Rare digestive disorder blocks 13-month-old from eating food

Squash is only regular food Maehlee can eat; she also eats 'medical food'

Posted: May 18, 2014 - 4:03pm
Thirteen-month-old Maehlee Her and parents Marci Flory and Kao Her struggle with the toddler's digestive disorder that won't allow her to eat any food except an expensive special medical food and squash.  THAD ALLTON/THE CAPITAL-JOURNAL


Monday through Sunday

Digestive disorder facts:

-- 75 percent of people with the disorder are white males.

-- Disorder occurs in 1 in 10,000 people.

-- Cause of disorder unknown, but appears to be food allergies.

-- Disorder discovered relatively recently and much is unknown about it.

Source: gikids.org

Thirteen-month-old Maehlee Her found a doughnut crumb on her grandmother's floor on Thursday morning and plopped it in her mouth to munch.

Seconds later, she vomited.

For Maehlee, food isn't a friend.

Marci Flory knew within a week of Maehlee's birth in April 2013 that her infant was ill. Maehlee was vomiting nonstop and was screaming 24 hours a day, Flory said this week.

"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 Children's Mercy Hospital in Kansas City, Mo., might be able to help Maehlee.

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 Kao Her, her father, to take her off all food and to put her on Elecare, an amino acid-based medical food

The medical food, a powder, is mixed with water, then the baby drinks it.

For awhile, 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 wrenchingt part of Maehlee's illness.

"It's torture, basically," Kao Her said.

"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.

Meanwhile, her parents have become "closet eaters."

"We eat away from her," Flory said, because Maehlee wants to eat what they eat. Many celebrations — birthdays, family gatherings and holidays — are food-centered.

In her research, Flory has found about 40 people in Kansas who have the disorder. They are a mix of babies, teenagers and adults. Ten live in Topeka, one in Wichita, one in Derby and five in Lawrence.

It is a mixed bag what they can eat. One child in Lawrence has eight "safe foods" he can eat, a 16-month-old doesn't have any safe foods, and a 17-year-old girl in Osawatomie doesn't have any safe foods and can't even drink water without becoming ill. She gets two IVs a day.

Maehlee and her parents live in Eudora.

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 $600 to $900 a month for the medical food.

"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."

Follow Steve on Twitter @@TCJCourtsNCrime.

Comments ( 4 ) sign in or create a profile to comment
Gixxerider 05/18/14 - 06:09 pm
really sad

Ridiculous insurance won't cover her medically necessary food! CJ, is there a fund the family has set up for people to help them with some of their expenses?

ericwithk 05/19/14 - 12:34 am
Sarcasm of course...

Well we all know that insurance companies don't rake in much money at all, so it's not surprising they refuse to pay for medical food.

Borneoplasm 05/19/14 - 07:28 am
Very sad

Not surprised that insurance won't cover this. It is so rare, that someone merely did not include on their "list" of "approved" conditions. So, the decision to deny becomes automatic in the computer systems. All that is needed is for humans to get involved in the decision. and manually add it to the list. It also shows that private companies are no different than goverrnment agencies. They are all comprised of human who create lists and rules. It is extremely doubtful that some higher-up made a mercenary decision to leave this off the list. But I guess you never know. My heart goes out to the family.

traumaemt 05/19/14 - 12:24 pm
Ms. Flory and Mr. Her...

Just contact your U.S. and Kansas Senators and Congressmen and women about the fact that the company will not cover the food. I have done that before about insurance companies not covering medically necessary items, and they were approved after seeing that the doctor (or multiple doctors, in some cases) had wrote prescriptions for an item that they were denying coverage for. In the case of food for your daughter, being that it is the only thing that she can eat (for all intents and purposes), they should be required to cover it.

For me personally, I am still trying to get the State of Kansas to cover CPAP supplies with KanCare. You would think, that something that is potentially deadly like Sleep Apnea they would cover the supplies. But KanCare does not cover them. I have written Senator Hensley and Representative Lane , my 2 reps in congress, and have got no word back from them.

To make it worse, I have a particularly deadly form of Sleep Apnea, called Central Sleep Apnea. It is caused by, in my case, by Multiple Sclerosis. Basically, my body forgets to breathe. My "CPAP" machine is a special one that is actually considered a non-invasive ventilator. Whenever I stop breathing, it takes over my breathing for me.

I will keep praying for both of you and for little Maehlee, that a solution can be found soon for her needs.

Back to Top
Search Topeka jobs