How to deal with life-threatening allergies

Families with kids with dangerous allergies cope with fear every day. Here are some lessons for the rest of us.

By Lesley Young

How to deal with life-threatening allergies
Photo courtesy of Thinkstock
Imagine living in a world where deadly proteins are lurking in every kitchen, every school, even on every plane – anywhere there is food. That's the reality for the parents of the five to six percent of kids who are allergic to foods like nuts, sesame, soy, shellfish, wheat, eggs and dairy.

Now consider that most of us typically don't give much thought to this danger. The truth, says Charlotte Miller, an allergist with the Toronto Allergy Group, is that families that don't regularly deal with food allergies underestimate the severity of the condition. "Canadians have become more understanding of nut allergies," she says. "But kids with multiple food allergies? There's not quite as much awareness."

Researchers continue to make discoveries about anaphylaxis (a severe, life-threatening allergic reaction) and make advances in diagnosis and treatment. Meanwhile, these families cope with awkward, frustrating and sometimes dangerous allergic situations every day. Here, they're sharing their stories and providing some lessons for all of us.

Scenario 1: A baby reacts to a new food

Marni Halter thought she knew enough about food allergies. Then she fed her one-year-old son, Marcus, the icing from his birthday cupcake. "I thought it would be cute in the photos," the Toronto mom says. Within minutes, Marcus broke out in hives.

Surprised that Marcus was reacting to the icing, Marni and her husband, Aaron, sped to the hospital. "He was crying and screaming. By the time we got there, his eye had swollen shut and his face was so puffed out, he was unrecognizable." When the immune system's white cells detect an antigen (in this case, a protein in the egg whites in the icing), they produce immunoglobulin E, which, in addition to attacking the allergen, affects nearby tissues and organs. The resulting symptoms can include hives, itching, flushed skin, stomach pain, vomiting, diarrhea, a hoarse voice, swelling (of the lips, tongue or throat), coughing, wheezing, sneezing, shortness of breath, irritability, confusion, sweating, dizziness, fainting and loss of consciousness. Marni dashed into emergency and saw a long line at the check-in.

"I had one of those polite Canadian moments: Do I wait, or do I rush to the front? And I actually hesitated!" Thankfully a nurse was walking by and asked her if Marcus was having an allergic reaction. The second Marni said yes, the nurse screamed, "Child having an anaphylactic reaction!"

Lesson: Food allergies are serious
"By the time Aaron had parked the car, Marcus had been treated with an EpiPen, was connected to an IV for medication, and was being monitored by two doctors," Marni says. In a severe anaphylactic response, more than one bodily system is affected, blood pressure drops, airways may swell shut, and unconsciousness and death may result.

Tips
Carry an EpiPen: Speeding to the ER was the right move, but Marni and Aaron now also know the most important lesson of all: Always have an auto-injector on hand. It delivers a dose of epinephrine (or adrenaline) that, in most cases, reverses the symptoms of an allergic reaction.
Get tested: Marcus recovered overnight. His parents, however, were forever changed. They had Marcus, who is now five years old, tested, and they eventually learned he was allergic to peanuts, tree nuts, fish and shellfish, as well as eggs.
Get support: Parents of newly diagnosed children are often overwhelmed and scared to feed their kids anything, says Laura Bantock, director of Western Region of Anaphylaxis Canada in British Columbia. That's why her group recently developed Living Confidently With Food Allergy: A Guide for Parents and Families (available at allergysupportcentre.ca). "I learned some of the best, most helpful information from other parents," adds Marni, who highly recommends attending local parent groups for regular confidence boosts and practical information.

Scenario 2: An adult forgets a visiting child's allergy when handing out treats
When Luanne Lank's daughter Hannah was four, their neighbour in Winnipeg forgot that Hannah had a peanut allergy and gave the child, on a playdate at his home, a cookie with nuts in it.

Fortunately, the neighbour realized what he had done and took Hannah home immediately. Luanne gave her daughter an antihistamine to treat her mild symptoms, which included watering eyes. "We did have an EpiPen too, but that time I drove her to the hospital to be safe," says Luanne. "Our neighbour felt horrible. I didn't want to get him more upset, but at the same time, I was like, Why would you do that?"

Lesson: Be an educator
Adults who don't regularly encounter children with food allergies may simply forget, says Bantock. They may also under­estimate the risk, which can come not only from eating but also from touching and, in rare cases, inhaling small compounds.

Tips
Educate your kids: As soon as Hannah could understand, Luanne taught her to wash her hands before eating or touching her face, and to only eat foods made for her or approved by Mom or Dad. Later, she also taught her not to share food, dishes or cutlery, and to wash right away when an allergen gets on her skin. Eventually she taught Hannah to read food labels and to ask how food is prepared.
Educate caregivers: Parents should explain, in a straight­forward way, what kind of symptoms will result and show caregivers the auto-injector and how to use it. "Once they see that, the lightbulb tends to go off [and they realize], Oh, this is serious," says Marni. And if you sense that an adult is just not taking your child's allergy seriously, you can go with your child to the get-together to supervise or just not let them go at all.

Scenario 3: Missing out on experiences others are enjoying
Before taking her kids to her niece's birthday party in Edmonton, Mindy Grey* called her sister to check that they could eat the planned food. However, her sister forgot about the piñata candy. Mindy's kids, who are allergic to everything from nuts to shellfish to soy, had to stand aside and watch the other guests gobble up the goodies.

"I was pretty upset," says Mindy. "I've taught my kids not to eat food that is unsafe for them, so I don't necessarily worry they will be in a dangerous situation. The point, for me, is to make sure they don't feel left out or, worse, ostracized. It's hard enough to manage situations out in the world. I mean, I can never take my kids for ice cream after a soccer game. That pains me. I just think the last place they should feel different is with family."

Lesson: Family may not understand
Miller sympathizes, pointing out that, in some cases, family members are the hardest to convince of the seriousness of food allergies. Carla Da Silva, a Montreal mom whose five-year-old son, Christian Di Criscio, is allergic to wheat, dairy, eggs, shellfish, tree nuts, peanuts and flaxseed, says some of her family members still "smuggle in" milk for their tea or coffee after years of being asked not to.

Tips
Provide food: It is not the responsibility of others, even family, to provide safe environments for allergic kids, says Bantock. Call the host to ask about the food, and inform them that you will send along a safe meal.
Teach kids to plan: Include your child in your meal preparation so they understand the rules they must follow and the reasons (this also boosts their confidence), adds Bantock. Keep them focused on what they can do (don't eat candy from the loot bags but do have fun with your friends!).
Set boundaries: Ultimately, Carla says it is important to trust only those family members who clearly recognize the risk. And what about those times when speaking clearly, calmly and with great patience does not work? "In the beginning," says Carla, "I let it go. But now I just won't invite them over."

Scenario 4: Air travel with an allergic child
Leslie Milne and her son Luke (age five at the time), who is allergic to peanuts, had their flight to Florida planned; they even arrived early to wipe down their seating area. But thanks to a new airline food-allergy policy (not widely communicated), they were turned away at the gate for failing to provide six pages of paperwork filled out by their doctor.

While the busy Winnipeg mom and her son, now seven, managed to get a different flight out the next day, Leslie had to scramble, while on vacation, to get the paperwork and signature for the flight home.

Sadly, the peanut-free "buffer zone" in the seats directly in front of and behind Luke, which was announced to the other passengers, was not properly enforced either. On the flight home, not five minutes after takeoff, "The passenger in the seat in front of us opens a bag of nuts!" says Leslie.

Lesson: Travel is a threat
For the most part, families with food allergies have no control over their travel environment.

Tips
Research company policies: Planning is imperative. Parents need to consult airlines, trains and hotels every time they travel, because policies change, says Bantock.
Interview restaurants: Call a few days before you plan to visit and talk to the chef directly to state which foods your child is allergic to (make sure it's clear that this is an allergy, not a preference). If you don't get a clear sense that they will prepare food for your child using clean equipment and utensils to avoid cross-contamination, don't go.
Bring your own food: Try to book accommodations with a kitchenette, and research foreign food labels in advance. Local food-allergy associations are a good place to start.

Scenario 5: Your teen's first overnight trip from home

Hannah, now 16, went on a school trip to a remote area of the Rocky Mountains. She was far from her parents – and from a hospital. This kind of occasion is a milestone for families with children who have food allergies, says Miller. Controlling the environment is parents' number one safety measure, and yet eventually they must trust their kids, who do grow up, to go off and face threats on their own.

Lesson: Empower your kids
Luanne and Hannah both think that boosting Hannah's own sense of control was a key step in her transition to self-responsibility. Hannah recently calmly confronted a teacher who ate peanuts in one of her classes: "I just said, ‘I have a serious peanut allergy. Would you mind not eating those when I am in the room?' And he was very understanding."

Tips
Practise good decision-making: Parents can boost children's confidence by problem-solving possible scenarios with them, says Bantock.
Get peer support: A good way to remind teens of the dangers they face and give them confidence is to join a local food-allergy support group, says Hannah. She admits that other teens living with food allergies may take risks because, as she explains, they are at the age when they feel invincible. They may also not have had an allergic reaction in a long time, which might increase their willingness to take chances.
Keep in touch: Bantock says some anxiety for parents and kids is normal and actually beneficial, because it helps them keep focused, be vigilant and remember to avoid risk, especially when starting a new activity. Luanne let Hannah go on the trip – after arranging for her to have a GPS tracking device with her at all times. "You can't always be so paranoid that no one enjoys anything," Luanne says. "But you still have to be in control."

We have lots more information about food intolerances, including 10 things you probably didn't know
                                               
This story was originally titled "Where is the Danger Zone" in the October 2013 issue.
           
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