[Cover Profile] Breaking Out of the Bubble

To accurately portray the world in which the food-allergic person lives, the author spent a day with the family of David and Kari Keaton in Rockville, Md., visiting with twins Jeremy and Joni at home and at school, restaurant dining and grocery shopping with Kari, and speaking with 16-year-old Daniel by phone. It is a world in which food safety is an every-minute focus for the entire family, and allergenic cross contamination and quick response is a matter of life and death. It is a world in which options become extremely, and too often, unnecessarily limited by what is perceived as too many manufacturers’ self-protective precautions.

Visualize a young child to whom you are very close – a son or daughter, niece or nephew, brother or sister, neighbor or friend. Now invite that child to a birth-day party, but tell her she can’t eat the cake or ice cream … or any of the party foods – just in case. Take him to a restaurant, but before he sits down, wipe down the table and chair and bring food from home for him to eat. Or, for a really special event, call ahead and speak directly with the chef about the child’s meal.

Grocery shop for the child, but don’t buy anything with milk, wheat, eggs, soy, peanuts, tree nuts, barley or sesame. Or peas, lentils, chick peas, bananas, kiwis or avocados. Be sure to read every label – even if you’ve bought it a thousand times before, it may have changed. You should also avoid anything that includes any version of “may contain” or “was processed in a facility that uses” any of those foods.

Do all this because you know that that child could die from even trace consumption.

Then trust the restaurant or the manufacturer. It is a difficult line for parents to tread. Attempting to protect the child while allowing him to feel normal; avoid-ing an over-protective bubble while keeping her safe; teaching independence while always staying on guard for the slightest sign of allergic reaction.

 The actions and foods listed previously may seem extreme, but they are reality for 11-year-old Jeremy Keaton, who has severe allergies to all of the above, react-ing even to the foods’ touch on his skin.

Beyond avoiding the foods to which one is allergic, “There is only one thing you can’t do,” said Mom, Kari. “You can’t be spontaneous.”

Because of the planning involved, vacations are often rare for families with food-allergic children. Even taking Jeremy to a local restaurant means not only taking food from home or calling in advance to talk with the chef about a special meal cooked and held separately, it also means wiping down the chair in which he will sit and the table area surrounding him to ensure that he contacts no spilled milk or bread crumbs. While Kari has become less fastidious about the wipe down as Jeremy gets older, they still check out his area for any visible reactants.

Jeremy’s older brother Daniel, 16, considers himself lucky to have the severe allergies to “only” peanuts, tree nuts, soy, fish, lentils, chick peas and peas. “It’s a big impact, but not as bad as milk and wheat,” he said. “I’m lucky in that respect.”

Perhaps luckiest, though, is Jeremy’s twin sister, Joni, who has no food allergies. While Joni would never want to trade places with her brother, however, there is plenty that she, as a family member, has to deal with, and “it’s no fun.”

“It’s hard,” Joni said. “On airplanes, we have to bring huge bags of food. It just kind of makes us different.”

“The hardest part is the annoyance of having to bring food for me every time,” Jeremy agreed. “I don’t mind eating different, but I don’t like carrying it and having to bring it all.”

Would that it were only an annoy-ance. One of the best accounts of living with food allergies is that given by Daniel when asked what he wishes people understood. There are a lot of people who don’t understand food allergies or don’t believe they are really bad, he said. They think that the person can just take a pill and clear up the symptoms. “People think, ‘Oh, you start sneezing.’ No,” he responds. “I start dying.”

As defined on the Food Allergy and Anaphylaxis Network (FAAN) Web site (www.foodallergy.org), “a food allergy is an immune system response to a food that the body mistakenly believes is harmful.” The body’s attempt to rid itself of the harm can cause anaphylaxis. Symptoms often begin with skin tingling or itching or a metallic taste; then move into swelling of the throat or tongue, hives and trouble breathing, a drop in blood pressure, and loss of consciousness, that can be life-threatening if not immediately treated.

According to information from the University of Michigan Health System, the tendency to be allergic is inherited. If one parent has allergies of any sort, each child has about a 40 percent chance of developing allergies. If both parents have allergies, the children’s chances rise to about 75 percent for each child. In the Keaton family, Kari has environmental allergies and Dad, David, has the same, along with food allergies to eggs and nuts – setting the stage for the food allergies of the children.

Thus, while most consumers relate food safety to pathogenic contamina-tion, such as Salmonella or E. coli, in the Keaton’s world, and that of all those with food allergies, food safety takes on a much broader definition. In fact, “Jeremy-safe” food is standard terminology at the Keatons, and grocery shopping is a science in and of itself.

GROCERY SHOPPING. Each family develops its own set of trusted manufacturers and favorite stores. The Keatons shop primarily at Whole Foods Market, partly because, Kari said, natural foods tend to have fewer ingredients, so it is easier to check ingredient lists for the allergens. She also does a great deal of online shopping for items which she can’t find in local supermarkets, such as bread to fit within all the parameters of Jeremy’s non-touchables.

One of the most difficult aspects of grocery shopping is when a company adds a version of a product, but does not significantly change the packaging. A brand which had always been safe in the past may now have a product line with milk or nuts or soy. “You really have to pay attention,” she said. On the other hand, when a product does have a new look, “it’s a good key that you have to look at the label.”

Kari has also gotten to know which manufacturers are particularly allergic-consumer friendly. Although she checks every product label, her comfort level is much higher with companies she has come to know and trust over time, such as Enjoy Life Foods, whose foods are gluten-free and made without any of the eight most common allergens. If she does come across a label with a phrase that is not clear, Kari will not hesitate to call the manufacturer for further clarification. And she teaches her children to do the same.

GAINING INDEPENDENCE. As a high school junior, Daniel is beginning to consider college life. “In college, I can’t go to the supermarket and call Mom to ask about an ingredient,” he said. So he already takes part in checking labels and talking with manufacturers. “I don’t eat foods with labels that say ‘may contain,’” he said. “Even if the risk is one part per million – what if I get that one part?”

The use of “may contain” has grown since FALCPA (the Food Allergen Labeling and Consumer Protection Act of 2006), Daniel said. “It was good to know that the risk was there, but now they have become over cautious. There are certain brands we started calling the ‘laundry list people.’ It seems a no-brainer that they were trying hard not to get sued.”

“Laundry list people” would be companies that include on the label of a jar of peanut butter “may contain peanuts,” or one which includes the entire range of allergens on every product it produces – just in case. Instead of focusing on liability, the companies should cut back on the “may contain” and focus on preventing cross contamination in the plant, Daniel said, adding, “There are very simple cleaning processes.”

When Jeremy was younger, his meals were often completely different than the rest of the family, Kari said, but now she tries to coordinate his foods to the others – though his pasta may be made of rice or corn, or his food cooked with safflower oil. Dealing with the allergies can also make one become very creative with foods. One of Jeremy’s favorite snacks is S’Mores – using rice cakes with chocolate bars made with rice milk.

As rice milk chocolate bars and safflower oil would indicate, grocery shopping for the food-allergic is usually a great deal more expensive than for the average family. Kari estimates the cost of non-allergenic foods to be well over double the price, but says she rarely looks at the cost of these foods. With today’s economy, however, she has start-ed doing a bit more price comparison, but with the limits the food-allergic face – exacerbated by “may contain” labels, there is not always a great deal of choice.

Families of the food-allergic gradually learn the ins and outs of grocery shopping, but it can be off-putting for those new to the task. Besides the prices and “may contains,” allergens are often present in foods you may never suspect need to be checked – do you know that many canned tunas contain soy? Kari buys only tuna packed in water, and checks the label.

It is for such reasons, and the gener-al challenges of the food-allergic life, that many families belong to, and rely on, support groups. Kari is a founding member of the Metro DC Food Allergy Support Group, and the challenges and support of the members were cited often throughout the afternoon; and Jeremy takes part in a school group of affected children.

SCHOOL SUPPORT. Schools, are, in fact, one area which has significantly improved in recent years, due at least in part to increased advocacy. Having dealt with the schools for more than a decade, Kari sees an increase in both awareness and support. “Schools have gotten so much better. You don’t need to convince them anymore that food allergies are real.”

In elementary school, in particular, foods are often used in the classroom to better involve the children in activities. But at Beall Elementary, which Jeremy and Joni attend, teachers Sandra Russell, Michael Thanos and Cindy Kuhn discussed their efforts to stay informed of any allergies of the children they teach and to adapt classroom activities as needed. They will discuss a child’s needs with both the parents and the school nurse, develop interactive lessons with-out foods or with non-allergenic foods, and either avoid foods such as nuts and ice cream at parties or ensure surfaces are completely wiped down afterward.

It is still a parent’s responsibility to inform the school about a child and provide for special needs, such as epinephrine syringes and special foods maintained in the nurse’s office, but school nurses generally have experience with food-allergic children, and teachers are more aware and understanding of the challenges facing these students. Although Beall does not have teacher training in food allergies, Thanos did go through a training program in the district in which he previously taught.

TRANSITIONING TO HIGH SCHOOL. Daniel has found that school has actually become easier as he gets older. At elementary school parties, when everyone else was eating cookies or cake a child brought in, he said, “I ‘got’ to have this treat my mom sent in that’s been in the health room refrigerator.”  The worst though was the African culture awareness event in middle school for which everyone brought food. “There are a lot of nuts in African food. That was a big pain for me.” Those things don't happen in high school, he said, “You don’t have to have food to be involved.”

The one class that he has found can be an issue is a chemistry lesson in which peanuts were burned to demonstrate calories. Because the burning of the nuts puts the pro-teins into the air which would cause a reaction, classes have substituted marshmallows instead.

From young ages, allergic children are also taught to carry and use epin-ephrine syringes, such as EpiPens. In fact, the entire Keaton family has practiced stabbing oranges with the syringes (one aspect that both Jeremy and Joni considered to be fun).

The epinephrine temporarily reverses allergic reaction, and provides time to get to a hospital for further treatment. Daniel carries his EpiPen at all times; because syringes are kept at the school, Jeremy only carries his if he will not be at school or with family.

“Even if I’m not planning to eat anything, I have to have it with me,” Jeremy said, explaining that he could just be out playing with a friend. But if the friend had just eaten cheese and got it on his skateboard, Jeremy could touch the board where the cheese rubbed off, and have a skin reaction. If he accidentally put his fingers in his mouth, he could have an anaphylactic reaction.

It is for this very reason that the EpiPen needs to be on hand at all times – even if the person was not planning to eat. It is also the reason that those with food allergies can never do anything that enables them to lose control. As an example, David relayed the experience of a nut-allergic college student discussed at a teen summit. The young woman, of legal drinking age, was at a party where alcohol was being freely consumed. Having had a bit too much to drink, she started eating spoonfuls of ice cream. By the time anyone realized the ice cream was butter pecan, she was beyond the point of helping herself, and a friend had to use her EpiPen on her.

It is just such lessons that parents of those with food allergies hope their children never have to learn first hand. And yet just such lessons that have to be learned in some form, causing parents to tread the fine line of creating an overprotective bubble vs. letting the child learn to make decisions – while living with the ever-present fear of a reaction no matter which way the parent leans.

It doesn’t help a parent’s worries to know that, in some states, local emergency medical personnel are not all licensed to administer epinephrine; that if it is misapplied it can cause a heart attack, but that when anaphylactic reaction hits, the person has only about 20 minutes, at most, to get treatment.

In addition, there is currently no cure for food allergies; the only option is total avoidance. But avoiding a food to which one is allergic is not as simple as not having the food around, Daniel added. It is more a factor of unknown cross contam-ination.

Most reactions don’t happen because an allergic person “forgot” and drank milk or ate peanut sauce, it is because they ate a cookie or meal that they didn’t know had the allergen in it, he said. It is such accidental ingestion that poses one of the greatest difficulties and greatest frustrations for food-allergic persons.

When a person has severe food allergies, life becomes so much about food, and it doesn’t need to be, Kari said.
Visiting with friends, attending parties and social events, participating in school activities, going on vacation, the first thought is about the food. Families try to avoid the most dangerous situations, but at some point it’s a risk, she said. It’s all about risk and there is always the fear, but you can live in a bubble or you can take the risk and be prepared to manage it should the worst happen.

 The author is managing editor of QA magazine. She can be reached at llupo@giemedia.com.