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Caio Neves eats every three hours. Lunch is rice and potatoes. Dinner is vegetable soup. And he has enriched formula for breakfast, mid-afternoon and before bedtime. Caio is 14 years old.
He is living with severe food allergies, and he and his family have spent much of his childhood dealing with what has turned out to be eosinophilic gastritis (EG). It’s not just gluten, or peanuts, or another food commonly associated with allergies that Caio can’t eat. Nearly every food seems to inflame his stomach.
“I don’t remember exactly when it started, but I do remember suddenly not being allowed to eat many things,” Caio said. Relentless abdominal pain and vomiting led to the food allergy diagnosis in his home country of Brazil in 2005.
In 2011, his gastroenterologist, Aderbal Magno Caminada Sabra, diagnosed Caio with EG after finding an infiltration of eosinophil cells in Caio’s gastrointestinal tract and high immunoglobulin E levels in his blood. He prescribed an extremely limited diet of bland foods that Caio could tolerate, including an amino acid-based hypoallergenic formula.
While Dr. Sabra has been able to help Caio continue to develop normally, he saw how EG has eroded the quality of life for the growing teenager and his family. Dr. Sabra, the first gastrointestinal fellow at the University of Colorado School of Medicine in 1972-73, conferred with Caio’s father, Lincoln Wolf, earlier this year. It was time to turn to the experts on this rare and complicated disease.
Multidisciplinary, individualized care
Eosinophils are white blood cells that help the immune system and normally make up about 1% to 6% of white blood cells. Allergic reactions can occur when there’s a dense infiltration in the skin (eczema), lungs (asthma), nose (allergic rhinitis) and gastrointestinal tract (food allergies). No one knows why some people have eosinophilic infiltration, or how they get sick. The focus of treatment is helping patients manage their condition.
Managing Caio’s EG requires a multidisciplinary medical team specializing in individualized care, which is the strategy behind the Children’s Colorado Gastrointestinal Eosinophilic Diseases Program (GEDP). Dr. Sabra referred Caio to the GEDP, and recently accompanied him and his family on their journey.
Caio’s father, Wolf, said they traveled the 5,000 miles to Children’s Hospital Colorado because of the expertise and published research of GEDP Director, pediatric gastroenterologist Glenn T. Furuta, MD.
"When we researched [Caio’s condition], Dr. Furuta’s name came up again and again in the medical studies,” Wolf said.
Caio, the program’s first patient to come from outside of North America, underwent allergy testing, an impedance-pH monitor to measure the amount of reflux, an endoscopy, and upper GI series. The tests confirmed EG, and the results are helping guide Caio’s medical team, which includes clinical dietitian Michelle Henry, MPH, RD, pediatric allergist David M. Fleischer, MD, Dr. Furuta and Dr. Sabra.
Based on the results of these tests, the team of experts, together with Dr. Sabra, Caio and his father, developed a treatment plan that includes dietary management, medications and follow-up testing to ensure that Caio’s EG can come under control. This individualized plan, a specialty of the GEDP, is based on how to treat his disease while also improving his quality of life. The GEDP uses their experiences in caring for patients with these rare diseases to establish a well thought out plan.
A tough guy
Part of what drove Dr. Sabra to seek out experts was his patient’s compliance. Caio has done everything asked of him: he drank the expensive and unappetizing formula (most kids in Caio’s situation take it through a tube in their stomach), and he adhered to the strict menu and feeding schedule, even though it interfered with being goalkeeper for his school’s soccer team. He sees a personal trainer who helps manage his exercise, an important responsibility given that Caio shouldn’t sweat too much because he loses protein that way. He is now stronger, more active and can even run.
“He is a tough guy,” says Wolf.
Caio, Wolf and Dr. Sabra have returned home to Brazil. Long distance, the Children’s Hospital Colorado GEDP team will work with them on diet and medication, with the goal of getting inflammation under control, reducing symptoms and identifying foods that are causing the problems.
“We’re optimistic,” said Dr. Fleischer. “He is growing and developing normally. We know the problem and treatment plan. Now we want to make life better for Caio and his family.”