage, but about obtaining accurate information with the least amount of harm. When I have spoken to board certified allergists, they are willing to test children (with a history of ana) and push them to projectile vomiting/hospitilazation before stopping the test. This is not something we are willing to do, and it has nothing to do with "courage" or "anxiety".
This quote still concerns me:
"Much of the time it's because parents are not willing to tolerate a few hours of anxiety and discomfort for their child (in a carefully controlled environment) to have a firm answer."
It should never be "ABOUT" the parent. How does this testing affect the child? Are the answers full proof? Or do some children develop sensitivity at a later date? Do we really even know the answers to these questions yet? Have there been studies?
Thank you for opening the door to discussion on this issue, and I hope that you might consider researching and writing about the issue of anxiety and the degraded quality of life for LTFA families. There are medical studies published that discuss the levels of anxiety living with this disorder, and how it can affect quality of life.
NoNuts, I write about nothing BUT anxiety when it comes to food allergies. But the whole point of my column is to not reinforce unnecessary anxiety, as many bloggers and support boards already do.
ReplyDeleteI know you have a young child. I know you are still adjusting to the anxiety with all of this. But I am never going to say what you want me to say about this. If there is no convincing history of anaphylaxis, your child will need to do a food challenge at some point in the future if you really want to truly know where you stand. There is no substitute. Even the results of component testing (which is a better test tool IMO in many ways than SPT/RAST) still need to be verified through a challenge.
It is not an easy day for the child, no doubt. But a child who is old enough and well-prepared with regard to what to expect can tolerate the anxiety and the physical discomfort. If you look at the research on all this, both parents and children actually do BETTER after a challenge with regard to anxiety:
http://www.mendeley.com/research/parental-anxiety-before-after-food-challenges-children-suspected-peanut-hazelnut-allergy-1/
A food challenge done in a controlled environment with a knowledgeable allergist has very minimal risk. Yes, kids may barf. But there are very few instances of required hospitalization after food challenges.
Have you actually talked to your allergist about what the outcomes have been for his patients who have undergone food challenges? Please don't create an anxiety tiger about something that is habitually done dozens of times a day throughout the country!
Yes, anxiety can be a healthy emotion. It helps to keep us safe when managed well. Any child with any chronic health condition has anxiety associated with their health condition. It is part of their condition and should be considered as part of the whole child's health and never minimized or overlooked to satisfy a parent's needs.
ReplyDeleteMy point was that this is not the BEST test, and we should demand more for our children as a community. Again, I have supported families taking the challenge. I am not against it, only wanting testing improved.
To clarify, I have an older child with a history of ana. Our allergist does not suggest we participate in this test.
Thank you for the study link, but this offers only one perspective. I could also post articles on QOL (quality of life) and anxiety. But I don't want this to be a "posting war". Each child needs to be looked at individually both emotionally and physically.
I am concerned when you refer to a reaction as "Yes, kids may barf." A child's reaction should never be simplified, or minimized. How will this affect your child to know this was done intentionally? Was it worth it to THE CHILD? We as adults have choices, shouldn't our kids?
Thank you for opening up discussion, and I appreciate your encouragement to those in our community that challenges will help.
I'm not sure how to respond to "it's not the best test." Of course it's not. But it's what we have.
ReplyDelete(And I really think it's unfair to say that I'm "simplifying" a reaction simply because I said "barf." If you've read my column for any length of time, you must know we take these food challenges very seriously, despite the barf.)
I would very must like to see links for any studies that show that food challenges have a negative impact on the physical or emotional health of a child. That's important information, not a "posting war." Please share!
I think a lot depends on your confidence in your allergist. Some of us tolerate our allergist and their basic knowledge of severe food allergies. Especially for those of us who have contact reactive children to some foods. My son is severe. Food challenge not needed to top three. Would love to do food challenge to egg but after skin prick test I am not sure great idea with our allergist!
ReplyDeleteYou can suggest that blood tests only demonstrate a pollen allergy and not a true food allergy but this is incorrect. Yes, absolutely consider a food challenge as well. However, food allergies can present in many different way and because of this, I believe many people & Dr's poo-poo the blood test results. I know first-hand that food allergies can cause symptoms such as brain-fog, muscle issues, headaches, neurological symptoms, etc and just because it is not a hive or an anaphylactic reaction, many feel that it is not a true food allergy. This is incorrect. Just bringing another point to light.
ReplyDeleteI continue to read and appreciate your column. No one else is saying (out loud) what you are, and what is rolling around in all of our heads when we KNOW the research is telling us that blood tests and skin pricks are not the whole story, not even those high test numbers that keep our allergists from food challenging.
ReplyDeleteKEEP GOING! We love your blog and thank you.
Nutrimom, what you're describing needs to be called something other than a food allergy. I hope you can agree with me that there's a big difference between a child swelling and gasping, and "brain fog, muscle issues, headaches, neurological symptoms, etc."
ReplyDeleteThis is an absolute pet peeve of mine. People take precautions for my son less seriously because so many other people use the phrase "food allergy" to describe a cluster of symptoms that does not resemble at all what happens to him.
I am not saying that people cannot have food intolerances that make them miserable. But please stop calling them "food allergy."
(And thanks, Stephanie - I appreciate it.)
Sorry I did not see your response sooner or I would have replied. I understand your anger towards people who you feel are less than courteous to your son due to others that may use food intolerances for other reasons. I would like to clarify-of course, there will always be people that do this because many people just do not get food allergies. My son has both- life-threatening food allergies and food intolerances. I also have many, many clients who have food intolerances BUT just because they do not hive up or aren't ana does not make it any less important. Avoiding specific foods has helped them come back from a life of severe symptoms considered comparible to MS, Fibromyalgia, etc. To me, this is just as important as a food allergy if it impairs your life. I wasn't trying to argue about it, I was simply sharing facts. Food allergies are tricky enough on their own. Having more information is better. And screw all of those other people that won't take your child's allergies seriously- someday they may need your help for the very same reason they poo-pooed you.
ReplyDelete