Tiny superhero aims to bring big attention to food allergies

The Butler family of Findlay includes mom and dad Cortney and Derek, and Tobias and Irisa. Tobias, who will be 2 in October, has extreme food allergies, which appeared when he was just 6 days old. At 12 months old he tested allergic to dairy, eggs and peanuts. Skin prick tests have since revealed a slew of other allergies. His parents are now working to educate others on the seriousness of food allergies, which includes participating in the Food Allergy Heroes Walk in Cleveland on Aug. 5. (Photo by Randy Roberts)

By SARA ARTHURS
STAFF WRITER

Cortney Butler used to shrug off concerns about food allergies as no big deal. Then it happened to her family and she became one of “those people” — the people who wipe down all surfaces, batch cook food ahead of time and warn their extended families to keep certain dishes away from their children.

Her son, Tobias, will be 2 in October. When he was just 6 days old, Cortney and her husband, Derek, noticed some red splotches on Tobias’ skin. They thought it was a heat rash, so they tried to keep him as cool as possible. When it failed to go away, they called their pediatrician.

The doctors thought Tobias was allergic to milk, and advised them to switch to a special formula.

But then, at 4 or 5 months old, Tobias transitioned to eating solid foods like fruit. And they kept discovering more and more food allergies. Tobias’ face turned bright red after he consumed a small jar of mangoes, and his parents kept removing foods from the list of things he was allowed to eat.

Tobias got a blood test at 12 months old, and tested positive for allergies to dairy, eggs and peanuts. Cortney felt, “at least we had some answers,” but he kept breaking out. Doctors did a skin prick test, then another. They learned he was also allergic to corn, shellfish, eggs, ragweed pollen, tree pollen, tomatoes, hazelnuts, pistachios and almonds. He cross-reacts to related foods — for example, mangoes are in the same family as some nuts, and lentils and peas are legumes like peanuts.

Cortney became anxious about taking her son anywhere. Tobias is so sensitive he can react if he contacts a surface that has been touched by peanut butter.

He’s also allergic to nickel and lanolin.

“Thankfully, he wasn’t allergic to cats,” Cortney said.

That’s a good thing, because big sister Irisa, 3, is fond of cat Sybil.

Also, Tobias is not gluten-free, so he can eat wheat, as well as meat and many vegetables. (And he’s allowed one of the staples of toddler diets, Cheerios.)

His parents suspect he has a nightshade allergy, which includes not just tomatoes but related vegetables like eggplants. It also eliminates some seasonings.

“You don’t really think of food as your enemy,” Cortney said.

Cortney said a previous roommate had a peanut allergy and a latex allergy. But Cortney never saw a reaction, so, “We didn’t take it so seriously.” And, she said, people sometimes say they’re “allergic” when they mean they don’t like a particular food.

Her own family always ate whatever they wanted.

“And then it happened to us,” she said.

She, too, has had to educate extended family, who didn’t understand the seriousness at first.

People would say, “‘Oh, it’s just a little bit.’… A little bit could kill him,” Cortney said. She tells them, “We’re not trying to hurt your feelings. We’re trying to protect our child.”

She’s had to educate Irisa, too, that it can be dangerous if she drinks milk and doesn’t wash her hands afterward. Irisa tells everyone that her brother has allergies and can’t have certain foods.

Cortney does a lot of batch cooking. She makes a “nomato” sauce for spaghetti and pizza, involving beets, carrots and onions. She gets recipes from cookbooks and online, and creates substitutions, such as coconut milk for sour cream. Her mother helps with the cooking, and the whole family is careful to avoid cross-contamination.

Cortney has a history of medical issues herself, among them endometriosis and ovarian cancer. She has encountered the attitude, “Maybe it’s in her head,” and had to advocate for herself for years. Now, she’s advocating for her son.

Cortney documented the reactions her son had to foods, taking photos of his breakouts to show doctors.

And she must always keep a watchful eye, including when Tobias goes for his sister’s snacks.

“Every aspect of your life changes,” Cortney said.

Cortney is part of a food allergy mothers’ support group on Facebook. It’s a big community, and “You’re not a part of it until you’re a part of it,” she said. The other mothers know the frustration of spending hours preparing food, or taking hand sanitizer everywhere you go and wiping down surfaces. They know, too, the struggles of feeling like a helicopter parent.

“Nobody wants ‘that person’ around,” she said.

She wouldn’t have, either, until she became “that person.”

“I’m not doing it to be a pest,” she said.

She said a child with extreme food allergies can create a sense of loneliness. And food and medical care for these children is expensive.

Cortney keeps EpiPens within reach, and has had to use them when Tobias accidentally came into contact with, for example, peppers.

Recently, Tobias started having even more severe reactions than before, including breaking out and very swollen legs. He is awaiting more testing to see if his allergies might be caused by a blood condition, which could mean other related, potentially serious health problems.

Cortney herself, meanwhile, is again having health concerns of her own and will be having surgery, so she’s feeling a lot of stress at once. But there are also moments of humor. Irisa is excited to start preschool, but warned her mother: “Mommy, I can’t take you to preschool. You have to stay here.”

While people are trying to raise awareness of other issues like drug addiction, Cortney said food allergies aren’t talked about as much. Her family is trying to raise awareness, and plans to participate in the Food Allergy Heroes Walk in Cleveland on Aug. 5. The event is a fundraiser for Food Allergy Research and Education.

“He is Team Allergy Boy,” Cortney said of Tobias.

She intends for him to wear a “little superhero costume” to reflect this identity. Irisa, meanwhile, is “Awareness Girl.”

There are 15 million people in the United States who have food allergies, Cortney said. And every three minutes, a food allergy reaction sends someone in the U.S. to the emergency room, according to her FARE walk website.

She said Tobias “will have a hard life” if he doesn’t grow out of his allergies. Ordinary activities like going to a restaurant or a class party will be a challenge.

“It will make him different,” she said.

But she noted ovarian cancer is signified by a teal ribbon — and so are food allergies.

“It’s so perfect that he’s mine,” she said.

Arthurs: 419-427-8494
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Twitter: @swarthurs



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