Just found this piece from Time (see below for full story), through this person’s Blog (sorry I don’t know your name)
I must say that I was nearly in tears when I was reading this. As a parent of an anaphylactic child to dairy, eggs, peanuts, it just brings it home what position we are in and I wonder what psychological toll this is having on Declan (not to mention his mother and my wife Melanie). I know what it’s done and how it continues to affect her.
Have a read and comment with your thoughts.
Aaron
–
Stuffing. Candied yams. Baked ham. And lots of cakes and cookies. For most of us, the holidays are largely about food, and that s what makes them so enjoyable. But for families with food-allergic children, the holidays are all about food—and that s what makes them so terrifying.
The American Academy of Allergy, Asthma & Immunology estimates that 6 to 8% of children suffer from severe food allergies, and though no one can agree on exactly why, the number of young sufferers has grown significantly over the past couple of decades. Nearly 90% are caused by milk, eggs, peanuts, wheat, soy, fish, shellfish or tree nuts. On January 1, a federal law took effect requiring food labels to state clearly whether a product contains any one of those main eight culprits. But significant difficulties—not necessarily medical—remain. A food allergy diagnosis has a tremendous impact on the psychological wellbeing of the entire family, says Anne Muñoz-Furlong, founder and CEO of the Food Allergy and Anaphylaxis Network (FAAN), a nonprofit patient advocacy group.
The holidays are especially difficult, says Remi Hahn, whose 4-year-old daughter Olivia is severely allergic to dairy, eggs, mustard and sesame. The most stressful thing is the lack of control, Hahn says. One undetected wrong morsel and her daughter could be on her way to the hospital.
Several hospitals around the country are in the process of developing psychiatric programs specifically for families with food allergies. According to Anaphylaxis: How Do You Live With It?, a 2005 article in Health and Social Work, coping with a child who has a severe allergy is similar to dealing with a chronic disease. In a study of 17 families with children with anaphylaxis, the authors describe the profound psychosocial impact on parents of knowing an illness can cause death. “I was completely shocked and surprisingly emotional,” says Stefanie Jones, who burst into tears when daughter Darby was diagnosed four months ago with egg, milk, wheat, and peanut allergies. “I realized I’m going to have that weird kid at the party with the dairy-free, prune juice cookies.”
Children, of course, bear the brunt. “The emotional toll is huge,” says Muñoz-Furlong. “It tends to wear them down, particularly after they have a reaction.” Some children lose the ability to trust people. They may want to stay home all the time within a controlled environment. If they have a reaction at home, they may become afraid that even their parents can’t control the allergy. Others are fearful of food or develop eating disorders. They might become hypochondriac, phobic, or suffer from panic attacks or post-traumatic stress disorder symptoms. Many see counselors who teach them relaxation tips and how to speak up about their allergies.
For Jill Mindlin, watching her 5-year-old daughter suffer—more times than any parent should—through an anaphylactic reaction to dairy, eggs, peanuts, tree nuts, or seeds is torture because she sees the effect it has on Maya. One of the symptoms of food allergy is dread, Mindlin explains. She knows something is very wrong and literally tries to jump out of skin. It’s unbearable to watch. As a result, Maya tends to shut down around food and new people. Some of Maya’s first words, her mother says, were “Read the ‘gredients.”
And that’s just what her daughter goes through. To cope with her own stress, Mindlin not only founded a local support group, she attends allergy conferences and lobbies local and state governments to protect food-allergic kids in school. One parent in Mindlin’s support group had to ask the principal to intervene when kids at her child’s elementary school were bullying her son, chasing him around the schoolyard with peanut butter.
Torn between reasonable fear and hypochondria, safety and overprotection, parents struggle to raise their children with some semblance of normalcy—without driving themselves, their kids, their friends, and their communities crazy. Waiters roll their eyes when parents ask to view labels and school staff often resist accommodations. Parents whose kids dive into birthday cake with abandon and live on PB and J aren’t necessarily sympathetic to what they call the peanut police. Even the most understanding moms aren’t accustomed to the precautions involved in having an allergic child over for a playdate.
Adjustments go beyond tailored birthday cake recipes. A 2001 FAAN study of 253 parents of children with food allergies found that childhood allergies have a significant impact on family activities and lifestyles. Heidi Pasternak, a part-time tutor in Lexington, Massachusetts, had to quit her full-time teaching job because she couldn’t find a milk-free daycare for her son Lucas (peanuts, tree nuts, milk, egg, sesame, shellfish, fish, barley). “The choices of things we’ve done as a family are severely limited,” Pasternak says. “We only went to food-free places when he was a toddler. No Chuck E. Cheese. When I see an ice cream truck I have to walk the other way because he’s contact-sensitive. I thought I was going to be the cool mom and travel to Europe with my baby and take him to Fenway Park. But even at minor league games, everyone’s throwing peanuts at each other.” One saving grace has been an annual trip to Nantucket that Pasternak takes with her friends from college. “They make the house totally safe for Lucas,” she says. “Nobody uses milk, eggs or nuts. I don’t have to be the food police. It’s one of the rare times I can feel totally relaxed while socializing. And that’s a huge deal.”
Remi Hahn goes out her way to make her daughter Olivia feel included during the holidays. She offers to cook cupcakes for the preschool class party, using egg and butter substitutes. At Christmas time, she hosts a party so that her daughter can participate in the baking of a gingerbread house without breaking into hives or having an anaphylactic reaction. And on Christmas Eve, when her family goes out to dinner, Hahn is sure to have the roast beef cut in front of her and to bring extra food in her purse just in case nothing on the menu works. “I try to be as unobtrusive as possible because I feel like Olivia’s allergies are our issue,” she says. “I try to go out of my way so that other people don’t have to go out of theirs, especially around the holidays when everyone else has their own traditions to follow.”
