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Families In Control
Posted By Dory Cerny On 2010/07/02 @ 12:17 pm In Food Allergy | No Comments
Angela Brown was anxious about returning to work after maternity leave. The day before she was to be back at her office in Toronto, she left her 8-month-old daughter, Brigit, with her new nanny for a few hours while she ran errands. “I had forgotten something and came back,” she recalls, “and that’s when it happened.”
“It” was her daughter’s first allergic reaction. Angela had fed Brigit egg yolk before but, this time, she “got hives around her mouth and then she turned absolutely beet red from head to toe.” Angela rushed Brigit to the hospital, where she was treated with Benadryl and monitored for 12 hours. The doctors recommended that the baby be tested for allergies as soon as possible. The tests would confirm the egg allergy (which Brigit has since outgrown), and would also reveal allergies to tree nuts and peanut.
“Brigit has a lot of other ones too,” says Angela, “environmental and animals. She’s very sensitive.” Angela and her husband Tad were about to discover a new way of life, built around their daughter’s allergies.
For families that include children with serious allergies, every day is a challenge. The learning curve is steep, and the stakes are high when one slip-up can mean life or death. Allergic Living spoke to three sets of parents who cope well with allergies to discover how they do it; what their secrets are to “managing” allergies. The families are from different parts of Canada, with kids of different ages, with varied lifestyles and opinions. But they share a common outlook: none are victimized or held back by allergies, and all of their children are leading full, safe lives.
Not that everyone started out with such control. After Brigit’s diagnosis in 1999, Angela felt lost. “You walk out of your doctor’s office and you’re shell-shocked. You do not know where to turn, you do not know where to start.” A neighbour introduced Angela, who now works as a sales and marketing executive with The Loyalty Group, and Tad, a lawyer who acts as in-house counsel for the University of Toronto, to Laurie Harada. Harada was leading the Anaphylaxis Education Group, a network of Toronto parents of allergic children. “That group was an invaluable resource for us,” says Tad. “Not only to gather information and practical experiences, but in creating a community that understood the issues.” The Browns are now the group’s co-leaders (while Harada today heads Anaphylaxis Canada).
For the Browns, the transition to living with allergies began with having to say goodbye to their cat, which they gave to friends. “We got rid of all of the allergens and we try to have a really clean house with hardwood floors, HEPA filters and no pets,” says Angela. They educated themselves about label ingredients, products, the dangers of cross-contamination and removed any allergen-containing foods from their cupboards.
When Garrett was born in 2001, the Browns were prepared. “We treated him as though he was allergic,” says Tad, “although we believed he wasn’t.” Tad and Angela were told to not to have their son tested until he was 3, to avoid unnecessary sensitization. With Garrett shielded from possible allergens, the Browns were lulled into a sense of comfort. When tests revealed that he, too, had severe peanut and tree nut allergies, his parents were taken aback.
Now 4, Garrett has never had an allergic reaction and is active in pre-school, swimming and sport ball. His sister, meanwhile, is in soccer, swim class, T-ball and karate, and has become a 6-year-old social butterfly, with a calendar full of play dates.
The Browns have learned that talking is the key to keeping their on-the-go kids safe. Angela makes sure that every time her daughter goes to a friend’s house, the friend’s parents know exactly what Brigit is allergic to. Angela reviews over the phone the list of what her daughter can eat, though it’s a very short list of trusted friends who actually cook for either child. She gives out her cell phone number and encourages questions. Both children wear MedicAlert bracelets and carry their own EpiPens. As well, Angela regularly trains the parents of playmates on the EpiPen.
The Browns know that the challenges of the teenage years lay ahead, but they take comfort in the fact that the groundwork of caution and vigilance has been laid. For now, at least, the daily rituals of dealing with food allergies are something the family takes in stride.
LIKE THE Browns, Claire and Pierre Dufresne of Longueuil, Que., parents of three, learned a lot from experiences with their first child. In 1991, at the tender age of three months, Olivier was diagnosed with a milk allergy, and subsequent tests revealed egg, peanut and tree nut allergies. Claire had been breastfeeding Olivier. “Then one night my husband and I decided to go out for dinner,” she recalls. “We fed him with milk formula instead, and he got so sick. It was unbelievable.”
Determined to prevent allergies in the next child, Claire, who is now the general director of the Association Québécoise des Allergies Alimentaires (Quebec Food Allergy Association), followed a strict diet during breastfeeding and avoided as many allergy triggers as she could. Félix-Antoine, the Dufresne’s 11-year-old second son, has environmental allergies, but can eat whatever he wants. Convinced that her breastfeeding regime was effective, Claire was later dismayed when her youngest child, Justine, would test positive for peanuts in 2001 at age 5. “I asked her, ‘how do you feel?’” says Claire. “And she replied, ‘I’m so happy! I wanted an EpiPen like my brother.’ I was crying and she was happy.”
Faced with two food allergic children and one non-allergic, Claire has set some ground rules at home. Teasing and taunting are not tolerated. And though Félix-Antoine, Claire and Pierre sometimes enjoy peanut butter at breakfast, everyone knows to wash their hands thoroughly, brush their teeth and not to give kisses for long periods of time. Claire and Pierre believe that Olivier, who’s now 13, and Justine, now 9, need to face their triggers. “I personally feel it is very important that the children learn to deal with having peanut butter around. My son is at the age that he goes out with friends, he goes to restaurants; he needs to know how to deal with it. That’s why I felt it was so important to travel with the kids, and to teach them to cope when they’re outside the house.”
The Dufresnes travel often, and not just on car trips with a cooler full of safe food, though they’ve done those as well. Three years ago, the family rented a cottage near Tuscany. To manage safely, they bought fresh local produce and cooked most of their own food. But the Dufresnes don’t shy away from eating in restaurants, at home or abroad. Olivier and Justine wear their MedicAlert bracelets and carry their EpiPens, and the whole family is very careful around food. “Every time we go to a restaurant we ask questions, we ask everything,” laughs Claire. “But we’re very selective.”
On home turf, Claire has ensured that when Olivier (who has outgrown the egg and milk allergies) goes out, his friends are just as prepared as he is for an emergency. Not only does she explain his allergies, she trains them on an EpiPen Trainer, and Olivier wears his auto-injector in an E-Belt at all times. Justine, who plays soccer and takes violin lessons, spends a lot of time at friends’ homes, often taking part in sleepovers. “She feels comfortable everywhere,” says Claire, who notes that Justine is seldom without her once longed-for EpiPen. “She’s not as responsible as her brother, but she is responsible.”
They’ve learned well from their parents, who have had to come to terms with their own anxieties. It’s important for parents not to let fear win the battle, says Claire. It’s easy to let feelings take over when speaking with teachers, camp counselors and restaurant staff. “Parents who go to the schools and not only ask, but demand things, they get rejected. This closes doors.” Much more effective, she says, is offering to come in and help out, and to teach the staff how to prevent exposure to allergens and to handle an emergency. That kind of knowledge makes life easier on everyone involved.
KERRY Ferguson, an educational assistant with the Calgary Board of Education, and husband Bill, a software engineer, are shining examples of helping to make allergies more manageable for everyone. Their 16-year-old son Matthew has a laundry list of allergies to contend with: at risk of anaphylaxis to peanut and tree nuts; Oral Allergy Syndrome to many vegetables; a possible soy allergy and gastrointestinal reactions to most legumes. Emma, their 13-year-old, has severe peanut, tree nut and dairy allergies, and has outgrown allergies to wheat, rye and oats.
Amazingly, neither teen has ever had an anaphylactic reaction. Kerry chalks it up to “being super, super cautious and total avoidance of the food (triggers).” It also helps that the Fergusons have been highly involved in their kids activities from day one. Bill was a Cub leader for Matthew, bringing his son’s food along on outings and overnight camping trips.
Matthew and Emma have long been active in sports, camps and bands, and continuously meet new people. To spread the word about their allergies, no matter how many newcomers have come into the family’s circle, Kerry and Bill devised a system. They have a form note to give to other parents which gives their names and contact information and explains each child’s severe allergies (with “severe” in large capitals). But in addition, the Fergusons accompany each note with a neon-coloured fridge magnet bearing their contact information. Neighbours say they have a rainbow of magnets from years past, when the Fergusons also used to distribute them to classmates to take home.
While Matthew has always taken his allergies in stride, Emma has been shy about hers. “She was born like that,” Kerry says with a laugh. “But of course, dairy is such a biggie.” To help Emma feel less “different”, Kerry baked. A lot. “They both went to birthday parties, and Matthew I sent with his own cupcakes.” Emma never wanted to take a cupcake because it would stand out. “So I’d make a whole cake and cut her a piece.” Kerry always checked to see what kind of cake would be served, then made a safe facsimile.
The Fergusons also strive to get their kids to speak up for themselves. While in St. John’s, Newfoundland, on a trip with the school band, Matthew had his teacher e-mail restaurants in advance to ensure they were prepared to accommodate his allergies. He also checked upon arrival at each restaurant to make sure the food was indeed safe. In one instance, the chef discovered a potentially deadly peanut product in a menu item. Matthew’s careful attention caught a danger not only to his own life, but also to that of another peanut allergic teen.
Kerry is now conditioning Emma about the need to be vigilant at house parties she will attend as she gets older. “It’s nice to be able to sit around and eat the food that your friends are eating, but mostly what you want is to sit around with your friends. The food is secondary.” By now, the kids are used to the fact that, at every pizza party, birthday, pot luck and camp, Kerry shows up with food that they can eat, or they bring their own. “In the big picture, we have done a lot of prep stuff so that the kids can walk out the door and just be kids.”
That preparation will become even more crucial in the next few years, as Matthew moves on to university. “Matthew’s thinking ahead,” says Kerry proudly. “There may be things that will have to be tailored around the food allergy that other families wouldn’t have to worry about,” but that is just the reality of living with such a condition.
While the specifics of how they deal with allergies are also tailored to their individual views and circumstances, the Fergusons, the Browns and the Dufresnes all share some common and successful strategies: educate everyone in the children’s lives; keep anxiety to a minimum; teach the kids to fend for themselves (because they will have to do so eventually); and perhaps most importantly, don’t let their allergies hold them back. “Food allergies should never, never stop you or your kids from doing anything you want to do,” says Claire. “There is always a way cope with it, there is always a solution.”
First published in Allergic Living magazine.
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