Toddler struggles with rare disorder ; Digestive disease complicates eating
By Steve Fry; Steve Fry [email protected] | |
Proquest LLC |
Thirteen-month-old Maehlee Her found a doughnut crumb on her grandmother's floor on a recent Thursday morning and plopped it in her mouth to munch.
Seconds later, she vomited.
For Maehlee, food isn't a friend.
"She didn't sleep, and she started refusing to eat," Flory said.
Maehlee went to the doctor, who suggested the baby had colic or acid reflux, in which stomach acid backs up, burning the child's esophagus, the pipe leading from the throat to the stomach.
It wasn't colic, and three prescriptions for acid reflux failed to help.
At one point, the frustrated mother took her to the doctor.
"I told them I didn't know what to do," Flory said. " 'She hasn't eaten for 15 hours. You feed her.' "
The doctor suggested
An endoscopy was done on Maehlee in which a camera mounted on a thin tube was inserted in the baby's throat. Doctors said it revealed the baby had white patches in her throat, and a biopsy showed she had high levels of white blood cells.
The doctors said Maehlee had eosinophilic esophagitis (EOE), a digestive disorder.
"The white blood cells are wired wrong, and when children with this condition eat food, the white blood cells come in to fight off the food because they think the food is a foreign invader," Flory said, according to her understanding of it.
Put another way, EOE is an inflammatory condition in which the wall of the esophagus becomes filled with large numbers of eosinophils, a type of white blood cell, according to medicinenet.com.
Doctors told Flory and
The medical food, a powder, is mixed with water, then the baby drinks it.
For a while, Maehlee had to consume the Elecare through a feeding tube that ran into her nose and down into her stomach. Sometimes the tube would come out, and the parents would have to replace it.
One would hold her down while the other inserted the tube.
For her father, replacing the feeding tube is the most wrenching part of Maehlee's illness.
"It's torture, basically,"
"That is traumatizing for all of us," Flory said. "We still hate to do it. We all cry every time we do it."
After several weeks, Maehlee began drinking the medical food from a bottle.
Now Maehlee is undergoing a series of food trials, meaning she tries one food at a time to see whether that food spurs the disorder. In the first trial, she ate white potatoes, apples and bananas. The parents are waiting for results of the latest endoscopy exam of Maehlee.
Right now, Maehlee consumes the medical food through the feeding tube every three hours and can sleep through the night.
On a visit to Flory's work place, Maehlee walked around a hallway, waving and smiling to her mother's co-workers. The feeding tube taped to her cheek is the only giveaway she has the disorder.
When trial food disagrees with her, the results are obvious.
"That means she doesn't sleep, she vomits, she has diarrhea, and she cries all the time," Flory said. "She's just miserable."
"The goal is to be able to get enough food that she safely can eat and to not have to have medical food," Flory said.
So far, the only food she can eat is squash.
In her research, Flory has found about 40 people in
It is a mixed bag what they can eat. One child in
Maehlee and her parents live in
Taste wise, the medical food isn't a treat.
"It tastes like cardboard," Flory said. "It's the most disgusting stuff I've ever tasted."
For Maehlee, a health insurance company has paid for her doctor's appointments, a hospital admission and endoscopy exams.
But it doesn't pay the
"They don't cover the medical food that is medically necessary," Flory said.
Dealing with the disorder is a struggle.
"She wants to eat what we're eating," Flory said. "We have to hide it from her, which is not very fair. With all the appointments, it's a struggle to keep her feeling good every day and to keep up with all our everyday business."
Copyright: | (c) 2014 ProQuest Information and Learning Company; All Rights Reserved. |
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