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 Executive Director of Anaphylaxis Canada, www.anaphylaxis.ca

Published in Allergic Living magazine, Summer 2005
© Copyright AGW Publishing Inc.

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Over the years, I’ve spoken with several parents who have been reluctant to have their children carry auto-injectors due to fears that they would be teased, bullied, or even “traumatized”. Many admitted that there had never been any negative encounters, and that their school communities had been very supportive. I encouraged these parents to try different tactics with their children, which would get the buy-in of the kids. They often came back to update me on their progress, pleased by the fact that, with coaching, their children learned to accept this responsibility, and had not been singled out nor become more fearful because of carrying an auto-injector.

What I’ve come to realize in dealing with my own son, Julian (now 13), is that sometimes it’s us, the parents, who are not ready to have our children accept more responsibility. Why is this? Because we’re fearful that the child may not comply with a rule, or make a mistake, or that someone else will inadvertently put him at risk. But what messages do we send our kids when we don’t allow them to learn for themselves?

On several occasions, I’ve had to take a step back and quell my own fears, as Julian begins to spread his wings. When he was 11, he came home with a note about a two-day trip his Grade 6 class would be taking at the end of the school year. My anxiety spiked as I worried about his readiness to manage on his own, given his multiple food allergies. Although he had stayed over at friends’ homes many times, he was never interested in staying at an overnight camp. This would be a new experience.

I worried about the staff being able to accommodate his allergies, and whether Julian would feel comfortable seeking help. As my blood pressure continued to rise, I came up with the perfect solution: I would go as a parent volunteer. Even though my plan was to ask that he be put in a group with another parent volunteer, Julian was horrified by the idea. It was okay for other parents to attend, just not his parents, and especially not his mother.

Things worked out. While he was away, I managed to calm down with a lot of self-talk: The teachers have been trained, we’ve checked things out with the food services staff, he has his medication with him, and he’s close to a hospital if anything happens. Julian returned bursting with stories about what he had learned and how much fun he had bunking with his friends in a dorm, and how the food services staff went out of their way for him. I was proud of us both – Julian for embracing this new experience with gusto, and me for reaching another milestone with my sanity intact. But what impressed me the most about Julian was what he learned about himself during the trip.

His class had watched a video about the history of the Jesuit priests who had sacrificed their lives in the name of their religion. As it played, his friend Jack whispered: “Julian, you should pray to the saints to get rid of your allergies!” (Apparently, many people had been cured of debilitating diseases after praying to the saints.) Good idea, Julian thought, but then hesitated.

Julian related having this second thought: “Maybe God had put me on Earth to help anaphylactic people. Maybe that was my job.” He reasoned that not having allergies just wouldn’t have the same effect, and wouldn’t be as inspiring. It would be “like Terry Fox running across Canada with two legs and no cancer.” In his head, he said, “Never mind God, I want to keep my allergies.”

While I was learning to let go, my son discovered that maybe it’s not so bad having food allergies, and that perhaps his purpose in life was greater. Now, when I question his ability to take on more responsibility, I think back to his epiphany. Instead of wondering if he’s ready, I tell myself, “He can do it.”

Laurie Harada is Executive Director of Anaphylaxis Canada, www.anaphylaxis.ca.

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

To subscribe or order a back issue, click here.