Food allergy dangers lurk at every corner
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BY RHODA FUKUSHIMA / Knight Ridder Newspapers
ST. PAUL, Minn. — Four-year-old Delson Hays finishes his Rice Krispies, soy milk and egg-free, nut-free, gluten-free, dairy-free muffin. He “decrumbs” after meals, brushing food particles from his shirt and using a Dustbuster to vacuum them. Then, he washes his hands.
Specially prepared foods and meticulous cleaning habits are enforced by his parents. They understand that a whiff of peanut dust could kill their son.
Typically, food brings people together. But food allergies isolate them. They dictate the smallest details of daily life, from a father’s beard-washing routine to the gluten-free play dough at preschool. Parents of allergic kids struggle to keep them safe without making them ultra-fearful. Family, friends and strangers don’t always understand the seriousness of allergies, so parents who take precautions are sometimes seen as extreme, oversensitive and paranoid. Despite the judgment, they must remain vigilant.
While not new, food allergies have been in the spotlight lately.
In January, new food-labeling laws went into effect requiring manufacturers to disclose, in plain language, the presence of major allergens. The same month, investigators seized bread from French Meadow Bakery, claiming that the Minneapolis business falsely advertised its loaves as “wheat-free.”
Such changes are good news for people like Delson, one of 11 million Americans with food allergies. (He’s allergic to wheat, eggs, beef, bison, mustard, sesame, dairy, peanuts, barley, peas and tree nuts, which include almonds, walnuts and pecans.)
In the United States, eight foods account for 90 percent of all allergic reactions. Each year, allergic reactions to food put 30,000 people in the emergency room. About 150 to 200 people die each year from anaphylaxis, according to the Food Allergy & Anaphylaxis Network in Fairfax, Va.
About 90 percent of allergy deaths stem from peanuts and tree nuts, says Dr. Thomas Helm, a Twin Cities allergist and medical adviser to the Food Allergy Support Group of Minnesota. Shellfish is second.
“There’s something more nefarious about these allergies,” Helm says.
People ages 15 to 40 are at the highest risk of death. Last fall, a 15-year-old Canadian girl with a peanut allergy died after kissing her boyfriend, who had eaten a peanut butter sandwich hours earlier.
Food allergies are among the immune-system conditions that make up what doctors call the “atopic march.” That’s where children with eczema as babies may later develop food and other allergies or asthma.
Children have a 70 to 75 percent chance of outgrowing common childhood allergies by adulthood, Helm says. That percentage is much lower for people with peanut and tree-nut allergies. Only 20 percent of those with peanut allergies outgrow them.
The Hayses, of Minneapolis, do not know if Delson will outgrow his allergies; that’s too far in the future.
“I don’t worry much about what happens tomorrow or 10 years from now,” Karen Hays says. “Probably because I work so hard in the moment to make sure everything is OK right now.”
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The Hayses enjoy food. Both Karen, 32, and her husband, Bart, 36, love to cook. Before having children, they ate out frequently. While pregnant, Karen daydreamed about the delicious foods she would cook for her child, dishes from her own childhood. She also experienced severe morning sickness and lost weight. She stopped eating dairy foods, which made her feel better. As a precaution, she eliminated peanuts.
Delson was born Sept. 24, 2001. Karen exclusively breast-fed him, but he was always “a spit-uppy, colicky, rashy kind of scaly kid.”
Her instincts told her something was wrong, but their pediatrician said Delson was too young to have food allergies. With her doctor’s approval, she began to eat dairy again, starting with a daily sliver of cheese. On the fifth day, Bart called her over to see Delson.
His face was swollen. He had hives and itchy eczema.
Their pediatrician told them to give it time. With summer approaching, he expected Delson’s problems to clear up. Something told Karen otherwise, but she followed the doctor’s advice.
At 9 months, Delson hadn’t improved. He had bad bouts of diarrhea. He had weeping eczema sores on his face and body. He’d rub his legs together like a cricket. He’d scrape his thumbs across his teeth until they bled. The Hayses put socks on his hands and countless creams on his body.
“People would stop and ask me if he had rug burns on his face,” Karen recalls. “As if I dragged him by the legs face down on the carpet.”
The pediatrician finally recommended they see an allergist. Delson tested positive for milk, almond and peanut allergies.
“I thought: ‘Thank goodness. At least we can have wheat,“’ Karen said.
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Karen and Bart took different approaches to the allergies.
Now a stay-at-home mom, Karen, a former geochemist, became the allergy expert, researching and preparing for worst-case scenarios. Bart wanted to see what developed first and then react.
“Part of that was trying to temper the situation,” Bart says. “Part of that was protecting myself from thinking the worst. The more we learned about it, the bigger deal it was.”
Over time, the Hayses discovered more foods that Delson couldn’t eat. He also developed asthma.
As a precaution, the Hayses removed fish and shellfish from his diet. Jell-O gave him diarrhea, while beef and eggs made him throw up. Wheat flour gave him hives, itchy eyes and a runny nose. When Karen, who was still breast-feeding, stopped eating tree nuts, his weepy, crusty eczema disappeared. He could eat soy, so a blended mixture of tofu, fresh pears and blueberries became a mainstay.
“We started realizing it’s not just about him accidentally eating a chocolate chip cookie; it’s about something I might have eaten and him getting into the crumbs on the table,” Bart says. “There was an element of panic: How deep will this be?”
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Now, the Hayses eat like Delson. It’s easiest and safest for everyone.
Karen keeps a binder of recipes she has gathered from other families in the same situation. She threw out all her old, contaminated cooking utensils and cutting boards and bought new.
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Delson’s reactions have come at unexpected times. Once, he developed a runny nose and swollen lips while near a bird feeder. The Hayses think peanut dust from bird food caused it. Another time, he broke out in hives after his grandpa — who had just been to Dairy Queen — gave him loose change for his piggy bank.
The Hayses treat all of Delson’s reactions as if they could be life-threatening.
He’s never far from a fanny pack with his EpiPen, an injectable medication that counteracts severe allergic reactions.
The Hayses struggle to find the right balance between telling Delson enough, but not too much, about his allergies. He knows not to use water fountains and to take food only from his parents. They explain that some foods aren’t good for his body, but they don’t want to scare him by saying, “This could kill you.”
Still, they worry that he has picked up on their fears.
“I feel like I’ve unwittingly groomed Delson to be leery of other kids,” Karen says. “But that’s the reality. That is where a lot of the danger lies.”
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Two years ago, the Hayses felt they were getting a grip on Delson’s allergies. They decided to have another child. Even if the baby had food allergies, they felt they could handle it.
Their second son, Mosely, was born in March 2005.
As she had with Delson, Karen exclusively nursed Mosely. He began having bloody diarrhea. Over time, Karen eliminated all of Delson’s allergens from her diet, plus several others. In the end, she was subsisting on sweet potatoes and white rice.
“The idea of my not being able to feed him was sickening,” she says. “How can I not breastfeed my baby? I felt powerless.”
Mosely was diagnosed with allergic colitis, which means he can’t tolerate food proteins. Last fall, the Hayses switched him to a special formula, which costs them $525 a month and is not covered by insurance, a situation they and other food-allergy activists plan to discuss with legislators.
In addition to the expense, they’ve had to add even more rigor to their food-preparation routine.
One kitchen counter is exclusively for preparing Mosely’s formula. For now, they keep him away from all foods.
When Bart comes home from his design job, he washes his beard thoroughly to get rid of any hidden food particles. One evening, he ate a carrot and, without thinking, started preparing a bottle for Mosely. His wife stopped him.
“I just don’t have it internalized,” he says. “I get out of that world for a while at work and then come back to it. You really have to change gears.”
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Last year, Delson started preschool two afternoons a week at Fraser School in Minneapolis. Thirty percent of Fraser’s students have special needs, says Kari Dahlstrom, the school’s communications director.
The school follows a detailed health plan to manage Delson’s allergies. At snack time, his teacher sits between him and the other students as he eats his snack from home. During free play outside, teachers watch him closely for signs of asthma, which seems to be worsening.
He uses wheat- and gluten-free play dough and allergen-free finger paints provided by Karen. She donated a big bag of Smarties — the only candy Delson can eat. Bart designed a colorful and informative poster showing what Delson cannot eat.
Delson’s teacher, Adrienne Steele, says Delson’s classmates take pride in helping their friend.
“We bring oranges and apples that he can eat,” says Camryn Simmons, 5.
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Karen and Bart struggle to manage the expectations — and judgments — of others. They’ve been accused of being paranoid, overprotective and not cut out for parenting.
“We’re not going to base our behavior on what others might believe,” Bart says. “We’re going to focus on doing what we think is right.”
They make it a point not to isolate themselves. Armed with medical supplies, snacks and hand wipes, they go to the Children’s Museum but ask strangers to observe the “no food allowed” signs. They’ve declined neighborhood parties and potlucks but have organized food-free Halloween celebrations.
Last Christmas, Bart’s aunt hosted a holiday party. Usually, Karen and Delson eat their own food, apart from the others. This year, the hostess used special utensils and equipment to prepare a meal that everyone could eat — ham, herbed rice, broccoli, fruits, salad.
“It was a real gift,” Karen says.
While all their relatives are not as accommodating, the grandmas know how to prepare safe meals.
In January, the family ventured out to Fraser School’s Winter Performance, a first for Delson. Karen worried about refreshments. Would there be cookies, bars or other potential allergens that could set off allergic reactions?
There were none, but then the candy came flying out of the air as kids on stage threw sweets to the audience.
“I grabbed my infant son and ran for cover,” she says.
Oblivious to his mother’s reactions, Delson went to play with blocks.
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