When my son, Julian, was first diagnosed with an allergy to peanut the summer before starting kindergarten, I was devastated. I felt overwhelmed by the prospect of losing him to a lowly peanut. For months, I walked around looking like a deer in the headlights, my face fixed with that ‘ohmygawd’ expression. Danger seemed to lurk around every corner as I shopped for food (like a walk in a minefield), as I sized up the mother who asked Julian over for a play date with her youngster (Can I trust you?), and as I released him into the care of his wonderful teacher every day (Will you do the right thing?).
When the phone rang during school hours, my heart would skip a beat as I wondered if it was the school office, if Julian had had a reaction. Like a low hanging cloud, the worst case scenario permeated my thoughts: anaphylaxis can cause death.
Strangely enough, my perspective on life-threatening allergies began to change for the better after I read a landmark study, published in the New England Journal of Medicine, about 13 children who had died or nearly died from food-induced anaphylaxis. Not light bedtime reading, but the article drove home why food-induced deaths occur: typically, victims had unknowingly eaten something to which they were allergic, did not have an EpiPen readily available, and most were asthmatic. These findings made me realize that I had missed the operative word in the definition of anaphylaxis – it has the “potential” to cause death – but fatalities are rare when measures to reduce the risk are carefully followed.
My husband and I conditioned Julian to carry his EpiPen, to not eat without it, and to only eat foods we had approved. We learned to be label savvy and to call food manufacturers when we were unsure of ingredients. I took on the role of educating others about anaphylaxis and what to do in an emergency. But in the early years of Julian’s diagnosis, I also learned the hard way that people sometimes did not “get” his allergies because of my anxiety-ridden behaviour. One time the mother of a classmate cancelled a play date with Julian after I abruptly corrected her technique when she demonstrated how to use the EpiPen with the EpiPen Trainer. My tone said: “This is simple to use and if you don’t know how to use it properly, he could die.”
After closing that door to my son, I became aware that my perspective of anaphylaxis, the way I’d labelled it in my head, was having a negative impact on my attitude and behaviour and, in turn, on Julian’s. I made a conscious effort to view others more positively; to understand that when you’re respectful, patient and realistic, people have a much easier time learning how to protect your allergic child.
Julian now knows how to live with his allergy. Even though many people call his school ‘nut-free’, he understands there is no such thing, that there are no guarantees. Despite increased awareness, products with peanut and nuts do slip into the school. Julian knows that he’s not in danger unless he eats something he’s allergic to and does not have his EpiPen. He knows that the smell of an allergy-causing food such as peanut butter will not cause him to have a reaction.
Now 11, my son has developed more allergies since his peanut allergy was diagnosed. People are often shocked to hear that, in addition to peanut, Julian’s list includes tree nuts, shellfish, chick peas, split peas and, most recently, soy. This makes them label my son. Poor kid, they say. What does he eat? I tell them, please don’t pity Julian. He’s a healthy kid with a healthy appetite. He just has to be careful about what he eats.
Food allergies take the spontaneity out of life, but they do not define my son. Julian has a joie de vivre, a real zest for life. He is an aspiring hockey player, an avid outdoorsman, a pianist (under duress) and a friendly boy (except to his kid sister). He knows that anaphylaxis can cause death, but also that it can be managed. He sees himself as a child, like any other, who just happens to have food allergies. Now that’s a label we both can live with.
Laurie Harada is the former executive director of Food Allergy Canada, www.foodallergycanada.ca.