Trish Calon could handle things at home—but kindergarten would be another story.
So when her daughter, Trinity, started school two years ago in Kingman, Alta., Calon made a point of talking with the teacher about her daughter’s life-threatening allergy to peanuts and tree nuts.
The conversation would surprise most school administrators and parents, who’ve grown accustomed to no-nuts policies at schools, daycares and other places where children gather. Calon didn’t want Trinity’s school to ban peanut butter or anything else containing nuts. She simply wanted the teachers to know who her daughter was, where her epinephrine auto-injector (EpiPen) was located and how to use it if Trinity was in trouble.
“The best thing I can do is prepare her for later in life, to make her accountable for her allergy,” Calon says. “I’m not always there with her. I want her to be responsible and question everything.”
It’s a view that’s becoming more common as some parents, physicians and even the national association for anaphylaxis awareness question whether food bans actually work.
Since the dawn of widespread anaphylaxis awareness in the 1990s, the proportion of Canadian children with food allergies has continued to grow—dramatically. Some studies suggest the number has doubled over the past decade, and an estimated two to five percent of our population now has a potentially life-threatening food allergy. Although nuts get most of the bad press for anaphylaxis, the condition isn’t only associated with peanuts and tree nuts; other common triggers are dairy, insect stings, drugs, latex and even exercise.
Protecting anaphylactic kids
While no one disputes this is a serious problem, there is great debate over who, exactly, should be responsible for keeping allergic children safe. Does it take a total school ban on any food with the potential to kill, even those labelled “may contain” for the manufacturers’ own protection? Or does the responsibility fall to allergic children and their families to find ways to cope with the ever-present danger?
Sabrina Shannon was just a few weeks into her first year of high school when she ordered fries from her school cafeteria in Pembroke, Ont. The 13-year-old, who was allergic to dairy, didn’t know the fries had been contaminated with cheese. She died the next day from food-induced anaphylaxis. For the next year and a half, her mother, Sara Shannon, lobbied for a law that would require all Ontario schools to have a greater duty to protect allergic students, including “reducing the risk” of exposure to potentially allergic foods. The law was passed in 2005 and came into effect in 2006. It’s the first and only one of its kind in Canada.
Still, Sabrina’s Law—which stops short of banning any allergic foods—didn’t go far enough for a group of parents in Woodbridge, Ont., who last December complained to the Ontario Human Rights Commission. They argued their children’s anaphylactic allergies are a “disability” that should obligate their school to screen lunches for peanuts, eggs and any other food trigger.
A loaded weapon?
Parents who lobby for food bans often refer to foods that trigger anaphylaxis as “loaded guns”—a term that makes Laurie Harada cringe. As the mother of a 14-year-old with life-threatening allergies, and executive director of Anaphylaxis Canada, she is well aware of the potential for death, but says banning foods only creates fear. “Education,” she believes, “is the key to keeping kids from having their lives threatened by allergies.”
And the reality is that death from anaphylaxis, triggered by food alone, is extremely rare.
“Too many families are held prisoner by their child’s food allergies, and this is completely and utterly unnecessary,” says Stuart Carr, a widely respected paediatric allergist at Stollery Children’s Hospital in Edmonton. He points to a recent British study that estimates children under 16 with an established peanut allergy have about a 1 in 800,000 chance of dying from their allergy.
“My patients undoubtedly face a greater risk simply driving to my clinic to talk to me about this issue,” he notes, adding there is a misconception that any exposure to peanuts will cause death. Carr says that except in very rare circumstances (such as in an airplane, which is a confined space with recirculated air), a child must actually ingest the protein in the peanut to fall ill. He points to a study on peanut exposure that found superficial contact, such as being near a cracker spread with peanut butter, would produce an allergic response but not anaphylaxis.
Drawing battle lines
While most parents have come to accept no-nuts policies, it’s been the experience of Calgary dad Jason Bruce* that people are less understanding when other foods are the trigger for anaphylaxis.
Bruce’s son has a deadly allergy to dairy. And given the sheer number of kids today with food allergies (not to mention the rising rate of childhood obesity), he felt it was reasonable to ask his son’s school to stop serving pizza as a reward or for fundraising events.
Few parents agreed. Bruce says one parent’s reaction, in particular, gave him a glimpse at the ignorance surrounding anaphylaxis. “This woman was willing to go to the utmost limit not to have any trace of nuts come into the school via her kid’s lunches, but then told me to order pizza without cheese for my son — as if he was lactose intolerant and not anaphylactic to dairy! She was dangerously unaware of the risks of cross-contamination.”
Bruce says the nut-free lobby has been so vocal that it has created a level of “allergy fatigue” among parents and, in doing so, put children with other life-threatening allergies at risk. He believes better education, not simply banning one food or another, is a safer approach.
“As a parent of a child with a milk allergy, if another child needs a couple of pieces of cheese at lunch, I’m OK with that. My child has to learn to sit beside that child and learn to wash his hands and wash his desk,” he says. “But, at the same time, if I feel I need to send in almonds for calcium, then the child with the nut allergy has to be aware that he too has to wash his hands, wipe his desk and not invade my son’s space and his snack bag.”
Paediatric allergist Stuart Carr agrees that banning peanuts does not guarantee an end to deaths from anaphylaxis. “Every food is a potential allergen,” he notes. “So people say, ‘Well, how about we just remove the big one, like peanuts?’ OK, but do we have any evidence at all that that makes kids with peanut allergies safer? The answer is no.”
*Name changed by request.
Risk of rebellion
While the anaphylaxis debate is most often centred on protecting young children, teenagers are more likely to die from a food allergy as they struggle to free themselves from the rules parents have imposed to keep them safe, and to fit in with their non-allergic friends.
When Nancy Berman’s son, Ben, turned 12 last year, she says, “Like clockwork, he stopped wearing his EpiPen and he stopped wearing his MedicAlert bracelet.” The Montreal mother felt herself losing control over Ben’s condition.
Anthony Ham Pong, a paediatric allergist in Ottawa, sees teenagers in denial all the time, especially girls. One parent told him that her daughter “would rather die than admit she was having a reaction.”
The cause, Ham Pong says, is teenagers’ sense of immortality coupled with naïveté: Few remember the heart-stopping drive to the hospital after their first taste of peanut butter left them gasping for air. “Their parents have been very cautious, kept them away from nuts. Well, do you think a teenager remembers what happened to them at three? They haven’t got the fear because all they know is this is what their parents told them.”
That attitude of rebellion is another reason why simply banning nuts at school can’t guarantee the safety of allergic kids.
Careful, not fearful
That isn’t to say that schools and communities shouldn’t be involved, Harada says. “The question is really what’s fair to expect of others. I think what’s fair to expect of others is that there’s a willingness and an openness to at least talk and try to understand the strategies that are required to keep kids safe.” From her perspective, that includes many things: getting into the habit of washing hands after meals to prevent the spread of trigger foods, educating teachers and other students and getting parents of non-allergic kids onside.
Progress has been made on that front over the past 10 to 15 years, she notes, pointing to the policies now in place in many schools, as well as the enactment of Sabrina’s Law. “It’s a shared responsibility. You have to be careful, not fearful.”
Alberta parent Trish Calon says her goal is to prepare eight-year-old Trinity for a lifelong journey with food allergies—and that starts with saying no when another kid brings homemade treats to class.
“It is scary to think something like that could kill your child,” she says, “but [allergen-containing foods] are all around. There’s no way of getting away from it.”
What is anaphylaxis?
Anaphylaxis is an extreme allergic reaction—the body’s most vigorous defence against a substance it deems harmful. The immune system goes into overdrive, firing out a chemical cocktail that can produce anything from a relatively minor tingling and swelling of the tongue to vomiting, difficulty breathing, a drop in blood pressure, loss of consciousness and death.
When anaphylaxis hits, an emergency shot of epinephrine will buy time until medical help arrives, and it can be administered by anyone who’s had a bit of prior instruction and access to the allergic person’s auto-injector (EpiPen is a widely used name brand).
The asthma connection
Almost every death from anaphylaxis can be blamed on one of two things, says Stuart Carr, a paediatric allergist at Stollery Children’s Hospital in Edmonton. Either the victims didn’t have an EpiPen nearby or they suffered from asthma.
“While food was the trigger that might have induced the episode, if they didn’t have asthma that was inadequately controlled, they wouldn’t have died.” (The Ontario teen for whom Sabrina’s Law is named also suffered from asthma.) Carr says many children with food allergies, especially teenagers, have never undergone lung testing and have no idea their lungs don’t function normally—and often what appears to be an anaphylactic reaction to food is really the body having an asthma attack.