When her son Evan was very young, Nicky Forsyth would carefully watch him during every meal, always worried he would have an allergic reaction to something she served, even as she was ultra-cautious to keep everything free of milk, egg and peanut products.
“I was very anxious about food and always scared to let him try anything new,” said Forsyth, whose son experienced his first allergic reaction at the age of 3 months.
As operations manager for the Food Allergy Support Group of Minnesota, Forsyth facilitates the nonprofit group’s bimonthly parent support group. A frequent hot topic among parents: dealing with extended family members who don’t understand the severity of food allergies.
While Forsyth, of Hanover, said that on a day-to-day basis she feels as if her family, which includes two other children, has the food situation under control, there are new challenges to face now that 9-year-old Evan’s social life is expanding.
“He went to a sleepover not long ago, and it was a big deal for me,” Forsyth said. “I don’t want him to be excluded and I like for him to have the same kind of food as everyone else, so I sent along what he could eat.”
Parents look for support
Rebecca Ayaz, executive director of the Food Allergy Support Group, said the most common time for parents to contact the organization is after their child is first diagnosed, which typically happens before age 3. Eight foods are the most common cause of more than 90 percent of food allergy reactions in the United States: cow’s milk, eggs, wheat, soy, fish, shellfish, tree nuts and peanuts.
“People come to us in crisis mode. They need help, access to resources, and are looking to talk to other parents,” Ayaz said.
The group, which began in 2003, offers a Buddy Program that pairs experienced parents and those with newly diagnosed kids. It schedules webinars on a variety of allergy-related topics and operates a support program for kids in grades one through five where they can connect with other kids with food allergies.
Katy McFall of Edina has learned more than she ever thought she would about food allergies since her only child, Jack, now 14, was diagnosed with a peanut allergy at the age of 18 months.
“Jack learned to read when he was a preschooler, and one of the first words we taught him was ‘peanut’ so he could recognize it on labels,”McFall said.
When Jack started school in Virginia (the family relocated to Minnesota in 2012), his mother worked with school officials to create a 504 Plan, an outgrowth of the Rehabilitation Act of 1973, which allows all students the chance to have a “free appropriate public education” regardless of any disability.
“Basically, it’s an accommodation plan laid out for Jack, his teachers and for us, providing guidelines on how to work with his allergy,” she said, adding that he was the first child in his school district to have this plan.
McFall took this step because she did not want Jack excluded from any school activity, whether it was making birdseed art projects or enjoying birthday cupcakes for a classmate. The 504 Plan stipulated that McFall would be notified in advance about anything that would require special accommodations for Jack — for instance, she sent cupcakes to school for him that were kept in a freezer to be used as needed.
As Jack got older, he became more skilled in managing his allergies and realizes he has to make the right choices.
Taking control of allergies
The same is true for Harris Dirnberger, a 17-year-old senior at Hopkins High School, who will be going away to college in the fall. His mother, Tiphanie, said she now feels confident about her son’s ability to manage his peanut, soy and other allergies.
She said the family, including Harris’ three younger siblings, has always taken “a village approach” to helping him manage his allergies.
“We made sure everyone we knew was informed on what works for him, but we never separated him in the cafeteria,” Dirnberger said, noting that Harris was the first child in his elementary school with a food allergy. “Our Number 1 job has always been to keep him safe, but in the real world, he wouldn’t be sitting at a lunch table by himself.”
Over the years Harris has taken more personal responsibility for his food allergies. He always carries an epinephrine (or EpiPen) with him. The boy who once resisted summer camp because of his allergies (his mom spent the week as a camp volunteer to help in the kitchen and read labels) now travels frequently with a Nordic ski club and doesn’t hesitate to head into a restaurant kitchen to quiz the chef about the ingredients in a menu item.
“I’m sure Harris wishes he could spend a day not worrying about what he has to eat, but he’s not the kind of kid who is going to dwell on missing out on things,” Dirnberger said. “However, it’s a life-and-death situation — kids with food allergies have to grow up faster than other kids. It’s their reality.”
Julie Pfitzinger is a West St. Paul freelance writer.
The Food Allergy Support Group of Minnesota offers an e-newsletter, online discussion boards, special family events and an annual Food Allergy Resource Fair. For more information, visit www.foodallergysupport mn.org.