Parents of toddler allergic to food raise awareness about rare condition
WATCH ABOVE: Su-Ling Goh tells us about a young Edmonton-area girl’s rare allergy that makes all food potentially life-threatening.
EDMONTON — Kids often have something they just don’t want to eat. But for 14-month-old Kala Sweet, every food is something she can’t eat. In fact, even one bite of food — any food — could kill her.
Her rare condition takes baby-proofing to a whole new level. It also makes meal time at the Sweet household a challenge.
“Sometimes we’ll set her up at the table and…we’re pretending to feed Kala at the same time we’re feeding [her big sister]. So she’ll have a little plastic dish and she has a spoon and she just pretends to eat with us,” said her father, Arian Sweet.
“It’s really sad that we have to teach our three-year-old to tell our 14-month[-old], ‘no, you can’t have food,'” his wife, Erin, said.
Aside from keeping a constant eye on Kala, the mother says she vacuums three times a day to make sure there’s no food Kala could put in her mouth.
The toddler suffers from what’s called Food Protein Induced Enterocolitis Syndrome (FPIES), which pediatric gastroenterologist Dr. Matthew Carroll describes as a delayed reaction to food.
According to Carroll, the symptoms can range from severe vomiting to diarrhea, low blood pressure or a high heart rate. In Kala’s case, the vomiting would start two hours after she ate.
When Kala was being breastfed as an infant, doctors thought they’d found the problem: a cow’s milk protein allergy. But when her parents were given the go-ahead to feed Kala puréed food at seven months, they discovered she reacted to everything she consumed.
“She just eats her food, as any child would, and it sits in her belly, and then her body rejects it. And she’s violently vomiting, diarrhea, until there is nothing left in her,” her mother said.
She found her seven-month-old nearly lifeless in her crib after giving her puréed chicken.
“She was pale, her eyes were darting off and she didn’t even know I was in the room. When I picked up my baby, she just flopped onto my shoulder, and I wasn’t sure if she was alive or not. And the only that was associated with that, was food.”
The parents rushed her to hospital and after three days of biopsies, blood work, X-rays, and skin tests, they finally learned what was wrong with their baby.
Carroll, who works at the Stollery Children’s Hospital in Edmonton, made the FPIES diagnosis. He says the condition is so rare that it is often misdiagnosed. And since symptoms can take up to 72 hours to appear, it can sometimes be misconstrued as a stomach flu.
Due to the severity of Kala’s reaction to food, she can only have Neocate: an expensive amino acid formula which Alberta Health agreed to cover after Carroll wrote a letter.
“She doesn’t get those messy, spaghetti on your face [moments]…no first birthday cake,” her mother said. “We try to make it as special as possible for her but it’s difficult that she can’t enjoy that part of life.”
Fortunately, Carroll says most kids are able to grow out of the condition. When she’s two, Kala will be able to try food again under strict medical supervision in hospital.
Until then, the Sweets hope sharing her story will help other families and medical professionals recognize FPIES, and prevent other babies from being misdiagnosed.
With files from Su-Ling Goh, Global News
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