From the archives. Published in Allergic Living magazine, Fall 2005.
TREVOR SCHOFIELD is one lucky guy. We are sitting at the Schofield family’s dining room table with his mother, Diane, discussing how he has outgrown his peanut allergy. Now in Grade 12, Trevor actually has to eat peanuts to build his tolerance. The talk turns from his newfound life of liberation to what life was like as a teenager at risk of anaphylaxis. In the course of discussion, an uneasy truth emerges: Trevor was taking risks well before his allergist pronounced that he was no longer peanut allergic.
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 traveled 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 jeans pockets. “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.
A major problem is that teenagers, after all, will be teenagers. They act impulsively and sometimes take risks – whether it’s driving recklessly, experimenting with drinking or drugs or – in the case of the peanut or nut allergic – going with friends to the local doughnut shop, the one brimming with allergenic food.
Next: The invincible teenage attitude
Recent medical studies have confirmed what many parents long suspected: teenagers’ brains are wired differently. In fact, the prefrontal cortex of the brain, the decision-making nerve center, is the last part of the brain to develop, usually not fully mature until 25.
Ham Pong says it’s a potent combination: a developing brain, raging hormones (also affecting the brain), and that unforgiving force known as peer pressure. This confluence of factors can lead to irrational behavior in a child who used to be so predictable and reliable.
“There is a feeling of invulnerability that teenagers tend to have,” says the doctor. In teens with serious allergies, “if you ask them what the risks are, they know. But are they concerned? Not so much. It doesn’t register with them.”
KATHLEEN BLAKE is exquisitely sensitive to peanut and is also allergic to nuts, wasp stings and eggs. She also has asthma, triggered by grass and pollen. At a mature 17, she confines her risks these days to her moves on the soccer field and basketball court. The sports-obsessed student is in Grade 12 at Bishop Smith Catholic High School, the same school Trevor attends. She is one teen who is vigilant about avoiding her allergens and keeping her epinephrine at the ready in her pencil case. But she concedes that in the early grades of high school, she too, had lapses.
“I wasn’t always that serious about my allergies. Sometimes the EpiPen would be locked in my locker.” Kathleen’s attitude changed overnight in September 2003; she and all the students at Bishop Smith got a tragic wakeup call.
A Grade 8 student at their shool anaphylaxed from food that was accidentally exposed to one of her allergens in the cafeteria. She died a day later. The student was Sabrina Shannon, the teenager for whom the new anaphylaxis law in Ontario is named.
Sabrina’s death had a powerful impact on most of her fellow students, especially those who had also experienced anaphylactic reactions. “It freaked me out,” says Kathleen. “I’d never had anyone I know die of it [anaphylaxis].”
Clint Young, who recently transferred from his job as vice principal at the school, says, “the silver lining in the tragedy is that all you have to say to kids at Bishop Smith is ‘Sabrina,’ and their heads go down. It is the most powerful tool that staff there have. It’s a shame to say that it took a tragedy for us to really focus our students, but that is the same in any tragedy – whether it’s a drinking and driving tragedy or a workplace tragedy. It is a powerful thing to reflect on.”
Tragedy also led the school officials to reassess the food allergy policy. Bishop Smith has since instituted one of the most rigorous anaphylaxis plans in the country. At-risk students have a designated “buddy” – a friend who is fully versed on the symptoms of anaphylaxis and how to use an EpiPen, and who knows to get help at the hint of a reaction. Posters of the students and are in the staff room, the prep room and in the cafeteria’s kitchen.
All staff -from teachers to coaches and bus drivers – are trained on the use of the auto-injector (both the EpiPen and Twinject brands), students bring in spare auto-injectors for the office and all teachers of each at-risk student are directed to ask that student where he or she is carrying an auto-injector – whether it’s in a purse compartment, a jeans pocket or a pencil case. Trevor may have managed to evade Young’s system of spotchecking allergic students for their epinephrine “pens”, but he was still highly identified among staff as a student at risk. Kathleen’s mother, Alice Blake, finds the procedures a big improvement. “I don’t think there’s much more they could do to make it safer. Anything else would be drastic.”
Besides Sabrina’s death, Kathleen has another motivation for vigilance about her allergies. She clearly remembers what a reaction feels like – her last anaphylactic episode was at the age of 12. The reaction also made a profound impression on her good friend, Tessa Cotnam, 19, who had invited Kathleen and other friends over to her house on the day Kathleen ate a peanut-filled candy by mistake. As Alice rushed her daughter to hospital, a crying Tessa ran “to tell my parents that I thought I had killed Kathleen.”
Next: The Power of Peers
Ham Pong and other experts say the experience of knowing what a reaction feels like helps food and sting allergic individuals to grasp the seriousness. But, in fact, many teens do not know the feeling. Many were diagnosed through allergy tests as toddlers or through reactions as infants; they have no memory of this. Such teens “don’t necessarily believe they’ll react, or they only half believe it,” Ham Pong says. “It’s just something they’ve been told by their parents.”
Young has seen this as well from the educator’s perspective. “Because they can’t recall ever having one, they have that feeling of invincibility – I’m not really going to have a reaction, eating this ‘may contain’ must be OK.”
IN FAIRNESS TO teenagers, having allergies on top of everything else that’s going on inside a maturing body and brain is not easy. And parents should not underrate teenage peer pressure – adult office politics pale in comparison. “In high school, if you don’t have the right clothes and the right shoes, you get picked on,” says Anna Woollam, a Grade 10 student who was Sabrina’s best friend. “I’m not one of the kids who gets picked on, but I see it all the time.”
Given the rigid fashion ethic of the school hallway, many of the teens interviewed say they would never dream of wearing a fanny pack or a belt that holds an auto-injector. Keely Hutton, a Grade 8 student at Bishop who’s highly allergic to peanuts and tree nuts is, however, delighted with the sporty little purse that her mother bought for her – not only does it look cool, it will accommodate her two EpiPens.
Teenagers, allergic or not, want to fit in. Kathleen, Trevor and Keely all separately acknowledge that none of them wants to feel different from the other students. Kathleen is getting better about speaking up and questioning food servers about her allergens (before she would ask a friend to ask). And she’s not shy about explaining her allergies when people ask about them.
Still, she says, “I get embarrassed when I’m in a big group of students and a teacher asks: ‘Do you have your EpiPen with you?’ I feel like I’m 5. Nobody else gets asked, ‘Did you bring extra socks?'” She knows teachers are just doing what they’re supposed to do. She would just like to see a little more sensitivity, such as calling her aside.
Social situations are also difficult for teenagers with allergies to navigate. The year her soccer team won the championship, some of Kathleen’s teammates organized a celebration at the Eastside Mario’s restaurant in Pembroke. Kathleen couldn’t enter that establishment with peanut shells on the floor any more than she could join friends when they go to the local Dairy Queen. This was an oversight on the part of the organizers, and Kathleen isn’t the type to whine about such incidents. But they are frustrating and, at times, hurtful.
“Sometimes I get left out of things, which kind of sucks,” she says. “But I’ll say, ‘whatever, it’s no big deal’. But sometimes I do care. Maybe I sometimes act tougher than I am because of allergies.”
Keely Hutton is only 13, but already her mother is realizing that teen parties are an issue for her daughter. For instance, the mother of one of Keely’s friends, who was hosting a party, said it wouldn’t be wise for Keely to come. They were going to serve a Dairy Queen cake and other treats might have nuts or peanuts as well. Keely understood that her safety likely was an issue – as a competitive gymnast, she has broken into hives just from making contact with a balance beam that had been touched by a girl who had eaten peanut butter. Cindy also didn’t want her to attend the party if it wouldn’t be safe.
But it was wrenching to watch. “Keely’s usually good-natured, she knows she has to deal with her allergies,” says Cindy. “But that time, she said: ‘Mom, this is what my life’s going to be like, isn’t it? I won’t be able to go to parties.'” This has made Cindy and her husband realize that, just as Keely hosted most of the sleepovers with friends as a little girl, the social solution is to have Keely host more of the parties in the safe environment of the Huttons’ home.
Dating also presents challenges for the food allergic teen. Alice Blake jokes that boys Kathleen has brought home to meet the parents tend to be grilled – not so much on their intentions – but on whether they’ve eaten peanuts or nuts. They are politely, but firmly, reminded that they can’t do so around Kathleen.
Next: Parents Can Be Proactive
THE CHALLENGES facing allergic teens are manageable. Even highly allergic students such as Kathleen and Keely are stars in their respective sports, competing province-wide; allergies have not held them back. As journeys with teammates on buses present food issues, their parents have become veteran chauffeurs, travelling with their teens alongside the bus in the family car.
Kathleen, who plays soccer and basketball in both high school and women’s community leagues, has even graduated to bus trips with the other kids. A highlight was a class trip to New York last year. A teacher who was to chaperone on the trip contacted Alice to see which restaurants would be considered safe, and what extra precautions to take. For the bus ride, students were told to not bring anything with peanut because “some people” were allergic. (Kathleen appreciated not being singled out.)
For teens who can’t recall an allergic reaction, it is a bigger job getting them to admit they may be very much at risk. From experience dealing with teenagers, Young thinks part of the solution is for parents and educators to make sure there is good awareness of the risk of anaphylaxis within schools. Young called Bishop Smith’s campaign “the safety and awareness” program. The idea behind this is that the higher the level of awareness of allergies within the whole school populace, the greater the level of safety.
Parents need to be proactive about making sure measures are in place to protect older children at their high schools. But the experts say they also must keep reminding teenagers to ask about allergens, not to risk “may contains” and to find a means of carrying their auto-injectors. Young says that, above all, it is essential to get teenagers to buy into taking responsibility for their own conditions.
The approach he uses is from the school official’s perspective, but it works for a parent as well. Young has said in a friendly way to groups of at-risk students, “Guys, we can only do so much here. You’re 14, 15, 16, some of you are 18. I’m not going to walk around and hold your hand like we did in elementary school. We are not going to make a table in the cafeteria peanut-free and have you guys sit there because we know you don’t want to do that.
“At your age, ultimately, it rests on your shoulders. You know what you can eat, and what you can’t eat. You know that if you go through the cafeteria line, there are questions you have to ask. It is your responsibility.”
Ham Pong adds that as high school brings with it new friends, a parent should try casually making the new acquaintances aware of the allergy – in case the teen has been reticent to do so. Possibilities include ordering a pizza and mentioning that you’ve checked to find out that it’s peanut free or reminding a teen on the way out the door about his auto-injector.
As nothing is more important to teens than the opinions of their peers, friends can become allies in keeping your adolescent vigilant about allergies. Kathleen’s schoolmates won’t even let her eat a homemade sandwich in the cafeteria if she has forgotten her EpiPen in her locker. And her good friend Tessa has never forgotten how seriously ill Kathleen took from one tiny candy. “Sometimes when we go to eat someplace, I’ll say: ‘do you have it [the auto-injector]?’ But now, she always does.”
First published in Allergic Living magazine.
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