Our patients’ stories: understanding (and beating) eosinophilic esophagitis

As an infant, Cameron Newbold hated eating. That’s not to say he was a finicky eater like some babies; he actually dreaded feeding times.

“Anytime we tried to feed him he’d freeze up, stiff as a board,” remembers his mother Kristina. “It was like he knew the food was making him sick. It was terrible.”

During feedings, Cameron cried, squirmed and would never eat more than a few ounces at a time. At 5 weeks old, he was hospitalized because he stopped eating, but a conclusive diagnosis couldn’t be found. The Newbolds left their local hospital with medication for reflux, a child who was still sick and few answers.

Over the next few years, Cameron was tested for dairy aversion and various food allergies, but most of the testing was inconclusive. He lived almost exclusively off soy yogurt (Kristina believes the cool, smooth food was soothing to him) and often felt too sick to play with other children, which affected how he related to his peers.

“Looking back now, it’s clear that Cameron felt sick just about all the time when he was younger,” Kristina says. “But because that’s all he had ever known, he didn’t really know how to express his discomfort, or when he felt worse than usual. As far as he knew, constantly feeling awful was what life was.”

Cam

After years of inconclusive tests and hopes that Cameron would eventually outgrow his food reactions, doctors began giving a then 7-year-old Cameron endoscopies, which eventually indicated that the young boy had eosinophilic esophagitis (EoE), a severe allergic inflammation of the esophagus that causes his body to have terrible reactions to a wide range of foods. When a person with EoE eats, his immune system can mistake certain foods as invaders. This causes white blood cells to attack the esophagus and can lead to terrible pain in the stomach and esophagus area.

The Newbolds were relieved to have a name for the phantom ailment that had plagued their son his whole life, but were also distraught by the lack of information available about the disease and its treatment—both for themselves and Cameron’s doctors. (It’s a rare and newly recognized disease, so literature on it is limited compared to most medical conditions.)

And while their Internet searches on the topic didn’t turn up a wealth of information, it did lead them to Boston Children’s Eosinophilic Gastrointestinal Disease (EGID) Program, a multidisciplinary clinic that specializes in children with conditions where high levels of eosinophils—a type of white blood cell involved in allergic reactions—affect one or more parts of the digestive system. They quickly made an appointment with Boston Children’s EGID team and haven’t looked back since.

John Lee, MD, one of the many members of Cam's care team

“From our very first visit, we’ve always felt more like we were part of a team than patients,” Kristina says. “When we first met with Drs. Rubinstein and Lee I was blown away by how well they understood Cam’s condition and what he was going through. They had read his case so thoroughly in advance it was like he had been their patient for years. Ever since we walked through the door, I’ve felt that they’ve been just as concerned with getting Cam to feel better as we were.”

In addition to seeing doctors in the EGID Program, Cameron and his family also met with a Boston Children’s nutritionist who helped ensure Cameron was getting all the nutrients he needed and taught them coping mechanisms designed to reduce the anxiety Cameron associates with mealtimes.

On top of the team’s substantial understanding of EoE, Kristina says the fact that the EGID Program is entirely pediatric-focused is what sets it apart. Cameron’s clinicians always carefully explain his condition and its treatment to him directly— not through mom and dad—which Kristina says makes her son feel more comfortable and in control.

“Before coming here, Cameron had been through so many skin prick tests [an allergy diagnostic method] he was terrified of needles,” she says. “But at Boston Children’s, the nurses and doctors know how to talk to kids and conduct the tests in a way that’s less frightening or painful. It makes a tough situation so much better.”

Currently, Cameron’s treatment consists of an elimination diet—where potential trigger foods are identified and avoided—and a medical steroid mixture that coats his esophagus to reduce inflammation and keep his body’s high level of eosinophils at bay.

Thus far, the combination is working. These days Cameron can eat almost any food he wants, with very few reactions. He receives a few endoscopies a year to monitor his eosinophil count, and so far his care team is very optimistic about the results.

These days Cam is enjoying eating instead of dreading it

In fact, Cameron is responding so well to treatment that his doctors recently gave him the green light to try dairy, which had long been one of Cameron’s most difficult trigger foods. He’s taking to the new menu quickly; ice cream and pizza—two foods denied to him for years—now sit in the top spots on his favorite food list.

“I think he sampled a new type of ice cream every night for a week once he was told he could,” Kristina says. “It was so awesome to watch his eyes light up with every new flavor. We’ve had to scale back his ice cream a bit, but I’m so thankful he got to experience it all.”

Interested in learning more about Boston Children’s treatment options for kids with EoE? Visit their website.