Seattle's Child: Full Plate: Living with Food Allergies

April 2008

Full Plate: Living with Food Allergies

Editor’s Note: To learn about food allergies and their symptoms, why the incidence is rising, how to ward off food allergies, and how to receive a diagnosis, read “Food Allergies: When Food Becomes an Enemy.”

The bad news about food allergies is that strict avoidance of the allergy-causing food is the only way to avoid a reaction. There are no medications to cure food allergies, although epinephrine (adrenaline) is prescribed to reverse anaphylaxis, the most severe reaction. Children may also be given antihistamines, such as Benadryl®, to control itching, hives or runny nose, or a bronchodilator, such as albuterol, to control asthmatic reactions to food.

We asked Anne Munoz-Furlong, founder and CEO of the Food Allergy & Anaphylaxis Network (FAAN), to share tips for living with a child’s food allergies. Munoz-Furlong was motivated to start the network in 1991 after her infant daughter was diagnosed with milk and egg allergies.

SC: What are the most important things parents of newly diagnosed children with food allergies should know? Many of them say they are overwhelmed at first.

AM-F: If a parent of a child who is newly diagnosed with food allergies is feeling overwhelmed, that is completely normal. It sounds so easy to say, “Avoid milk,” but the reality is that it takes planning and some creativity. The good news is, in time, living with a restricted diet becomes second nature. Some families say they consider food allergy part of the family. They think about it before making all decisions including eating in restaurants, during food shopping, before planning vacations, etc. Like anything else, education is the key. Once you learn what others have done and begin to incorporate food allergy into your family and your lifestyle, it does get easier.

SC: Once food allergies are diagnosed, should the patient always be in the care of an allergist (specialist)?

AM-F: An allergist is a pediatrician or internist with additional training specializing in allergy. Some families get a diagnosis from an allergist and then go back to their primary care physician for ongoing care. If a child is very allergic, an allergist may be the best option for managing the child’s allergies.

SC: Do you have any advice on avoiding hidden allergens in products – tips on being a good label-reader?

AM-F: The best tip for being a good label reader is to never take short cuts. Ingredients can change without warning. So, read the label for all foods before you buy them. Some families read the label three times – once at the grocery store, once before storing the food at home, and once before cooking the food. They tell us that they often see an allergen they missed the first two times they read the ingredient label. Don’t forget to read ingredient statements for bath and beauty products, too; many of these include foods such as almonds, milk, wheat or eggs.

SC: Should families forego going to restaurants, birthday parties, etc? Should the child always bring her own food?

AM-F: There is no reason families should let their food allergies stop them from going to restaurants, visiting friends or attending birthday parties. The key here is to plan ahead. Call the restaurant and ask about ingredients or visit their Web site to be sure there is something your child can eat. When visiting other people’s homes, tell them in advance about the food allergy. Offer to bring food with you so you know your child will not go hungry and you don’t have to worry about a reaction. As children get older, some opt to leave before food is served during a party; others eat before leaving home and simply enjoy the games and activities without worrying about the safety of the food being served. Involve the child in making these decisions and always carry a snack with you in case you are delayed or having so much fun you don’t want to leave the party.

SC: Are there tips for working with your children so that they don't feel deprived and resentful about not being able to eat certain things?

AM-F: Involve children in decisions about parties to attend, how to handle food, and who should know about their food allergy. Empowering children in this way makes them feel in control and allows them to build self confidence – two great traits that will serve them well as they approach their teen years and spend more time with friends, away from home.

Some families allow their child to select favorite treats that can be traded for candy or goodies they receive from friends. This type of system allows the child not to feel deprived when turning food down.

SC: What are the guidelines for carrying antihistamines and epinephrine?

AM-F: Your child’s doctor will be able to provide guidance on what medications to take and when to use them if a reaction occurs. It is best to have written instructions that can be shared with anyone caring for your child, so that there is no guesswork if a reaction occurs. The FAAN Web site (www.foodallergy.org) contains a sample Food Allergy Action Plan in the download section. Keep in mind that managing food allergies is a process, not an event. You will have to change your management plan as your child ages and is able to take on more responsibility.

SC: Do you have advice for dealing with family members or friends who may downplay the allergies and say parents are turning their kids into
“picky eaters”?

AM-F: It is not uncommon for families to encounter someone who “doesn’t get it.” Try not to engage emotionally. Rather, spend your time trying to show them educational resources that explain food allergies, so that they learn you aren’t making this up. Have them go to Web sites such as FAAN’s, tell them about meetings they can attend, or invite them to go to a doctor’s appointment with you so they can ask the doctor about their concerns.

Local Parents Share Insights

Although she was at first overwhelmed by her daughter Danyel’s extensive allergies, Chay Bigger of Bellevue approached the diagnosis with a positive attitude and optimism.

“It changed the way we ate as a family – for good,” Bigger says. They all stick to the diet Danyel, 8, needs, although Chay and her husband Shawn do not have food allergies and Josie, 5, has milder allergies.

“We can save money by not going out to eat,” Bigger says, adding that there are only two restaurants where they can go and feel safe. A nutritionist guided them into a food rotation plan, in which permitted foods are eaten on a four-day rotation. “It totally simplifies meal planning and shopping. I always know exactly what we’ll have. It’s been a blessing,” she says. For dessert, she serves sorbet, popsicles and whole fruit bars, often homemade.

Bigger role-plays with her girls, so that they understand what to do if they see food sitting out or are offered foods they can’t have at another house. A snack goes with them wherever they go, including birthday parties. “Other kids want what they have because it’s different,” she says.

On a more serious note, she says Danyel always carries her own epinephrine and “takes ownership” of that. Bigger emphasizes being prepared for a disaster by having what the kids need ahead of time, including their foods and medications. “Make sure your friends and family understand the seriousness of it,” she says. “I know I can trust some family members and not others.”

Jen Costigan of Seattle is just beginning to deal with her 3-year-old son Will’s allergies to gluten, dairy products, nuts and pineapple. The entire family has gone dairy- and gluten-free, and her son will be re-tested in six months to see how things are going.

“Things we really rely on as a family are fresh fruits and veggies, organic meats, rice milk, sweet potatoes, rotated grains and gluten-free products (sparingly),” Costigan says. I’m resisting the idea of trying to remain on the ‘American’ diet (cereals, sandwiches, pasta, cheesy foods, baked goods) by substituting with processed gluten-free or modified soy foods. Something about that just doesn’t seem like a healthy option. I’d rather that my son just learn to eat whole foods and rotated grains, etc., than to try to fit himself into the unhealthy American diet mold.”

Costigan has already begun to empower her young son. “Will is learning to ask if things are ‘gluten free’ and proudly announced to his teacher the day after his testing that he could not eat any ‘glue’.”

Heather McCrone, the Bellevue mother of Aubrietta, 8, and Kelsey, 6, discovered Aubrietta’s allergy to tree nuts when her daughter was 2. Her allergy is so severe that 1/8 of a pecan could send her into anaphylaxis and kill her without immediate medical intervention. Because of that, McCrone carries an Epi-Pen®??? (a self-injectable device containing epinephrine) with her at all times and is very attuned to Aubrietta’s first signs of exposure.

“Aubrietta wears a medic alert bracelet and has been taught to go to an adult and point urgently to her bracelet if swelling in her mouth makes her unable to talk,” McCrone says. “I accompany her on all field trips and to class parties in school when parent volunteers bring in food. When she goes on play dates or to birthday parties when I cannot be present, she is only allowed to eat fruit and cheese or treats I send along with her.”

As Munoz-Furlong says, many families consider food allergies when making any decisions. “The biggest impact has been when we travel,” McCrone says. “On our week-long ski and camping trips, where we will be more than half an hour from a hospital and out of cell phone range, I pack from home all the food that she will eat for the week. We save a lot of money by not eating in restaurants when we travel! Before we leave on a trip, I go online and map out where all the hospitals are, just in case. I also make sure that 911 service is available in the more rural areas we might pass through.”

McCrone finds the hardest part of her daughter’s allergy is in “dealing with well-meaning people who believe that allergies are just food preferences.

“Some have told me that I’m indulging my daughter in being a picky eater and if I snuck some nuts into her food, she’d learn to like them. A friend who practices alternative medicine keeps urging me to let her administer some Chinese herbs that would supposedly cure her. I’ve come to avoid these people – some of them close family members – because I fear that they will act on their suggestions to prove their point.”

Judgmental comments are the last things parents of allergic children need, Munoz-Furlong agrees. She and others recommend finding other parents who can be part of a support system.

“What I needed at first was encouragement,” Bigger says.

For more information and support, contact FAAN at 800-929-4040, www.foodallergy.org. The Seattle-based Food Education Allergy Support Team (FEAST) has just become the nonprofit Washington Food Allergy, Eczema, and Asthma Support Team (WA-FEAST), and can be contacted at 206-725-9311, www.washingtonfoodallergy.org. To reach the Pierce County Food Allergy Support Group, e-mail nancythomson253@yahoo.com. Members of MySpace can go to http://groups.myspace.com/wearenotnuts or http://groups.myspace.com/AnaphylaxisAware.

Wenda Reed is managing editor of Seattle’s Child.

Handling Food Allergies at School

The 2008 state legislature unanimously passed legislation requiring the superintendent of public instruction to develop anaphylactic policy guidelines for students who have severe allergic reactions to food, drugs, insect stings or inhalants. Previous legislation mandated the implementation of Food Allergy Guidelines for school districts by this fall.

Janet Cartwright, a physical education teacher and PTA safety chairperson at Loyal Heights Elementary School in Seattle, is way ahead of the game. Last spring she received an award from FAAN for her work on behalf of children with food allergies.

“When we were first introduced to kids with anaphylactic shock who could die, it was a big shock for us,” Cartwright says. This occurred when Meg and Jay Satz brought their kindergarten son, Rory, to Loyal Heights seven years ago. He has a severe allergy to tree nuts.

“The Satz family was not panicky; they were very matter-of-fact, and Rory had been trained not to take food from anyone,” Cartwright says. She and Rory’s parents and another family set out to make Loyal Heights a nut-free school, and over the years the school has accommodated other allergies as well. Although Rory has graduated from the K-5 school, there are now four kindergarteners and several students scattered through other grades with nut allergies, and two students with severe milk allergies – one of whom cannot even touch a dairy product.

No nuts are served in school lunches. Children with nut allergies sit at an “allergy table,” which can be shared by any students who buy the school lunch. “At the beginning of the year, I sit with the kids, and as the year goes on, lots of friends want to sit there,” Cartwright says. The “milk allergy table” is more restrictive because there is milk in the school lunches and so nonallergic children can’t sit at the table.

To prevent cross-contamination, Cartwright bought different colored rags for wiping down the allergy tables, and she takes them home and washes them herself.

The protocol includes other accommodations. Students who have allergic classmates must use hand wipes before they enter the classroom. (All of the kindergarten children with nut allergies are in one classroom to make management easier.) No food is eaten in common areas, such as the gym. Parents are given accepted lists of ingredients they can use in treats for birthdays or special occasions, and children with severe allergies have their own treat boxes. Cartwright has made up flyers with pictures of severely allergic students, their symptoms and steps to take for each child, and gives them to substitute teachers.

“We had to educate our community of teachers and families,” Cartwright says. “Some teachers and parents had fear – they asked, ‘Why don’t these kids go to a private school or home school?’ But I felt they have a right to a public education.” Over the years, she has been able to help create a kind, empathetic and caring environment for children with food allergies, FAAN said, in recognizing Cartwright’s contributions.

“Our school is a kind of safe haven,” Cartwright says. “We try to keep (the students with allergies) from feeling isolated.”

She advises parents looking for a school to ask if they have a plan for allergic students and what to do about anaphylaxis. “If they have no idea what you’re talking about, you may be concerned,” she says. “I wouldn’t necessarily give up on the school. Educate them a bit and see if there are things that can be done to make your kid safe.”

In working with administrators and teachers, parents have to walk a fine line between advocating for their child and being demanding or confrontational, Cartwright says. “I admire parents who balance how to keep their kids safe, but not fearful,” she adds. “I think the best approach is to ask the staff, ‘How can I help?’ and to give suggestions.”

FAAN’s Munoz-Furlong advocates beginning to educate the school staff early – in the spring or during the summer before the school year begins. “Include the teacher, nurse, cafeteria staff, principal and others who will be in contact with your child. Confidence is contagious – go in with an attitude that ‘we are all in this together,’ and you’ll be able to develop a plan to keep your child, their student, safe at school.”

FAAN has informational materials and videos to help parents and schools work on allergy safety at www.foodallergy.org/school.html. “Remember, there are 2.2 million school-age children with food allergies,” Munoz-Furlong says. “The children attend school and participate fully in class projects and other activities. You are not alone.”

– Wenda Reed

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