Wednesday, August 22, 2012

Are Food Allergy Bans Even Protective?

I just love this picture.
What was this guy thinking about?
There's been wailing and gnashing of teeth this week because the National Association of School Nurses came out with a new position paper regarding food allergies. (It actually came out in June, but it seems to have just hit most of the chat boards this month.) Many food allergy advocates were disappointed because of the statement about food bans:

Maintaining a healthy environment is essential.  All environments in the school setting require special attention to protect students by limiting allergens or providing areas that are allergen safe (National School Boards Association [NBSA], 2011).   Completely banning nuts or other foods is not recommended as it is 1) not possible to control what other people bring onto the school grounds, and 2) does not provide the allergic student with an environment where he/she can safely learn to navigate a world containing nuts.  When a ban is instituted, parents feel their child will not be exposed to allergens.  A ban can create a false sense of security (“Banning allergies from school”, 2012).

There's one phrase in there that's designed to ruffle the feathers of moms of older kids: "false sense of security." That particular wording goes back to the early days of FAAN when Anne Munoz-Furlong was still running the show. There was such strong feeling about this issue that many people stopped contributing to FAAN as a result of that one statement.

Personally, I have always felt a special kindred for AMF because she also has a child with a severe milk allergy, and milk allergy definitely gives you a different perspective on the world. I don't disagree with the "false sense of security" statement.

But that's not what this blog entry is about! We could argue endlessly about peanut bans, and I have addressed them in another blog post. What I'm more interested in talking about today is whether they even do anything to protect most kids.

If you get into debating the need for peanut bans on any of the chat boards, you'll quickly learn that many people believe that  reducing the amount of peanut surrounding their child is, in and of itself, protective. You see a lot of statements like "yes, a ban is not perfect, but it reduces the amount of peanut in the school, even if some people cheat." 

If you stick around longer, you'll probably also notice that people often speak about the peanut in a phobic way. It supposedly "floats in the air" and "sticks to every surface." It's like a tiger, just waiting to jump out and attack our children. The less peanut, the safer the child. 

But does that even make sense? 

Let's go back to last month's post about thresholds. In that post, I cited research that showed that, in the research group studied, 1% of food allergic individuals reacted to 2 mg or less of peanut. Another 16-18% had a threshold that's between 2 and 65 mg. (65 mg is equivalent to 1/5 of a peanut.) 

There's another important concept to threshold: gradual vs. cliff trigger response. What does this mean? 

With a gradual trigger reaction, symptoms would build as the amount of allergen in the system builds. If a child received a micro dose of an allergen, they would have a micro response, and responses would build and remain proportional to the dose.

With a cliff trigger response, a child would go from fine (no symptoms) to reaction. 

My understanding is that the vast majority of reactions out there are the cliff trigger variety. The threshold may change based on different environmental factors (hormones, illness, exercise, etc.), but it takes a certain amount of protein to tip a child into a reaction. Up until that point, there are usually no symptoms. 

The clinical trial we're currently in depends on this being the case. We will return to the hospital in October and my son will go back through the same set of challenges he experienced in April. The success or failure of the medication (assuming he does not have placebo) is predicated on him failing at a particular dose level. Below half a peanut - nothing. Above half a peanut - start of a reaction. (More peanut would certainly escalate things, but it takes a cumulative dose of at least a half peanut to get the ball rolling for him.)  

So, if we put those two concepts together: most children require at least 1/5 of a peanut to get a reaction started, and amounts below 1/5 of a peanut generally causes no trouble.

Is all that a guarantee? Of course not. But I think you can see how thinking about reactions as a cliff response rather than a gradual trigger response can be reassuring for most families. If your child is in the category of hyper reactors, you already know it. They have had reactions (not just hives - reactions) from being at the grocery store, the park, the movie theater. If your child is in this category, they very well may require a ban to be safer at school. 

"But what about contact reactions?" you ask. Yes, kids can get localized hives from contact reactions, but anaphylactic reactions to contact or inhaled peanut are very rare. (Here's a summary from Michael C. Young writing for FARE in Canada about inhalation/contact reactions.)  That's not to say that constant contact reactions aren't a pain in the rear! Again, kids who experience constant contact reactions would probably benefit from a ban. 

For the rest of our children...not so much. Having peanut around them doesn't affect them. Very few children are able to accidentally ingest a fifth of a peanut, unless they're licking their desk surfaces. (Preschools - totally different approach. I strongly believe they should be food-free. Kids at that age clearly do lick their desks, toys and likely each other.)

The sad part of all of this is that, probably at least in part due to the phobia and overreaction of parents who did not need this level of protection, we now have a strong policy statement from the NASN. It's going to make it a LOT harder for the kids who really could benefit from a ban to get one. 

At the end of every ban debate, there's always someone who just comes right out and says it: "why shouldn't I ask for a ban if it could make my child even the tiniest bit safer?" The answer is because invasive actions like food bans have backlash. People do cheat, kids do bully, parents are crappy, organizations do come out with policy statements. Asking for more than we really need always results in backlash. If a ban doesn't even make your child safer, why in the world would you sign up for all that? 


  1. My daughter is one of those super reactive kids to peanut, but I wouldn't ever push a peanut ban. I'm so glad you talked about this because it was on my mind last week and I was starting to think I was the only one who thought it was nuts(no pun intended) It seems to me that if we have properly taught our children how to keep themselves safe and the school knows their responsibilities, leave it at that. Why alienate yourself and your child by starting a fight. You are really opening your kid up for bullying by identifying them as the kid with allergies while their parents talk about how crazy you are at the dinner table (and you know they will talk about the crazy mom who ruined the school with a ban) On another note, can you imagine if I tried to get an egg ban!

  2. "It seems to me that if we have properly taught our children how to keep themselves safe and the school knows their responsibilities, leave it at that."


    "There are more things in heaven and earth, Horatio, than are dreamt of in your philosophy..." (Yes, its Hamlet.)

    Respectfully, Horatio, if you're not someone who has ample cause to know that anaphylaxis is ALWAYS a possibility, everywhere, all the time... and that MOST major reactions are going to remain mysteries, no matter how hard you work to find out what went wrong...

    it's hard to understand the perspective of families (like mine). Let me elaborate with an additional post...

  3. Either we have to ask for "bans," or my child has to forgo the experience entirely. It's that stark a choice. Anywhere that allergens have been is almost a guarantee of at least a contact reaction, and she's a teenager with lifetime experience at avoidance. She's GOOD, I assure you; she can tell you exactly what someone has done with their hands for twenty or thirty minutes after eating a granola bar.

    But as the FAB notes, we knew LOOOOOOONNNNNG before my child was school-aged. As a preschooler, we had about a 50-50 chance of a reaction of some kind just going to the library. No kidding.

    I have to choose to be 'that family' because otherwise I truly do fear (not irrationally, if what our allergist has counseled over the years is correct) that the cost could be my child's life.

    Then again, my own experience as a support group administrator over the past decade is that about 10% of people with food allergies THINK that they are in that "very sensitive" category-- and only about one in ten of them is correct. Most of them are in that next tier that FAB refers to-- the 1-in-5 allergic people group. I have considerable angst when one of them attempts to tell me or my child that her sensitivity is "impossible" because they haven't experienced it.

    Sorry. If avoidance lets you live "normally" without impacting others aside from family potlucks and restaurant dining, if you rely on food labels for safety, then you are probably part of the 99%. (Couldn't resist. The FAB and I both love politics, too! LOL)

    I agree with the FAB. The problem with bans is that too many people want 100% certainty, or wrongly assume that they are in the 'super-reactive' category of people. I'd like even 60-75% certainty, and a ban could help get my family there.

    Instead, knowing what we'd be up against, we've chosen to educate that child at home rather than face the uphill battle to meet those needs in the context of a brick-and-mortar educational setting. We're not sheltering our child from the real world-- we're teaching her how to stay alive in it as an adult. She doesn't get a childhood; that ship sailed one morning when she was 11 months old and first anaphylaxed on a grand scale. Part of staying alive, for her, is about avoiding situations where trace exposures are probable, because experience has taught us that no amount of care is sufficient. I don't say that lightly. She MUST walk away from some risks; to prevent *anaphylaxis* not just to avoid contact reactions. We have no idea just how low her threshold is, but it's probably 10-50 ug on a daily basis, and maybe even lower at times. Anything over about a 2 mg can be seen with the naked eye as a 'film' or crumb. Microgram quantities are often invisible, even to those who are looking carefully.

    There is no way to safely "be around" average people handling an allergen when you have a threshold like that. Not without wearing a Biohazard suit. Somehow I think that would make most teens are distinctly uncomfortable with. :D Just a guess.

    She has learned to grudgingly ask her friends to make gatherings nut-free-- or even food-free-- to make it possible for her to attend. They seem to understand once they know her, because she very definitely walks the walk on this one.

    The hypocrisy is what I think galls people about bans, since that is what separates families like mine from some who ask for them with less cause. We do NOT do things like fly, go camping, go to baseball games, eat food prepped by others, etc. We can't. Our lives are NOT normative.

    Maybe we aren't even part of the 1%. Maybe we're part of the 0.1%, given what our allergist has suggested. But my daughter is still entitled to a public education that doesn't (at least not unduly) court death. Pragmatically? Yeah, problematic, that.

  4. This hits a nerve (the reason for the serial posts-- I promise I'm not spamming your blog, FAB!) because I'm very very tired of those who SHOULD be supportive suggesting that she just isn't trying hard enough to avoid allergens, and that we don't understand what 'safe enough' means. How many near-death reactions are "okay" then? We already live with risks that would make most parents quail.

    A "false sense of security" is downright insulting to those who *need* such protections. There IS NO SENSE OF SECURITY. ANYWHERE. EVER.

    There are pragmatic limits associated with bans, but I loathe language that implies that they're automatically unecessary measures which placate helicopter parents. That insults the people like my daughter who actually ARE "that allergic."

    Non-FA people of the world adopt food allergies that they don't really have... and FA people have adopted sensitivity that THEY don't have...

    siimilar backlash. :SIGH:

    In the first instance, the naive think "food allergies are made up," and in the second, that "everyone is exaggerating anyway."

    People lie to get what they DO NOT REALLY NEED. I wish they'd stop doing it, of course. People should just think of others. "Do I really NEED this? Or is it just for peace of mind? How inconvenient/difficult is it for others?"

    Yes, this is a VERY unpopular sentiment in support groups. LOL.

    I'm not about "most allergic kid" contests. I have no problem admitting that my child's milk threshold was always pretty high, nor were her wheat or soy allergies 'scary' like that. Her egg allergy is/was, but I've seen/heard about kids with equal sensitivity. Her peanut threshold IS extraordinary, but she's probably not "unique."

    The FAB could vouch for me there, as she has known me since my daughter was allergic to most of the top 8, and has seen me shred my psyche with mommy-guilt over the truly unavoidable. Those allergies weren't equally fearsome. We never treated them that way. We fear(ed) some allergens much more than others. But never is that fear unfounded. We fear things that have caused catastrophic rxns via tiny traces (too small to be seen, those from CLEANED production lines, etc.)-- er, or maybe more correctly we fear the "probable culprits" since we mostly have to live with never really knowing.
    If we can't identify a cause from a non-ingestion reaction, well, egg and peanut are the most common two to encounter casually in all settings. Ingestion reactions can be almost anything in processed foods (never labeled, usually from shared-but-washed production lines/facilities), and egg in restaurants (shared surfaces, dishwasher-remnants, shared fryers; we avoid any place that uses nuts). The very fact that I have a store of such anecdotes to draw from is telling.

    I'd never in a million years have thought about asking for a ban on something that she was clearly in the 16-18% group with. Never. The previous commenter is correct there; prudence is mostly enough to avoid major reactions. It's inconvenient and not much fun, but it can be done.

    The 1% don't have that luxury to start with-- they really ARE at the mercy of those around them as well as everyone who has BEEN where they are. All the time. We need for everyone (both food allergic and not) to be:

    a) open-minded,
    b) uncynical
    c) honest, and
    d) cooperative.

    Seldom the case, fwiw. Exaggerators tend to hit non-food allergic people on all of these, and they even erode support among allergists, nurses, teachers and other parents. Even FA parents. :(

    My child shouldn't have to be intubated to teach a nurse that reality doesn't, in fact, care what s/he thinks can't be true.

    There is no "safe" for her. There is only "safe enough," and it is nowhere near 100%. I only wish that it could be.

    1. Amen! I will NEVER give a dime to FAAN because of the "false sense of Security" comment. They have blood on their hands due to that statement.

  5. I just want to clarify that I wasn't trying to imply that my daughter is the most allergic, simply that she reacts to less than 1/5 of a peanut. She is contact reactive to both egg and peanut (even unseen) Washing after contact along with benadryl typically takes care of it. IF not, the adults with her know how to act quickly and appropriately(this is what I meant by the school knowing their responsibilities) Furniture outside our home is washed down before she sits on it and she always washes her hands before touching here eyes or mouth (well, tries to remember) if she has been in public. These precautions are almost always enough to keep her safe. I honestly find peanut bans, for the most part, frustrating. For some reason everyone puts their interest in nuts and that is what the public focuses on. My daughter is equally reactive to eggs but I've never heard of a school going egg free. My point is, in the real word when my daughter is grown she will be in a world where most people won't care about her allergies. We seem to live in a food oriented, self indulgent world. I am simply starting her training young. There is no 100% safe for anyone. Thanks for sharing your story.

  6. Bans are a tough question. You hit the important points-which allergen, where, when and for which child.
    I don't know what the answer is. My daughter gets contact reactions from daycare (where milk is like poison ivy)and pretty much each place we go. She has milk, egg, wheat, peanut and tree nut reactions, but it's difficult to tell which she is reacting by contact. Not as serious as ingestion I think so far, but just as ugly sometimes. The eczema and asthma that ultimately follows is a real pain.
    Actual ingestion for my child is a quicker mounting of the dreaded symptoms and pretty obvious, but hard to tell the difference sometimes!


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