Can a Radical New Treatment Save Children With Severe Food Allergies?

Art Streiber for The New York Times

Dr. Kari Nadeau, who is conducting a trial to desensitize children with multiple food allergies, with some of her patients.

For nine years, the greatest challenge Kim Yates Grosso faced each day was keeping her daughter Tessa safe. Tessa was so severely allergic to milk, wheat, eggs, nuts, shellfish and assorted other foods that as a toddler she went into anaphylactic shock when milk fell on her skin. Kim never left her with a baby sitter. She slept with her each night. And when she needed to work, she found a job she could do primarily from home in the evenings. She successfully lobbied the Menlo Park, Calif., school district to provide Tessa with a full-time aide (in accordance with the Americans With Disabilities Act) to shadow her at all times. She made all of Tessa's food from scratch, including safe treats to bring to birthday parties, when she could persuade her daughter to attend them at all. Tessa never spent the night at a friend's house — she didn't feel comfortable sleeping in an unsafe environment.

Art Streiber for The New York Times

Jack, who has been seeing specialists since he was an infant, with a cake on his eighth birthday.

Originally Kim insisted the whole family eat only the foods Tessa could, but then she realized it wasn't fair for her younger daughters not to be able to eat like other kids at school and birthday parties. Suppose you couldn't walk, Kim said, explaining her thinking to Tessa; should I make your sisters sit in wheelchairs too? Kim herself kept to Tessa's diet, however — Tessa never saw her mother so much as add milk to her tea.

Yet this carefully constructed world was in constant danger of collapse. In 2011, Tessa almost died twice. First, when she was 7, a piece of rye toast turned out to contain traces of wheat. Then, 10 months later, Kim took a small uncharacteristic break from their rigid food routine and bought some Vietnamese summer rolls from a restaurant after quizzing the staff about each of the ingredients. But the clear noodles that she was told were rice turned out to be made of wheat, and soon Tessa was losing consciousness. She didn't have hives or other external signs parents often rely upon, but internally her body shut down. At her doctor's office, the medical team had to use two EpiPens, adrenaline-loaded syringes, along with steroids and an array of drugs to bring her back. (Injected adrenaline is the only known antidote with the power to arrest anaphylactic shock, the allergic-immune response that causes tissues throughout the body to swell until the windpipe closes, the lungs collapse and the heart fails.)

A week later Tessa began having panic attacks. She no longer wanted to leave the house without her mother — even to go to school or diving practice. She was afraid to eat. "Her belief was, If I don't eat, I can't die," Kim recalled in one of our many conversations over the last year. When Kim went away for the weekend, she returned to discover her daughter had eaten only one bowl of plain white rice in 48 hours. At school Tessa didn't want to touch anybody or anything. What if at recess the kickball had rolled through a splash of milk or some bread crumbs in the courtyard where kids ate their lunches? Costly sessions with a child psychiatrist were of limited value. Treatment for obsessive-compulsive disorders like germ phobia teaches the sufferer to distinguish anxiety from reality, but the reality for a severely allergic child is that invisible trace contaminants can kill.

Kim, a pretty 42-year-old with wholesome girl-next-door looks, has a particular optimistic energy indigenous to Silicon Valley: an entrepreneurial drive, buoyed by a sunny, hopeful Northern California temperament, embedded in a community of people who make dreams — at least of a certain sort — come true. Although she and her husband, Andy, an executive recruiter, were not in a position to write big checks, Kim had been involved in enough philanthropic efforts to know she could mobilize tremendous resources. She grew up in the area and was the kind of person who couldn't walk into a coffee shop without people coming over to thank her for her help with some enterprise or to try to enlist her for another.

Kim realized that her daughter was born on the cusp of an epidemic. When milk first splashed on Tessa's skin, Kim was thrust into a strange, lonely world, where few parents shared or understood her anxieties. In the following years, however, she watched food allergies explode into a major public-health problem. The rate of food allergies has more than doubled over the past decade, and there are now an estimated 5.9 million children in the United States with food allergies (along with another 2.3 million adults); to put it another way, in every classroom, roughly 1 in 13 children will have a food allergy. That number may rise in the future, as food allergies are now even more prevalent in children between 3 and 5 years old — nearly 1 in 10 preschoolers — and it seems as if children aren't growing out of their allergies at the rate they did before. In our children's (nut-free) nursery school, their EpiPen packs are on a shelf with five others — the first time their teacher has seen that many in her long career.

In April 2009, Kim heard that Kari Nadeau, an M.D./Ph.D. and an associate professor of allergies and immunology at Stanford University School of Medicine and Lucile Packard Children's Hospital, was giving a lecture at Stanford. Kim had recently flown across the country to meet an expert in New York to see if anything could be done for her daughter. He wasted no time in telling her, "We're not hiding the answer under a rock here," and advised her simply to continue their regimen of strict avoidance. While young children frequently outgrow allergies, Tessa's case offered little hope, because her blood work showed high quantities of an immune protein called IgE, which is used as a marker of the severity of the allergic response.