John Hemme gripped the empty formula can as he toddled toward his mother, Margie, who sat on the couch waving a bottle toward him.
“Bubble,” said 17-month-old John.
“Bottle?” his mother said, coaxing him to take a quick drink before taking off again across the carpet. The formula in the bottle is the only thing his parents have found so far that little John can stomach.
After months of constant, daily vomiting no matter what he was fed, John was finally diagnosed seven months ago with eosinophilic esophagitis, a rare disorder in which immune cells that normally react to viruses or allergens line his esophagus, where they are normally not found.
Though several allergy tests showed that he might be able to tolerate a certain kind of food, there is not one yet that does not trigger a reaction, his parents said.
It began the day after he was born, with vomiting and spitting up, and continued nonstop, Margie Hemme said.
“By two weeks he was profusely vomiting,” she said. “It was constant throwing up.”
In those two weeks, he went from nearly nine pounds at birth to seven pounds. What followed was months of misdiagnosis – that it was just reflux disease, that he was just “spitting up,” that it was milk intolerance, Margie Hemme said.
When the violent vomiting continued and John was growing slowly and missing developmental milestones, she decided to switch pediatricians.
The new doctor referred her to a gastrointestinal specialist. An endoscopy revealed the problem and at 10 months he was finally diagnosed correctly. For the past several months, all he has been able to ingest is EleCare hypoallergenic formula from a bottle.
“He’s improved leaps and bounds from eliminating all food,” Margie Hemme said.
The disorder affects about one in 2,000 kids and has increased two- to tenfold over the past 10 years, according to the American Partnership for Eosinophilic Disorders.
That is probably for two reasons, said Dr. Glenn T. Furuta, the director of the Gastrointestinal Eosinophilic Diseases Program at Children’s Hospital Colorado and National Jewish Health.
“I do think it is happening more frequently now, but the other is people weren’t looking for this,” he said. “They really didn’t know what it was. They didn’t even know that it existed.”
As recently as five years ago, there weren’t even clear clinical guidelines to diagnose it, Furuta said, adding that there can be a wide spectrum of severity.
“It is unusual to not have any foods that they can tolerate, but it does happen with some,” he said.
Treatment is typically diet restriction or steroids.
“We use both, but we try to individualize with the family’s needs and what their concerns are,” Furuta said.
The Hemmes said they are not choosing steroids for now because of concerns about the drugs affecting John’s growth, which is already somewhat behind. He only started walking a few weeks ago, though he zips along now, picking up cars and racing them off tabletops, throwing and chasing a big blue ball.
“Ball,” John said, which is one of his “B” words.
“I don’t know where he learned ‘bubble,’” Margie Hemme said.
Because he will only take a bottle, which his parents have to hold for him, eating out can be awkward and invite rude stares. Servers have a hard time understanding why his parents don’t order for him, Doug Hemme said.
“People try and push children’s menus on us,” he said.
While he undergoes therapy to help him catch up physically, his parents are getting ready to start another food trial, hoping “to find any safe food that will give him all the nutrients he needs” and that will stay down.
Wearing a shirt meant for a 9-month-old, John smiled constantly as he raced around his living room, hunting down more cars as his parents kept a watchful eye on the three baby gates.
“He likes to go where he’s not supposed to,” Doug said, smiling.
“Everyone tells me he’s the happiest baby they ever saw,” Margie Hemme said. “People don’t believe he’s sick.”