On March 9, parents of children enrolled at Edgewater Public School near Daytona Beach, Florida, called the media and staged a protest, angry that an allergy-management plan implemented by the school board to keep a 6-year-old peanut-allergic girl safe could take away from their children’s learning time – and that the child should stay home instead.

The events have galvanized the allergic community and underscore the importance of educating those who do not understand the challenges of daily living with a food allergy.

The new safety procedures

According to news reports, the allergy-management plan includes the following policies and procedure:

• Students must wash their hands at least twice a day (before entering the classroom in the morning and after lunch).
• Teachers must regularly wipe down desks.
• Peanut-free zones throughout the school campus and the cafeteria
• Snacks banned from the classroom; classroom parties must not include treats.
• Students were originally required to rinse out their mouths before entering the classroom, but this rule has reportedly been removed from the allergy-management plan; students now must wipe their faces with a wet cloth.

Allergy-management plans like this one are poised to become the norm. Earlier this year, President Obama signed the Food Allergy and Anaphylaxis Management Act (FAAMA), which calls for voluntary national guidelines to help schools manage students with food allergies.

In the past decade alone, the prevalence of food allergy, once an uncommon condition, has skyrocketed. The Food Allergy & Anaphylaxis Network (FAAN) estimates that about 12 million Americans – 4 percent of the population – now contend with the disease. The Canadian rate of food allergy is estimated to be comparable. Peanut allergy alone has doubled in young American kids.

The backlash

Some parents of students enrolled at the elementary school argue that:

• The time it will take to implement the plan – hand-washing and desk-wiping, for example – will take away valuable learning time.
• The peanut-allergic student is receiving special treatment that their children don’t receive.

Parents are also up in arms about a peanut-sniffing dog that was brought into the school over spring break.

“You can’t take peanut butter and jelly – or any right – away from my child,” yelled one angry protester to the mother of another peanut-allergic child at the school. “Keep your child at home!”

Along with the protest, which has been covered by local and international media, the parents have been handing out flyers to the community.

What the school board says

The school board argues that:

• Under the Americans With Disabilities Act (ADA), the district is legally obliged to accommodate the student’s medical needs.
• The policies put in place, such as regular hand washing, are good hygienic practices that need not be overly time-consuming.
• The policy regarding classroom parties being free of treats or snacks was a decision made by teachers for general health and wellness reasons.
• The peanut-sniffing dog, according to one report, was brought in to comply with the student’s ADA medical plan, which called for a dog to search the school. Schools are required to comply with such plans.

The allergy community’s response

Not surprisingly, the allergy community has been watching the situation closely.

On March 23, FAAN and the Food Allergy Initiative (FAI) released a joint statement that highlighted the need for increased education about the challenges of living with a food allergy. The organizations also expressed concern about the psychological impact of the protests on the first grader: “Studies have shown that living with a life-threatening food allergy can have a psychological impact, and a public display in this manner may have a detrimental effect on children with food allergies.”

Parents of children with food allergies are also expressing their views on the Florida events. “Here we sit, on a fence, between a rock and a hard place, because of unawareness and ignorance,” says a member of the Allergic Living Forum. “How much noise to make to keep our kids safe is such a hard question.”

“The [protesting] parents definitely took it too far,” says another Forum member. “If their concerns weren’t being addressed, they themselves could have contacted FAAN to see if they could recommend a compromise. Picketing and protesting one child is insane.”

The Allergic Living Facebook page has also received a lot of feedback on the issue. “It interests me that the main complaint from protesting parents is that hand and mouth washing takes away from education time,” says one of Allergic Living’s fans. “Handwashing is a normal and accepted way of cleaning yourself after eating, so I am baffled as to why parents would not want thier kids to learn the importance of that. Further, kids will learn about community support for the safely and wellbeing of people who live, play, learn and eat within their community.”

As well, members of the community are showing support on the Facebook page here for the family of the child who is at the middle of this allergy battle.

Posted March 28, 2011

Is there anything more gut churning than thinking about your anaphylactic child sandwiched among 200 kids eating 200 snacks that may contain who-knows-what in a sprawling playground supervised by three adults? Well, hello recess. And there’s no getting around it, twice-a-day, every day, now that Lucas has started Grade One.

Ah, Grade One. The inauguration of my eldest as an all-day student and the final transition from child to kid. This is a time to forge life-long friendships, to read, multiply, lose a first tooth, discover wall ball and find out that the F-word isn’t “fiddle”. (OK, Lucas already learned that at camp this summer, but I’m sure his expanding vocabulary is about to detonate in many new directions).

For most parents Grade One is a rite of passage as grand as a first step. But for me, it’s more on par with Lucas’ first concussion.

Until now I’ve have found ways to placate most of my allergy fears and work around most allergic challenges. For the last two years of kindergarten, I stood guard every morning at the door to Lucas’ classroom ensuring that the snack of the day was in fact peanut-free and nut-free, in keeping with my copious communiques to parents and meetings with school staff. One time I went so far as to follow one of the mothers back to her house after dropoff, to check the ingredients she was using to make her special “nut-free” birthday cupcakes for little Daniel. I know, I’m crazy. But it did turn out that until my impromptu visit, the mom in question wasn’t planning to use a new jar of jam or the unused side of the butter, or to double clean her baking utensils. After that, I got the school to institute a “no baked goods from home” policy.

But now Lucas has entered big kid turf, where everyone brings their own snacks and eats them at leisure during recess, leaving Mommy Dearest with no choice but to back off. And I can’t pretend this comes easy.

In a life with anaphylaxis, so it goes that each new liberation makes way for new challenges. I am more liberated because Lucas is now a relatively responsible, highly communicative little boy with an acute and positive awareness of his allergies. I no longer have to deduce his signs and symptoms. If something is wrong, I can rely on him to tell me or his teachers how he feels. He is strong, gung-ho about school and ready to spend the day away from home. The exception is the lunch hour, which I’m just not ready to relinquish, despite my son’s pleas to stay and eat with his friends. “Mom, you don’t have to worry about me, I love Grade One and it’s cool to stay for lunch,” has been his mantra since day two.

Cool for whom? Well, I suppose it’s cool that he feels so confident, but there are two lunch supervisors in a makeshift lunchroom that squishes more than 70 kids onto the floor to forage their over-stuffed food packs in 20 minutes. They spend the rest of the hour in the schoolyard with the remains of their mostly unidentified lunches stuffed into their pockets.

In Grade One, Lucas is no longer relegated to one classroom for 2½ hours every morning, but instead moves around the school throughout the day, making it imperative that he wear his EpiPen from morning till late afternoon with backups placed in other locations, including one strapped onto the recess monitor’s safety apron. Until now, my son only had the auto-injector belted on for a few hours every morning.

This is new territory we’ve entered. He now has several teachers and recess, which is monitored by a rotation of staff. It is more important this year than ever that every teacher in the school to be as trained as well as his own. (You won’t be surprised to learn that I led a training session in June).

Although Lucas understands the importance of not sharing snacks, and the school (with my urging) has been great about pushing that point with all the kids, it’s still a crapshoot out there in the mean streets of the playground. Peer pressure can be a powerful lure and let’s face it, teachers have plenty to contend with beyond looking for snack-sharing hooligans, allergy bullies or peanut-wielding rebels. Much of this would be far too subtle for them to notice any way.

So in effect, Grade One means that, for the first time, I am entrusting my little guy to take care of himself, to speak up for himself and eat only the food that I pack for him. That’s a big leap of faith for any parent, dealing with allergies or not.

I know when I walk away from the school in the morning, I share that nervous smile with the other moms – the one that mixes anxiety, pride and freedom into one common facial expression. But there’s an extra thump in my heart that makes letting go all the more profound for me.

Now if I can only stop spying on recess (kidding!).

She was indignant and didn’t know what she’d done wrong. “They can’t treat me this way,” she said.

Her mother wasn’t pleased to hear of a student disciplining another student, but she had a more immediate concern. Her severely peanut-allergic daughter had been alone while eating.

“Where was your EpiPen?” Cameron asked. The reply: “In my backpack.” And where was that? “In the classroom.”

“If she’d had a reaction in the hall, no one would have been there to help her,” says Cameron. The previous fall, Cameron first learned that adults weren’t supervising the lunch breaks at the Ottawa public school. Instead, pairs of Grade 5 or 6 students oversaw the younger children as they ate at their desks. In case of an emergency, these monitors would have to run and seek out an adult.

Thousands of miles west, in Victoria, B.C., Caroline Posynick can relate. She became a convert to allergy advocacy in 2006 over the issue of student lunch-monitoring.

She had been blissfully unaware that, in a school that ran from kindergarten through Grade 7, lunch for younger grade children was supervised by kids from the eldest grade. She also didn’t realize that the teacher had decided to keep her son Griffin safe by isolating the 7-year-old at the crafts table.

On Valentine’s Day in 2006, “my son was sitting at this special table. A kid who was really, really active got up and put some peanut butter on his finger and then put it on Griffin’s arm,” Posynick says. “He wanted to see what would happen. This occurred with kids watching kids, so they couldn’t stop it.”

There was panic in the room, Griffin froze, and the monitors hustled him off to the teachers’ staff room to get his arm washed.

When Posynick and her husband got to the school they found Griffin with a huge hive on his arm. Benadryl was enough to handle the contact reaction. But the boy’s sense of upset did not go away nearly as quickly.

Incidents with lunch supervision are not hard to find among the parents of food-allergic children. They illustrate that, for all of the advances such as Sabrina’s Law in Ontario (an act to protect anaphylactic pupils) or B.C.’s ministerial framework on anaphylaxis, and for all the allergic community’s advocacy on risk reduction and readiness for emergencies, gaps remain in the protection of food-allergic children.

Within Canada’s public elementary schools, there’s a patchwork of student monitors and adult lunch supervisors, but even with the latter, the person in sight line of the child may not be trained on giving an epinephrine auto-injector. Who’s watching the kids depends on a school board’s policy and then, in turn, on how an individual principal handles (and applies budget to) lunch supervision at his or her school.

For instance, in Vancouver, the norm today is paid lunch assistants, but a ferry ride away in Victoria, students not old enough to babysit frequently patrol lunch in the class.

In 2005, Anaphylaxis Canada did a survey of its online registry about allergy policies in Canadian schools. Of the 678 parents who responded about their child’s public elementary school, 28 per cent said the school relied on student lunch monitors, 43 per cent said school staff supervised (sometimes in combination with students) and 33 per cent had paid lunch supervisors. At some schools, there were also a small percentage of parent volunteers assisting.

Most public elementary students (73 per cent) ate lunch in their class as schools often lacked the space for lunchrooms. “You do have to consider what the principals are dealing with,” notes Laurie Harada, executive director of Anaphylaxis Canada. “They’ve had cutbacks, the best that many principals can do is to have someone to wander the halls and poke their head in and monitor the kids.” That said, she adds: “too much of this is ad hoc, and schools need to think through this.”

U.S. ‘All Over the Map’

In the United States, student lunch volunteers are less the issue, but again – despite a growing number of anaphylaxis laws among the states, there are gaps. Lunch is usually eaten in a cafeteria or lunchroom, making it possible for fewer adult eyes to survey a larger group of kids.

Yet anaphylaxis prevention practices and auto-injector training can vary from district to district, and cafeteria to cafeteria.

Lunch supervision “is an all over the map situation in the U.S.,” says Deb Scherrer, vice president of education for the Virginia-based Food Allergy & Anaphylaxis Network. “Sometimes it’s a teacher, sometimes it’s a food service worker, sometimes it’s a parent – it may be paid staff or volunteer.”

*Name changed by request.

UNITED STATES

FAAN’s Back-to-School Tool Kit
FAAN’s Food Allergy Action Plan
Food Allergy Initiative’s Authorization of Emergency Treatment Form
FAAN/FAI e-learning resource, comprehensive tool for teachers. www.allergyready.com
Federal 504 Plan
AAFA on the Americans with Disabilities Act (ADA)
National Assn of School Nurses’ Anaphylaxis Provision of Care documents

CANADA

Comprehensive resource - Allergy Safe Communities site.

• Allergy Safe Communities’ Emergency Plan for EpiPen
• Allergy Safe Communities’ Emergency Plan for Twinject
• Sample letter from principal
• Sample letter from teacher
• Steps for school anaphylaxis plan
  

Also: Canadian School Boards Association publication:
Anaphylaxis: A Handbook for School Boards (New Edition)

Asthma Action Plans

• Alberta’s Asthma Action Plan (Canada)
  
• The Lung Association’s Action Plan (Canada)
• AAFA’s Student Asthma Action Card (USA)
• American Academy of Family Physicians Asthma Action Plan (USA)

Allergic Living‘s School Articles

• Food in the Classroom – click here
• Allergic Living’s award-winning article – Sabrina’s Law
• Hear Sabrina – Her moving CBC radio documentary – A Nutty Tale
• FAAMA: Inside the U.S. Food Allergy Law here
• Laurie Harada: Talking to School Officials here
  
• Laurie Harada: Off to Kindergarten - here
• Laurie Harada: If Your Child is Bullied - here
• Food Allergy and the Risky Teenage Years - here
• Sabrina’s Law: The Girl Who Inspired Change - here
• Who’s Watching Lunch at School? New excerpt here
  
• Off to College with Allergies - here
• Teens Talk: Life with Allergies - here
• Samantha Yaffe: Grade 1 and Letting Go – click here
• Kids, Anxiety and Anaphylaxis - here
• Backlash Against School Accommodations - here
• Air Quality at School - here
• The September Asthma Spike - here
• Sara Shannon’s Journey with Sabrina’s Law - here
• Reader’s Story: Sabrina’s Law Success - here
• Sabrina’s Law in Context – For a Kid, Dairy Allergy is a Life Changer

State and Provincial anaphylaxis laws, policies and guidelines, click here.

IT DOES sound, if not “hysterical,” then at least over the top. One single peanut is noticed on the floor of a school bus and the 10-year-old riders are all told to get out immediately, because of food allergy risks.

The anecdote appears in an opinion article, written by Dr. Nicholas Christakis, a professor of medical sociology at Harvard Medical School, and published last December in the British Medical Journal. Christakis uses the bus incident, which took place at his children’s school in Massachusetts, as a starting point for this thesis: accommodations made for food-allergic students are an unnecessary “charade” based on fears that “represent a gross over-reaction to the magnitude of the threat.”

As an expert on how health conditions affect others in one’s social network, Christakis goes a big step farther, raising the spectre that school responses to food allergies bear “the hallmarks of mass psychogenic illness.” In other words, what used to be called “epidemic hysteria”: the eruptions of fear in towns, schools or hospitals based on the threat of contamination involving, the professor says, “otherwise healthy people in a cascade of anxiety.”

His article quickly grabbed the attention of news outlets around the world. He was interviewed by Time magazine, The New York Times, the Los Angeles Times and Canada’s National Post. Media articles were circulated on websites. The blogosphere had a field day. Suddenly it was fashionable to dismiss food allergy as a made-up phenomenon.

Parents seeking accommodations for kids at school were no longer taking sensible precautions – they were portrayed as hysterical, anxiety-ridden and even needing to “feel special”. Food allergy groups and parents of kids living with the risk of anaphylaxis were put on the defensive, while leading allergists only got to add their brief comments on the media debate as responses to Christakis’s statements.

The fallout from one editorial was remarkable. Yet in writing of needless hysteria, Christakis in fact increased the anxiety within the food allergy community. The widespread attention has had a polarizing effect on those on either side of the school accommodations issue, and now, after many advances have been won to protect students at risk of anaphylaxis, at least one major Canadian newspaper is asking: “Can schools bring back the humble peanut?”

Backlash, however, is not entirely new. “There have always been people who are doubtful that food allergy even exists,” says Anne Muñoz-Furlong, founder of the Food Allergy and Anaphylaxis Network (FAAN), the Virginia-based non-profit that focuses on awareness, education and research.

Of course, the condition is real, it can result in severe and even fatal reactions, and it is more common than ever. The Centers for Disease Control and Prevention in the United States last October reported an 18 per cent increase in the number of children with food allergy from 1997 to 2007. Meantime, a study from the Mayo Clinic in December found that anaphylactic reactions to food are responsible for 50,000 emergency visits each year in the United States, up from a previous estimate of 30,000.

With a rise in food allergies, particularly in children, has come a heightened awareness of the need to keep kids with the condition safe when they are away from their parents. School, of course, is where they spend the bulk of their “away” time, and where foods and snacks are part of daily life. This has led to advocacy, followed by measures to reduce the risk of allergic reactions, mandated by law in places such as Ontario, New Jersey and New York state.

“There are a lot of schools that are dealing well with these allergies,” says Laurie Harada, executive director of Anaphylaxis Canada. “And they’re not all hysterical and living in fear. It has become a part of their norm.” Muñoz-Furlong agrees, pointing out that evacuating a bus due to a peanut is a rare and extreme example. “In the U.S., we have two million school-age children with food allergies. They go to school, they participate in class parties and field trips, they’re on the bus and they are mingling – just like every other child.”

***

ALL THE SAME, the backlash has grown. The current rumblings date back to January 2008, when Harper’s magazine published an article in which writer Meredith Broussard did not mince words. “The rash of fatal food allergies is mostly myth,” she wrote, “a cultural hysteria cooked up with a few ingredients: fearful parents in an age of increased anxiety, sensationalist news coverage and a coterie of well-placed advocates whose dubious science has fed the frenzy.” She slammed FAAN for its fatality statistics that estimate 150 people a year die from food allergies, but neglected to mention that those figures, which emanated from a Mayo Clinic study in Minnesota, were derived using widely accepted methods.

When Christakis came forward to similarly cast doubt on the wisdom of school accommodations, his words carried considerable weight in the media, since he wrote as a Harvard professor and physician, and did so in the august BMJ. Within the scientific community, however, his views quickly became divisive.

In a letter to the BMJ, Dr. Jonathan Hourihane, a well-regarded Irish pediatric allergist, took issue. Hourihane said, for instance, that the professor had distorted the question of false positive allergy tests: “There is no such thing as ‘meaningless’ allergies to nuts, or else we have to accept the terms ‘meaningless’ asthma and ‘meaningless’ cancer,” he wrote.