The Allergy Buster
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.
By MELANIE THERNSTROM
Published: March 7, 2013
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.
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.
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