Sunday, March 14, 2010

Can We Go Overboard in Our Efforts to Protect Food Allergic Children?

Warning: This post will be controversial.

I have seen too many instances of terrified parents falsely believing that being in the same room as a peanut is going to kill their child. I have heard too much about 10 year old children being kept home from birthday parties, families being kicked off planes for requesting that peanuts not be served to anyone on board, of people demanding that high schools be peanut-free. I feel that something needs to be said.

The bottom line is this: there comes a time when we need to sit down and come to terms with the actual risk posed by inhalant exposure of peanut allergen vs. the perceived risk.

I do not need a double-blind placebo-controlled trial to tell me that the perceived risk of anaphylaxis to inhaled peanut protein far, and I mean FAR, outweighs the actual risk.

The majority of parents whose children have experienced food-related anaphylaxis are understandably traumatized by the event, and would go to the ends of the earth to prevent a repeat reaction. I get this. I personally know the nightmare of being doubled over in pain, covered in hives, and feeling my inside of my throat swell to the point that I had difficulty speaking. I am the mother of two allergic children myself, and was pleased when my son's daycare informed me they were peanut-free. To my mind, makes sense to exclude peanuts from a facility full of little kids with poor impulse control.

But I am saddened by the number of parents who wrongly have been made to feel as though the world is not safe for their children. Anaphylaxis sucks. But the vast majority of children with food allergy, even those who experience anaphylaxis with ingestion, are able to live safely in close proximity to their food triggers. Peanut protein is undetectable in the air after study subjects have consumed peanut butter. A study by Dr. Scott Sicherer (a highly esteemed clinician-researcher in the field of food allergy) evaluated 30 highly peanut-allergic children by having them sniff peanut butter for 10 minutes- none of the children reacted. This might be different with peanut flour, which could potentially trigger symptoms at points of contact: eyes, nose, lungs. However, this would be with close proximity, and is exceedingly unlikely to trigger the cardiovascular collapse associated with full-blown anaphylaxis.

So, why are so many parents telling teachers, school administrators, restauranteurs & airlines the following: "Don't you get it? My child could DIE!"

The answer is simple. Because they believe it.

At some point, a medical professional did an allergy test, gave the parents a lecture on the dangers of hidden peanut exposure, advised strict peanut avoidance, and trained the family in the proper use of autoinjectable epinephrine. None of these these are necessarily wrong.

The bad part is what's missing from the conversation. Where is the discussion about the actual risks of having peanut products in the home or school, the utility of peanut-free tables, of going out to a restaurant, of flying on a plane? What about the risk of eating those pesky "processed in a facility that also processes peanuts/tree nuts" items? This is where we, as a medical community, have let food-allergic children and their families down.

All too often, it seems easier and safer for the doctor to say- "Avoid peanuts at all costs. Here's an EpiPen- keep it close, and don't hesitate to call 911." Why unnecessarily risk a severe reaction, right? Seems logical enough. But it doesn't make things easier. It makes things harder. It FREAKS parents out.

The above statement, translated into parentese, is this: "Remember how your kid looked after eating that peanut butter cookie- all red and swollen and puking? If you're not careful- it'll happen again- might even be worse! Better be ready!" You think you're being cautious- but at what cost to your patient's quality of life? No wonder the parents are losing hair and gaining wrinkles over sleep-overs and school lunches and class trips to the state capitol! No wonder we have a new generation of children so ardently protected from any chance peanut encounter, however minute, that they've come to see the outside world as a danger zone!

This is counter to what we should be trying to accomplish as medical professionals. What is needed is a more nuanced, individualized discussion of risk, tailored to each peanut-allergic child. Parents need to know what to protect their children from, to be sure. They need excellent training in the indications and use of emergency medicine. But they also need to know which situations are relatively safe, even if it goes counter to the popularly held conceptions. This is where counseling from an allergist can be especially helpful.

It breaks my heart when I see parents who have not been adequately educated about the real risk involved with non-ingested peanut exposure, and have therefore been worried about scenarios that pose little to no risk to their children. As physicians, the onus is on us to do better by these families. All it takes it a little time, thoughtfulness, and a willingness to break free from a cookie-cutter approach to treating food allergy.

10 comments:

  1. THANK YOU. This needs to be said, shouted, printed and sung in hymn form. By better understanding where the real risks are (and aren't) we, as parents of food allergic kids, can be in a better position COLLECTIVELY to ask for and receive accommodations that we actually need rather than wearing out our welcome, so to speak, by asking for all these things that we don't need.

    ReplyDelete
  2. I'm very glad to read this blog post; I agree that it's something that needs to be said to a wider audience. The amount of peanut paranoia in the schools and other public facilities astonishes me. To live with that level of heightened over-vigilance is not healthy on any level -- and not just for the allergic child, but for all her classmates and the people around her too.

    An injection of realism is very much needed.

    ReplyDelete
  3. I have to be honest here. I am a bit disappointed with this post but agree with some aspects. Do I feel that there are people who over react using "food allergies" as an excuse? Maybe. Have I ever met one? No.

    I think what I'm most disappointed is that you only focus on the inhalation portion of avoidance and not cross contamination. For example, there is danger when a child enters a room after someone ate peanut butter (if that's the allergen) where the room wasn't decontaminated. Then the child touches the same, peanut butter-laced items and rubs his//her eyes, nose and mouth (all areas of ingestion). People of all ages have done this (rub eyes, picks nose and puts fingers in mouth).

    After attending a FAAN conference I learned that 54% of kids ages 13-21 ingest their allergen knowingly! So the idea that it "takes a village to raise a child" cannot be more true in this instance.

    I do agree that allergists need to play a more productive roll with the families. Just handing over a prescription for an Epipen and state to avoid the allergen isn't enough. That's where I agree with you. Never the less, parents have to stay vigilant. The Epipen is not a "get out of jail free card". Sometimes it works, sometimes it doesn't.

    As far as being kicked off a plane because one has asked for it to be peanut free is not something to be taken as lightly. It's not a chance many people would take at 35,000 feet in the air where an emergency landing can take nearly 1 hour. I state again, "the Epipen is not a get out of jail free card". Even when Dr. Wood at John Hopkins had a severe allergic reaction, it took 5 epinephrine shots to stop his reaction. This at ground zero. Can you imagine being 35,000 feet and only having 4 Epipens?

    I have a child with multiple food allergies. I take an active roll in her life with food allergies. Do I put my child in a bubble? No. Do I keep her home and avoid play dates, vacations and restaurants? No. Do I ask for accommodations to make her safe while at school or elsewhere? You damn right I do.

    ReplyDelete
  4. Thanita- thanks for your comments. I focused on inhalant exposure in this post due a recent flurry of online interest in the risks posed by airline travel for peanut-allergic individuals. Much of the argument for peanut-free planes rested on a claim that inhaled peanut protein was likely to cause anaphylaxis. With a recent story about a woman being kicked of a plane, the tragedy is two-fold: 1) that an airline would actually find it appropriate to treat a family so poorly, and 2) that the accommodation requested was probably not even necessary. (Inhalant anaphylaxis unlikely in the air, and if contact allergy is to occur, making this one leg of the flight peanut free won't do anything to change the risk.)

    By no means am I suggesting that parents are deliberately over-reacting or using food allergy as an excuse for special accommodations. What I do firmly believe, however, is that many of the parents requesting these accommodations are doing so because their children have at some point been painted with an overly broad "peanut-allergic" brush.

    I think it's beneficial to have parents advocating for the safety of their children- but I think the medical community needs to do a better job of determining which protections really make kids safer vs. which accommodations simply make us grown-ups feel better.

    ReplyDelete
  5. Dr. Bajowala - Do you know what's ironic? I'm a parent advocate working with my local school system, advocating for children with food allergies. I haven't met one parent that had the "over reacting", accommodating hungry person you speak of nor the airborne fearing. Quiet the opposite as a matter of fact. Some of parents I've met are so carefree, some too carefree!

    For example, at my daughter's birthday she invited kids with food allergies and kids without. One child in particular has the same allergies as her but the parents did not bring the child's Epipen to the party, sighting that they feel safe their child is with me. THAT to me is putting an undue burden on the responsible parent, which in this case was me. Luckily I came equipped with extra Epipens. Never the less, it's the relax thought that can be more dangerous and puts a burden on those around.

    That said, I have known children sitting at a cafeteria table itching like crazy, constantly being sent to the nurse for hives, rashes etc and it was because their allergen was present and no one did a thing to stop it. It causes a barrier to learning and puts the FA child's quality of life in the toilet.

    I have to talk about the airplane incidents again. I think what bothers me is that there is a legitimate argument here and it's not being seriously looked at. Yes the chances of an airborne reaction are slim. Never the less, it is depended on how seriously the food allergic person is, how educated the people around him/her and other factors (which I believe is what you were speaking). Never the less, the argument is legitimate that if a person is flying in an enclosed area (the plane) and his/her allergen is being served, there isn't many places to go for safety. You don't hear about it in restaurants. The FA community doesn't ask a restaurant to stop serving nut/peanut products for the time being the FA person is dining in. We just don't go to those restaurants or we take the proper precautions to avoid a reaction while dining. The fact is, people have to fly, move, visit family etc... and the danger is in the fact that at 35,000+ feet in the air, the chances of a reaction rises and the probability of timely medical attention decreases. The reason we hear about these unfortunate events (getting kicked off a plane) is because the airline industry doesn't want to risk a law suite because the FA community, by virtue of having food allergies are a liability.

    I understand what you mean that if contact reaction is a concern, making this one way flight may not help due to traces of the allergen already being left behind. The key word though is "may". It may help by eliminating the stronger chance of a reaction because the allergen is no where in site. No one eating it, coughing while chewing, licking fingers then touching everything, dropping it on the floor then stepping on it leaving it crushed in little pieces etc... The plane may have been cleaned which increases the chance of NOT having a reaction. Fact is, not having the allergen present reduces the risk and that's the name of the game!

    I guess the focus should be shifted from inhalation to contact reaction. Maybe you can do a follow up post and talk about shifting the mindset and reasoning that contact reaction is the bigger danger to most FA people while both contact and inhalation is a danger to a smaller group. Still I firmly, 100% agree that there should be peanut free flights.

    ReplyDelete
  6. Thanita - I know you do a good job with your food allergic kiddo (just "knowing" you through Twitter). You're lucky that you haven't encountered the Others. That's what I call the parents that I have come in contact with (through daycare, through my website, and second hand through friends of mine who are teachers in local public schools) who are so panic-stricken by their kid's allergy (and I'm being generous here, because a lot of them have intolerances, not allergies) that they blunder around making a lot of noise and a lot of demands that frankly don't make sense.

    The airline issue is thorny. We both know that you can only expect the accommodations you ask for in advance. We research restaurants BEFORE we go. We talk to parents BEFORE the playdate. And we call the airline BEFORE we book a flight. Now, I've had problems (major ones) with an airline who promised me accommodations, then changed their story when we hit cruising altitude. Who's to say what would have happened if that conversation had taken place before take-off? There would have been serious heck to pay if they had kicked us off the flight. But, with out without the guarantee of a nut free flight, we still carry multiple epi-pens, wipe down our whole row, talk to our neighbors, keep hands washed etc. Because your point about cross-contamination is right - with peanut butter (and to an extent, tree nuts) the issue is the stickiness of the straight protein hanging around on surfaces to get picked up by little fingers.

    I think the main points here are that (1)there can't be a one size fits all policy due to the wildly divergent circumstances between allergic individuals AND our inability to predict what the next reaction will be and (2)our doctors/allergists do need to do a better job of explaining what the realities are so we aren't left to the mercy of the internet to dictate what safety measure we need - it would help if the medical community could agree on what those are, but I won't hold my breath. :)

    ReplyDelete
  7. I agree that physicians need to do a better job of educating parents. You scare the bejeesus out of us and then say "why are you so uptight???" And some food allergies are life or death. We need to be made aware.

    I have done my best to keep my tree nut- and peanut-allergic daughter involved in normal activities. However, I've seen her react to very small amounts of peanut.

    You commented (it seems) that peanut-free tables in schools may not be needed. At the beginning of the school year, my daughter sat at the "regular" table. That day, after she sat down, students with peanut butter, bags of tree nuts and many other nut products sat down near her and began eating and opening their bags of food. She started to feel ill and her face began to swell, then hives began. Luckily her reaction was mild and Benadryl stopped it. Her allergist guessed that she had gotten a small amount of another child's food onto her food, which she then ingested.

    Before this happened, I would never have thought she would have to be kept away from these products to that extent. However, now I don't know what will trigger a reaction. And I'll tell you something--on an airplane, I don't want to find out. We've flown on planes before, with peanuts and tree nuts in evidence and she's been OK. However, the school lunch room incident makes me wonder--what is the threshold for reactivity and can it fluctuate? Why do we need peanuts and tree nuts to fly? How about another snack, keep quiet about the peanuts and call it a day? Why are they peanuts and tree nuts necessary in an airplane? They're not.

    Please consider when you make your "controversial" statements that as parents we count on doctors to be our advocates and allies. I'm all for normalcy with nut allergies--in fact, I'm a huge advocate of this. But there is nothing over the top about teaching caution. My child is not fearful, she's confident. And what's worse--saying yes to every party and having a child experience a life-threatening, traumatizing reaction or skipping a situation because of too much "real" risk and avoiding same life-threatening, traumatizing reaction? I'm sure you realize that many non-allergic families don't understand food allergies at all. We've got no choice but to pick and choose our activities. That's life for a food-allergic person--you sometimes have to alter your plans.

    I would say that the majority of "accommodations" (and are those hard-won!) have nothing to do with making grown-ups feel better. It's about helping kids not to have life-threatening reactions.

    ReplyDelete
  8. Oh and another important note: in our case, there is no "overly peanut allergic brush" that we've been painted with. On her first reaction at 4 years old, I was told that my daughter's reaction was so severe we're lucky she survived. So yes, I guess I "believe" she could die and not only because of what I was told, but what I actually witnessed.

    BTW, I truly appreciate this blog and while I don't agree with all of your sentiments in this post, I appreciate your efforts at transparency and education.

    ReplyDelete
  9. Thanks to everyone for their honest comments. I knew this post was going to be well-received by some, and not by others. The point is always to stimulate discussion.

    For the record, I am not anti- peanut-free tables or peanut-free flights. But as mentioned earlier, there are no "get out of jail free" cards. I agree that these strategies may decrease risk. How much the risk is reduced by implementing these measures still needs to be clarified. Without sufficient evidence to show a significant risk reduction, it will continue to be difficult to successfully advocate for changes to established commercial and municipal policies. We need more studies to establish the efficacy of food-allergen risk-reduction strategies.

    I agree that the intention is always to protect the food-allergic individual, and not to appease any particular party. No one advocates for something thinking, "My kid probably isn't much safer, but at least I sleep better." What I'm trying to point out is that even if that's not our goal, that may be what we're ending up with: changes that make us feel like we've done something to substantially reduce risk, but really don't modify risk significantly at all.

    Unfortunately, the capacity for industry and public policy to change is finite- it's an imperfect world, and as I have no choice but to work within its limits, I would rather spend my capital on advocating for changes that are more likely to help more children. I just want the science to back me up when I do it.

    ReplyDelete
  10. I am so glad I stumbled across this post. I am 21 and just developed an allergy to hazelnuts. My doctor prescribed me an epi-pen and instructed me to "Avoid nuts like the plague because your next reaction could be much worse!" Well, talk about scaring the bejeesus out of people! So I came home in a panic and instructed my husband to remove all nut products out of the house and to not eat them anywhere near me. Because what I got out of the conversation with my doctor is that I could die from being anywhere near them.

    I have eaten nuts all my life and one day as I was drinking a hazelnut coffee my lips got really itchy. I however did not think anything of it and decided to have another one about a week later. My husband and I were headed to pick up some groceries and after 2 sips of my coffee my lips got really itchy again, and then my whole face was itchy and it felt as though my lips were swelling. My husband then pointed out that my lips were turning purple and sure enough I had purple lines all over my lips.

    It's very scary to have a reaction out of the blue and then when your doctor isn't overly clear and tells you to avoid it you tend to go to the extreme!

    ReplyDelete

Thanks for taking the time to comment on this blog's posts! Let's keep the discussion engaging and free of frivolous advertising or vulgarity. It's a family show, folks!