First tip: The great thing about asthma is that if you learn to control it, asthma  won’t control you. Some kids ask us why they have to take the controller inhaler when their asthma doesn’t seem to be acting up. This is because using that controller every day is the best way to get a “handle” on asthma; it keeps swelling and mucous away.

Grief Relief: With that control, you shouldn’t have to get out your reliever inhaler as often. But when you do need it, don’t be embarrassed. After all, it really is a relief. And consider: almost 1 out of 10 kids have asthma; you aren’t alone!

Friends: Talk to close friends about your asthma and why you take medication. In your class, you may also be surprised to discover how many kids have medication for asthma or other health issues.

Puffer: If you do need your reliever inhaler, it will work best if you use a spacer. Why? More medicine will get down into your lungs. If you’re not comfortable with your current inhaler/puffer, speak to a parent about seeing an asthma educator and your doctor, and possibly switching to a different medication. There are dry powder inhalers available that work without a spacer. Remember, getting the medicine into your lungs helps you control the asthma with the goal of using less medication. Control means you are active and doing things you love – hanging out with friends, playing sports – or maybe a guitar.

*Certified Respiratory Educators and Certified Asthma Educators help patients gain control of asthma, and COPD. For more information about the educators, visit the Canadian Network for Respiratory Care (CNRC) at www.cnrchome.net. Ingrid Baerg, RN, CAE and Angela Alexander, RN, CAE work at the Asthma Education Clinic at B.C. Children’s Hospital.

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.

In Lexington, Kentucky, a girl in the eighth grade was arrested on felony charges in April after she put peanut butter cookie crumbs in an allergic classmate’s lunch box. (The allergic student did not eat the contaminated lunch, and did not suffer a reaction.) While clearly not the first time an allergic person has been threatened with their allergen, cases usually don’t escalate to this level, says Anne Muñoz-Furlong, the founder and CEO of the Food Allergy & Anaphylaxis Network.

Following the arrest, media outlets such as the Wall Street Journal, The Globe and Mail, and various radio stations ran reports about allergy bullying. In fact, the website Wordspy.com, which tracks “newly coined” phrases, added “food allergy bullying” to its lexicon at the end of April.

Laura Bantock, who leads an anaphylaxis support group in Kamloops, B.C., knows that bullying is something many allergic kids have experienced. “I do hear of kids being taunted. To an allergic child, being threatened with the thing that they’re most afraid of, whether it’s peanut or milk, to them the perception is a very serious threat.”

Muñoz-Furlong says that food allergy bullying arises because some people aren’t aware that a speck of food could kill. “It just doesn’t seem normal that you say, ‘I could die from having a little bit of milk, or having a peanut butter sandwich.’ And because so much attention gets given to that child, so many plans and restrictions are in place, sometimes that makes the person a target for kids who don’t understand or perhaps resent the attention, or are skeptical that this is a real issue.”

Education does seem to work to help curtail bullying. Bantock’s 14-year-old daughter, Tess, an aspiring singer-songwriter who is at risk of anaphylaxis to peanuts, nuts and soy, was taunted earlier this year by some boys in her grade. “They threatened me with peanut butter. I don’t know if they had any, but they said they did,” she says. She told her teacher who, with the help of her parents and the school, explained to the boys the seriousness of food allergies. Tess believes they just hadn’t realized how threatened she felt. “They’re nice to me now. They asked me some questions about my allergies, because they were curious,” she says.

As someone who has experienced bullying, she is happy that the authorities in the case in Kentucky are taking it seriously. That teenage bully was charged with felony wanton endangerment, and will face her charges in juvenile court. “Sometimes you wonder, ‘does the government care?’” Tess says. “I don’t think prison is what you want to do – but education, or perhaps community [service] hours to help people to understand.”

First published in Allergic Living magazine, Summer 2008
(c) Copyright AGW Publishing Inc.

To subscribe or order this issue, 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.

Trevor admits that he didn’t like to feel different from the rest of his classmates. He was less than vigilant about reading food labels or asking at a friend’s house if food was peanut-free. And what about his epinephrine auto-injector? As he refused to wear the belt holding his EpiPen by high school, how had he carried it around school?

At first, he says that he shoved it into the pocket of his jeans. Then Trevor admits: “I really didn’t feel like carrying it in my pocket. Actually, I just left it in my locker for the first semester of Grade 11.”

His mother stares at him. “That’s a scary thought,” she says. “I didn’t hear that before.”

“Why would I tell you?” he says, smiling. Before and through much of Trevor’s Grade 11 year, the Schofields had travelled from their home in Pembroke, Ontario, southeast to nearby Ottawa for appointments with an allergist so that Trevor could undergo peanut challenges. He was supposed to assume he was allergic until the doctor told him (in the second semester of Grade 11) that he no longer had to carry his EpiPen. “After the first appointment, I just stopped bringing it with me,” Trevor fesses up. Did he just instantly think he was OK? “I thought I was fine,” he says.

“Dr. Schofield,” Diane says, shaking her head.

One who is not surprised by this story is Dr. Antony Ham Pong, an allergist in Ottawa. He deals with many teenagers in his practice, most of whom say they will carry the auto-injectors he prescribes. He’s quite certain that a lot don’t. He hears teens gripe about having to carry the auto-injector, about how it doesn’t always fit into jean pockets or into a girl’s small purse. “Or that it’s just too bothersome to remember to take it,” he says.

Most parents worry about their children with life-threatening allergies when they are in the early grades. They make sure they’ve learned the precautions to take: only eat food from home or approved by your parents, never share food, always carry your auto-injector. In a study of families coping with the threat of anaphylaxis, Deena Mandell, a social work professor at Wilfrid Laurier University, and her colleagues found that parents described younger children as careful about allergen avoidance. But what Mandell found merited further study was “that parents do not appear to be unduly concerned about the level of caution in their adolescent children.”

This is a mistake says Ham Pong. He cites a grim reality: “For the life-threatening allergens, the highest risk of dying is as a teenager.” This was shown in a study of anaphylactic deaths in Ontario between the years 1986 and 2000. Of the 20 deaths attributable to severe reactions to peanuts and tree nuts – most were girls aged 14 and 15. Similarly, a U.S. study released in 2001 looked at 32 fatal food reactions and found only three children under 10 had died. But 17 of the deaths, more than half, were adolescents.

It was a lazy afternoon in the residence common room – students were studying for classes, watching TV or simply hanging out with friends. Christine Creese was hungry and grabbed the phone to call a familiar number. Months earlier, the 22-year-old had discovered a local Chinese restaurant that would deliver to her dorm at the University of Toronto. Despite serious allergies to peanuts and nuts, as well shellfish, kiwi and onion – Creese was able to eat the restaurant’s delicious pineapple orange chicken.

On the phone, she went through her usual explanation of her allergies, and got an assurance that her favourite was safe from cross-contamination in that kitchen. “When it arrived, I put a whole piece of chicken in my mouth and suddenly realized that it tasted different,” recalls Creese. She spit it out, and called the restaurant back. The restaurant had accidentally sent the General Tso peanut chicken dish.

A tingling began in her mouth. Soon, Creese’s tongue was itchy and she became hot and flushed. Friends in the common room sprang into action: one called 911 while another had Creese’s EpiPen at the ready. Creese, a third-year student, used her asthma inhaler while others ran out to flag down the ambulance.

She was about to administer her EpiPen, when the paramedics arrived. Creese would end up needing two doses of epinephrine to bring her reaction under control, and spent the rest of the day in hospital.

Creese, now 24, is generally mindful of her medical condition. Before starting her undergraduate degree, she took precautions including asking for, and being given, a single room since it is difficult to enforce a peanut-free shared room, and she feels that “infringes on the autonomy of the other person.”

Food allergic students entering university this fall face a similar need to develop their own safety strategies while adapting to a new, big and autonomous school environment. Of course, any freshman has a lot to adjust to: moving away from home, living in residence, going to class in lecture halls and finding one’s way around campus.

But for those with life-threatening allergies, there is an additional layer of change – there are no parents around to explain to the professors about allergies as they did with the teachers in elementary school, and perhaps high school.

Even the most cautious student with allergies will find an environment of shared accommodations and cafeteria and residence meals an adjustment. And not every allergic student will be careful all the time – science has proven that the late teens and early 20s are a time of the most impulsive decision-making.

Throw into the mix the introduction of campus pub life, new friends and potential romantic interests, and university remains a time of learning inside the class and out. But for the allergic, it is also a time of managing a new level of risk and of learning to speak up for oneself.

With the number of teens entering university with allergies on the rise, many institutions are examining what sort of protective measures they can offer students.

The range of policies among universities and colleges is vast, but there are some encouraging advances. Carleton University in Ottawa has eliminated nuts from the residence dining hall menu and this spring became the third campus in Canada to allow its Student Emergency Response Team – a 24-hour service of volunteers trained in advance lifesaving techniques – to carry EpiPens. The practice began at McMaster University in Hamilton, Ont.

British Columbia’s University of Victoria takes one of the most proactive approaches. Three years ago, a group of students met the UVic administration to ask for improved options for those with allergies and food sensitivities. The university agreed that change was needed.

Of a population of 2,400 students who live in residence, 1,600 eat daily at campus cafeterias and restaurants. The number in residence who informed the university administration of allergies and other dietary restrictions grew to about 24 this year from three in the fall of 2005.

Traditionally, first year students at UVic live in residence, and would only move into cluster housing – a self-contained environment on campus – in second year. “We see it as the next level,” says Gavin Quiney, Director of UVic’s Housing, Food and Conference Services.

“But as we found more and more people presenting allergies, we thought this is too risky to involve them in the large institutional food program.” As a result, first-year students with severe allergies are being allowed to move into cluster housing.

So Eric Champagne, a 17-year-old Calgarian with tree nut, peanut and seafood allergies, is now living in such an apartment with two other young men with severe allergies. “Kudos to them for a great solution that goes a very long way in allaying our fears,” says Eric’s father, Gilles.