TOPEKA, Kan. (AP) — The family of a northeast Kansas baby with a rare digestive disorder is trying to find something she can eat besides a bland-tasting medical food that’s mixed with water, but so far the only thing she can tolerate is squash.
Anything else Maehlee Her eats makes her sick, the result of white blood cells in her esophagus mistaking food for a foreign invader and trying to fight it off, said her mother, Marci Flory.
The 1-year-old fell ill soon after being born in April 2013, vomiting nonstop and screaming 24 hours a day, Flory told The Topeka Capital-Journal. A doctor suggested the baby had colic or acid reflux, but it wasn’t colic and three prescriptions for acid reflux didn’t help.
“I told them I didn’t know what to do,” Flory said. “‘She hasn’t eaten for 15 hours. You feed her.’”
Flory took the girl to Children’s Mercy Hospital in Kansas City, Missouri, where doctors found white patches in her throat and a biopsy showed high levels of white blood cells.
Doctors said Maehlee had eosinophilic esophagitis, a digestive disorder. They told Flory and Kao Her, Maehlee’s father, to take her off all food and put her on Elecare, an amino acid-based medical food.
At first Maehlee had to consume the Elecare through a feeding tube that ran through her nose and into her stomach. Eventually she started drinking the medical food — which Flory said has a nasty flavor — from a bottle.
“It tastes like cardboard,” Flory said. “It’s the most disgusting stuff I’ve ever tasted.”
Maehlee now is undergoing a series of food trials in which she tries one food at a time to see if it spurs the disorder. In the first trial, she ate white potatoes, apples and bananas, and her parents are awaiting results of her latest endoscopy exam.
The goal is to be able to find enough foods that she can safely eat and not have to have the medical food, Flory said. So far, squash is the only thing on that list.
While the Eudora family’s insurance has paid for Maehlee’s doctor’s appointments, a hospital admission and endoscopy exams, it doesn’t cover the $600 to $900 a month cost for medical food.
Meanwhile, the girl’s parents hide their own eating from their daughter because she wants to have what they’re eating.
“We have to hide it from her, which is not very fair,” Flory said. “With all the appointments, it’s a struggle to keep her feeling good every day and to keep up with all our everyday business.”
Information from: The Topeka (Kan.) Capital-Journal, http://www.cjonline.com