Girls fight for acceptance of feeding tubes

SPARTANBURG, S.C. — At dinner time, Michaela Shelley doesn’t fill a plate with meats and vegetables. Instead, the 14-year-old grabs a white, milky substance from the kitchen counter.

“I wish I could eat everything everyone else eats,” Michaela said.

But with her food allergies, she can’t.

A food allergy is an abnormal immune response to a certain food that the body reacts to as harmful, according to the Centers for Disease Control and Prevention. An estimated 4 percent to 6 percent of U.S. children under age 18 have food allergies. However, Michaela’s allergies are so severe that the only foods she can eat safely without a reaction are bananas and lemons.

So for her meal, each day, she has to eat an elemental formula — consisting of broken down amino acids. She needs 1.5 to 2 liters of the formula each day to receive the nutrients needed to survive.

But when she first got put on the formula a few months ago, she realized she wouldn’t be able to drink it.

“It tastes like dirt,” she said.

She decided her only option was to get a feeding tube surgically attached to her stomach.

“At least with the feeding tube, I don’t have to taste it,” she added.

According to the Feeding Tube Awareness Foundation, about 345,000 people in the U.S. currently rely on feeding tubes to survive.

Dr. Jonathan Markowitz, Michaela’s doctor and Pediatric Gastroenterologist at Greenville Hospital System’s Children Hospital, said feeding tube use is increasingly common among those with very significant food allergies because the formula they have to eat is “unpalatable.”

He said severe allergic diseases tend to affect 10 people per 100,000 with recent estimates even higher. But in the Upstate, it tends to be a little more prevalent.

“I don’t know why it’s more prevalent, but (the Upstate) is known for having increased allergies in general,” Markowitz said.

Michaela initially had a feeding tube attached to her face. It threaded through one nostril, down the back of the throat, into the esophagus and into the stomach.

On Feb. 4, Michaela got a gastrostomy or gastric tube surgically implanted in her stomach, which she says is a lot more comfortable and less noticeable.

Across the living room from where Michaela sat on a recent Tuesday, her friend Merce’des Lancaster said comparing dirt to the formula was inaccurate.

“Dirt actually tastes better than the formula,” she said with a laugh. “You can at least swallow dirt.”

Merce’des has a lot in common with Michaela. She’s 14. She also can only eat specific formula. She too uses a feeding tube.

The two met shortly after Michaela and her family moved to Spartanburg about two years ago.

Amy Shelley, Michaela’s mother, turned to Facebook and other social media sites to try and find others in the community who use feeding tubes.

“There’s a couple of us in the community, and we are getting to know more and more. And Facebook has been a huge help,” Annie Shelley said.

But unlike Michaela, Merce’des uses her tube because of a severe food allergy called Eosinophilic Esophagitis, or EOE. A type of white blood cell (eosinophil) builds up in the esophagus as a reaction to foods, allergens or acid reflux. As a result, the eosinophils can inflame or injure the esophageal tissue, according to the Mayo Clinic.

Eosinophilic Esophagitis disease, while rare, is increasing in prevalence. It affects an estimated 1 out of every 2,000 children, according to the American Partnership for Eosophilic Disorders.

The only safe food Merce’des can eat right now is rice and some candies, such as dum-dum suckers.

Markowitz said the reason she can handle candies and not vegetables or fruits is because candies lack proteins.

“Food allergies are to proteins,” the doctor said. “Simple carbohydrates that are highly refined, like sucrose, do not have any protein in them, so they are tolerated by people with allergies.”

The feeding tubes, the girls say, are often misunderstood and can be difficult to deal with.

And, the challenges extend beyond the kitchen or a restaurant and what they can and can’t eat.

When Merce’des got her feeding tube in November 2011, she says attending public school became a challenge.

“There were some people who thought I was using the tube to lose weight,” she said. “They would ask me ‘Why are you losing weight?’ Some people actually physically pushed me around because they didn’t like it.”

She said she was always alone in the halls.

Now, Merce’des goes to public school via online classes. She’s glad she found a friend like Michaela, who understands what she’s going through.

They even have several classes together online.

“It’s nice to have someone not look at you like you’re crazy,” Merce’des said.

A few weeks ago, while Merce’des and Michaela were studying for school, they decided to help others understand feeding tubes. They say they are tired of getting stares and strange looks when out in public.

This week is feeding tube awareness week, and the two friends decided it was a good time to record a video with a strong message.

In the video, which currently has over 700 views on Youtube, the girls take turns holding up information about their conditions and the feeding tubes.

“We want to show the world that feeding tubes aren’t scary,” Michaela said. “We can do anything the rest of the world can do.”

Despite the unusual way these two girls eat, and despite spending a lot of time in doctor’s offices and hospitals, they live normal lives.

“The feeding tubes don’t interfere with activities, you can bathe, swim,” said Dr. Markowitz. “You wouldn’t even know they have them unless they” show you.

Outside, on a nice, warm Tuesday, Michaela skated around her driveway on a ripstick — a type of skateboard. She enjoys playing soccer and stays active in her church youth group. Merce’des said she enjoys volunteering at the Humane Society on weekends and spending time on the internet. She too stays active in her church.

“Our illness doesn’t define us. Our strength and courage does” Michaela said. “We are just normal teenagers.”

The feeding tubes, she adds, save their lives.

Michelle Lancaster, Merce’des mother, said she is so proud of the girls for being so brave and being so willing to raise awareness about feeding tubes.

“These girls can make a big impact on the world,” Lancaster said. “Michaela could really do a lot for the severe allergy community, and Merce’des could do a lot for the EOE community. They are good role models.”

Markowitz said the goal is to one day get the girls off the feeding tubes.

“Once we get their symptoms and diseases under control using the formula, we go through a process of food introduction,” he said. “As we go through that process, we usually find out if they will be able to eat enough foods to sustain nutrition. If not, then they do end up stuck with the tubes without an end point.”

Markowitz said a good percentage of the kids on feeding tubes are able to come off of them, but not everybody.

– Dustin Wyatt (source: mdjonline.com)