Articles


Allergy Activist


Nothing says "back to school" like a good old peanut butter and jelly sandwich. It's one of those American lunch-box classics that are so childhood, so seemingly innocuous, and. . . so potentially lethal. Three million American children are allergic to peanuts, and a bite of a PB&J can send some of them into life-threatening anaphylactic shock.

Allergic reactions to nuts appear to be more common than ever, and parents nationwide are working to educate their communities about the dangers. Rose Boynton, a Jamesville mother of three, found herself joining those ranks nearly four years ago, when her son Matthew was diagnosed with a variety of food allergies. Boynton amassed all the information she could about food allergies and visited support groups in Rochester and Buffalo. Then, with the encouragement of her son's doctor, she started FACES (Food Allergies: Coping, Educating and Supporting), which offers support and education to local families, and supports legislative action related to food allergies.

Like many local 5-year-olds, Matthew Boynton will start kindergarten this fall. His mother and other parents of allergic children will be encouraging administrators, teachers and parents to be vigilant about the lunches and treats sent into local schools. Boynton now shares her story with Family Times.

Q: Describe your personal motivation for activism in regard to food allergies.


A:
FACES started in response to my struggles trying to keep my son safe in a multitude of settings: home, play dates, restaurants and school. I traveled to the Rochester support group FACTS (Food Allergies: Coping, Teaching, Supporting) and the Buffalo group (WNY Food Allergy Connection), FAAN (Food Allergy & Anaphylaxis Network) conferences, and spoke with my son's allergist about being the medical adviser.


Q:
How did you learn that your child had a food allergy?


A:
We learned that Matthew had numerous food allergies after very regular doctor's visits between the ages of 15 months and 18 months. He was vomiting three to four times a day during those three months and in his wellness visits, he went from the 90 percent to the 45 percent (percentile for weight). My niece was diagnosed with a food allergy, so I asked that Matthew have the blood test, a CAP RAST (radioallergosorbent test). Sure enough, he was allergic to everything we were feeding him: wheat, soy, corn, oats, and peanuts and tree nuts.


Q:
How did Matthew's diagnosis change family life, such as shopping?


A:
It dramatically changed how we look at food and celebrations. We immediately changed his diet to exclude all of his allergies and he stopped vomiting immediately. After eight weeks of an all-exclusive diet, we reintroduced the least allergic foods from the testing--first corn, then soy, oats, and finally wheat. This took quite a few months and we were very happy that he outgrew most of his allergies by the time he was 3.

He tested very high to peanut and tree nuts, and continues to. Our physician has advised us that he will probably never outgrow them and they will be life-threatening and lifelong.

Shopping started off being three hours long, by myself, taking the time to read every label. When the new labeling act was passed (the Food Allergen Labeling and Consumer Protection Act of 2004), it made it a lot easier to look at the labels to determine if an item was safe for him.


Q:
What was the primary goal in starting FACES?


A:
To meet other parents and share ideas on how we kept our children safe. There are very different issues from pre-kindergarten until third or fourth grade, then in middle school, and as a teen. Because of my son's age, I have concentrated on the young years and managing play dates and pre-k and elementary school.


Q
: What does your role entail?


A:
Sharing information and letting people know they are not alone with their worries, which are valid, and helping them balance safety with practical daily life activities.


Q:
How difficult is it for children with food allergies to manage their own situations, especially regarding play dates and school?


A:
It is very difficult for children at the younger ages; it is the parents' responsibility and then, when the child is ready to learn to self-administer their epi (an injectable dose of epinephrine to treat initial symptoms of anaphylactic shock), teaching how to read labels and the shifting of responsibility. There is a lot of planning ahead and traveling with your own safe food.

Currently, there are no federal and state guidelines on how to manage a child with food allergies in a school setting. Children fall under (Section 504 of the federal Rehabilitation Act), which considers children with food allergies to have a disability, and the public schools therefore have a responsibility to make reasonable accommodations to ensure the child can fully participate in all activities.

The Legislature just passed the Allergy and Anaphylaxis Management Act (and the governor has signed it), which requires the (Department of Health) and (Department of Education) to provide guidelines and requires education about allergies and anaphylaxis for all staff.


Q:
How receptive are school administrators to helping parents and students with food allergies?


A:
School administrators, in general, have been very receptive, but currently the burden lies on the parents to create a health plan and work with the school staff to keep a child safe. A parent needs to be educated and extremely vigilant, as well as available for most field trips. When the new law goes into effect, the burden will be shared.


Q:
How fine is the line between managing a child's chronic condition and helping them understand that they are not being singled out because of that condition?


A:
Managing a chronic condition vs. encouraging inclusive and not exclusive play and lunch is very difficult. It is a constant balancing act. Luckily, most parents have been supportive and my friends and neighbors have been wonderful letting me educate them and read labels in their kitchen. At school, for the younger kids, most places have a nut-free table at lunch and the cafeteria staff and teachers help to review the lunches of kids who sit with your allergic child. I am not crazy about this, but it is surprising how quickly the young kids respond positively and want to help. Regarding arts and crafts activities, the teacher, hopefully after discussing things with the parents and the nurse, excludes activities with the allergen in them.


Q:
How helpful is it for parents to have a network of other parents for support?


A:
It is extremely important for parents to have a support group. The information shared about traveling, restaurants and schools is priceless. It also helps to validate each others' concerns. Many stories, mine included, involve relatives and friends who think the allergy is simply going to make someone a little sick, maybe vomit, and the parents' fears are overstated. This simply is not true and I think it gives peace of mind to know other people are encountering the same frustrations and how they respond.


Q:
In your opinion, are food allergies really more common now than in generations past, or are parents and doctors just better at recognizing them these days?


A:
At the last FAAN conference I attended in Baltimore, Md., they reported that food allergies are on the rise, possibly because of the hygiene theory, which says that our immune systems have been negatively affected by cleanliness. Years ago, when more people lived on farms, their immune systems were stronger due to the exposure to dirt, bacteria, germs.


Q:
What should a parent with a child who has a food allergy know about starting school? What questions should they ask? What requests are they able to make?


A:
A parent dealing with the schools needs to be prepared and available to spend some time educating the staff and working with the administration to have a plan to keep the child safe. Hopefully the new law will help in the future.


Q:
My son's classroom last year was a designated "no-peanut zone," yet parents continually sent in snacks for parties that had peanut butter. How could schools and teachers help address this without becoming "the snack police"?


A:
This is very difficult. My response to this has been education about food allergies to the other parents in the classroom with a small lesson on label reading, either through a letter or meeting. Teachers are the last defense and they should be reading all labels for food-allergic children.

The child's parents should also keep a bin of safe snacks in the classroom for those times when labels are unavailable or an unsafe snack is brought in. There should also be a very conscious effort to wash hands before and after eating to help prevent those unfortunate cross-contamination issues.

For young children, a peanut-free zone is helpful because at that age, my allergic son may ask a classmate if the cookie has nuts, the child innocently says "no," Matthew eats it, and it was processed in a plant with nuts and he could have a life-threatening reaction. A very minute amount of allergen can trigger anaphylaxis so it is very important to understand what is going into their mouths and how to treat it if it should arise.


Q:
What has been the most rewarding aspect of starting FACES?


A:
Turning parents' frowns and fears into smiles and happy faces again, empowering them to continue their vigilance and knowing another child was kept safe.





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