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The recent death of an 11-year-old boy is a tragic reminder that with food allergies, severe, life-threatening reactions don't always follow the familiar script: sometimes they take time to develop.
Merrill Debbs is convinced that her son, Oakley, might still be alive if she’d known more about food allergies and how fatal reactions can come on slowly and insidiously. The boy, who had asthma and had tested positive for a mild peanut and tree nut allergy, died after consuming a piece of pound cake the day before Thanksgiving. Oakley thought it was safe to eat, but there was a walnut inside and he'd already swallowed it before realizing what happened.
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The only apparent reaction to the nut was a tiny blister on his lip that disappeared after a dose of Benadryl.
“It went away,” Debbs told TODAY. “Whatever was going on inside of him we had no knowledge of. He seemed fine. He went out to play with his cousins, took a shower and brushed his teeth.”
Fifteen minutes later, Oakley came to her, saying, “my tummy hurts.” When he started vomiting, his mother figured that whatever was making his stomach sick would come up and everything would be OK. Afterwards, Oakley told her he felt fine.
But a short time later, her son said, “I’m getting sick again.”
“He started throwing up and from there it was a tornado of issues,” Debbs said. “We called 911. By the time the ambulance got there — about 10 minutes later— he was blue.”
An hour and a half after Oakley had consumed the nut, his airwaves had suddenly closed and his heart stopped.
Trying to bring some meaning to Oakley’s death, Debbs has launched the Red Sneaker Foundation to help educate about the seriousness of food allergies. The Foundation gets its name from the boy's favorite color — all of his athletic shoes were red. His mother hopes the Foundation can inspire a national Red Sneaker calendar day to raise awareness of nut allergies and to keep Oakley's memory alive.
“I don’t think my beautiful, amazing, talented, adorable son should have passed away,” Debbs said, adding that she hopes to get EpiPens in all schools and nuts banned from classrooms.
Though Oakley had tested weakly positive to peanuts and tree nuts, his many life-threatening bouts of asthma had become the main health focus. Still, his family did their best to steer him clear of nuts.
There have been reports of similar slow-motion reactions like Oakley’s, but it's unclear how common they are, said Dr. Ruchi Gupta, an associate professor of pediatrics at Northwestern University’s Feinberg School of Medicine and director of the Food Allergies Outcomes Program at Northwestern.
“We do not know enough about delayed reactions like these that seem to get better but then progress rapidly to death,” Gupta said. “That is why it is so critical to know how to identify a reaction and when and how to use epinephrine."
Epinephrine is the best treatment available for allergic reactions, said Dr. Todd Green, an allergist and an associate professor of pediatrics at the University of Pittsburgh Medical Center.
"It acts throughout the body," said Green.
Even if there are only mild symptoms, experts recommend that the EpiPen should be immediately administered because it's impossible to predict when a reaction will become life-threatening.
While the family had an EpiPen, they never used it because they didn’t realize Oakley was going into anaphylactic shock.
Reactions can be mild, like hives or swelling, but can rapidly deteriorate, Gupta said. The most severe is anaphylaxis, a life-threatening reaction which can impair breathing, cause a sudden drop in blood pressure and affect the heart rate.
Although Oakley didn't have a strong previous reaction to nuts in his allergy tests, "there is absolutely no guarantee that a history of only mild reactions guarantees the same in the future," said Green.
Call 911 and give epinephrine
An estimated 4 to 6 percent of children and 4 percent of adults have a food allergy, according to the Centers for Disease Control and Prevention.
Peanut allergies are the most common, affecting about 2 percent of children across the country.
While fatal reactions are rare, even a small amount of allergen can cause anaphylaxis. "It usually happens rapidly, pretty much on ingestion,” Gupta said.
If someone is accidentally exposed, immediately call 911 and give epinephrine to stop the reaction.
“To see a child pass away is truly heart breaking,” said Gupta.