Two months later, the family tried again, taking a trip to a resort in northern Ontario. Despite receiving assurances the chef could accommodate Mark’s allergies, he reacted to the first meal he touched. “Within five minutes, he was vomiting and covered again in hives,” Mototsune recalls.
But the family that likes to travel couldn’t stay home forever. Julie, her husband Richard, 8-year-old Alannah, and Mark, now 5, take weekend car trips within a couple hours of home, and bring along safe foods in a cooler. “We eat picnic style in our hotel room, and the kids love it,” Julie says. “They think it’s so fun to be away from home.”
The Wilsons also needed a new approach following a “nightmare” road trip to Edmonton, in which Paige itched and swelled at every restaurant stop. Their travel solution is a 28-foot trailer, complete with kitchen. It has given them the freedom to visit relatives and go touring.
Eating out in a family’s hometown carries equal risk. A month after Eck discovered son Maxime’s allergies, her second son Xavier was born. He, too, developed life-threatening food allergies, but not to all of the same foods as his brother. For the boys, eating out is a rare event. Maxime, now 8 years old, is usually safe with pizza, but Eck is intent on keeping dairy-allergic Xavier away from cheese. A night at a chicken joint for Xavier, 6, is possible, but it wouldn’t be right for poultry-sensitive Maxime.
As a treat, Eck approached a restaurant she knew to be allergy-friendly to ask if they could accommodate a fancy meal for the family. She gave each boy’s list to the restaurant and chose dishes for them, and the staff took extra precautions, such as sterilizing and wrapping up cutlery for each boy. It cost nearly $400 for three adults and the boys, but it was a wonderful evening. But when Eck e-mailed to thank the restaurant, she got a devastating reply.
“We now appreciate how much work you go through to keep your children safe, and we really don’t feel that we can do it again,” she read. “It was very difficult. I was quite down for a while.”
Down, partly because Eck and Beaucaire rarely get a break. Mealtime is an elaborate production. The pair usually cooks two or three different dishes for one safe meal, plus lunches for the next day. Fortunately, Beaucaire loves to cook. “I used to be a bad and very unwilling cook,” Eck says. “Claude finally sat me down and said, ‘Listen, you’ve got to stop being like this.’ I needed that.”
Today, Karen is immersed in helping others to cope with allergies as the volunteer leader of the Ottawa Anaphylaxis Support Group (www.ottawaasg.com). But she found it important to accept the amount of work it took to keep her own sons safe because “to do it unwillingly, it just takes a lot of energy out of you.”
For an adult with multiple food allergies, dining out also presents a challenge. Consultant Marilyn Friedmann, 44, often meets clients in restaurants and has seen servers “fly into a panic” when she asks for a meal without fish, shellfish, nuts, peanuts or mushrooms.
It can be an embarrassing experience. “You sit down, you order and you explain your allergies, and then they say to you, ‘maybe you should eat somewhere else.’”
While working for a food manufacturer a few years ago, Friedmann was at a conference when a chef piped up about her allergies in front of about 30 people, including the company president.
“Don’t you realize that allergies are God’s way of getting rid of the weak people?” Friedmann recalls him saying. “I said, ‘Well, he’s allowed me to live this long. I think he’s got a purpose for my life.’ I was absolutely appalled.”
There are bound to be frustrating times in a life with multiple food allergies. Julie Mototsune misses the exotic recipes she used to cook. Karen Eck would like to take a vacation with her husband, without overwhelming a caregiver. Extra vigilance is required at school, at work, and during sporting events and social gatherings, for multi-allergic children and adults alike.
Friedmann had concerns about having children because of the challenges she had faced, such as severe asthma attacks and eczema so bad, she says she looked like “a monster.” Friedmann now has two sons, age 12 and 14, and neither inherited her allergic tendencies.
But she firmly believes that there’s a palpable upside to a multi-allergic life. “It makes you more aware of other people with vulnerabilities,” she says. “I think it makes you a more sensitive person.”
Karen Eck says her sons’ allergies have made her family more involved with their school and community than they otherwise might have been. “We get meetings with the teachers, and sometimes we sit and talk to them for half an hour a day. Other parents don’t get that.”
Eck also likes to revel in the moments when she meets someone who understands how serious her sons’ food allergies can be. “People,” she notes, “will amaze you sometimes.”
First published in Allergic Living magazine in Summer 2007.
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