All posts by Mary Jo Strobel

Explaining Eosinophilic Esophagitis

In the News, Uncategorized

Seven-year-old Devon suffers from a wide array of severe allergies, including a condition called eosinophilic esophagitis, where an inflammatory, allergic reaction causes the airway to swell and impairs breathing. Devon’s severe allergies actually prevent him from attending school, physically, but with the help of VGo robotic technology, Devon is able to visually trek the halls of his school and learn beside his classmates. See how the VGo robot has changed Devon’s life, from both an educational and social perspective.

Click here to watch the video

– The Doctors (source: thedoctorstv.com)

Severe food allergies challenge teens

In the News, Uncategorized

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 federal Centers for Disease Control and Prevention. An estimated 4 percent to 6 percent of U.S. children younger than 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 11⁄2 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 said.

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.”

———

About 345,000 people in the United States rely on feeding tubes, the Feeding Tube Awareness Foundation said.

Feeding tube use is increasingly common among those with very significant food allergies because the formula they have to eat is unpalatable, said Dr. Jonathan Markowitz, Michaela’s doctor and a pediatric gastroenterologist at Children Hospital in Greenville, S.C. Severe allergic diseases tend to affect 10 people per 100,000, he said; recent estimates put the number even higher.

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.

But on Feb. 4, she had a gastrostomy, an operation to implant a gastric tube in her stomach, which she said is far more comfortable and less noticeable.

Merce’des has a lot in common with Michaela. She also is 14, only can eat specific formula and 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.

Unlike Michaela, Merce’des uses her tube because of a severe food allergy called eosinophilic esophagitis, or EOE. Eeosinophils, a type of white blood cell, build up in the esophagus as a reaction to foods, allergens or acid reflux. 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.

Earlier this year, while Merce’des and Michaela were studying for school, they decided to help others understand feeding tubes. For Feeding Tube Awareness Week, which ran from Feb. 10 to 16, the two friends decided to record a video with a strong message. In the video, 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.”

– Dustin Wyatt (source: rockymounttelegram.com)

Food Allergies could stunt growth

Education, In the News

He bounces around the room like any typical 3-year-old full of energy. If it weren’t for his severe food allergies and eosinophilic esophagitis (EoE), an auto-immune disorder, he would seem like just another kid on a temporary sugar rush.

Yet sugar is one of the things Jackson Witte, son of Joel and Laura Witte of Peru, rarely gets to enjoy in typical kid-friendly foods.

His mother said she first noticed something was wrong when he would scream and cry as an infant. It wasn’t until he was old enough for solid foods that he started showing symptoms of food allergies.

“He’s had food allergies since his first bite,” she said.

The symptoms got worse and the Witte’s pulled the foods that were causing allergic reactions. That’s when Jackson’s height and weight plummeted on the child development charts.
Eventually, they saw a gastroenterologist and were able to get the diagnosis of EoE.

“They are two separate things but the people that have his condition tend to have food allergies as well,” she said. “The kids that are diagnosed with his condition, they do allergy testing.”

The auto-immune condition causes inflammation and damage to the esophagus. Since Jackson’s body attacks most of the foods children normally eat, he does have a feeding tube. Laura said they usually mix up a special formula, Elecare, that has been stripped of the proteins that Jackson’s body can’t handle. The formula is $35 a can and Jackson uses one every other day. His growth and development has improved but he still is on the lower end of the growth indicators.

Jackson also eats one food every day for three months. At the end of the trial, he goes back to the hospital for another endoscopy and biopsy.

“He was diagnosed about two years ago so we’ve been doing this for about two years,” she said. “Right now he can eat oats and corn and that’s it. He’ll never be able to eat a boxed food, there’s just too many ingredients. Pretty much his diet right now consists of oat milk, oatmeal, he loves corn-on-the-cob and we can do corn chips.”

The food trials are difficult for the family since Jackson may show signs of allergy or intolerance, but later the biopsy proves the food is not causing a reaction. Other foods that Jackson may tolerate well, such as apples, don’t cause any problems until the results of the biopsy take that food off the approved list.

Jackson can have sugar so his mother will make a type of sugar cookie with oat flour, oil and sugar. It probably won’t win any baking awards, but it’s one of the few treats he can eat. He already knows what he can and can not eat. Laura said he will pretend to read labels, setting aside things for his older brother, Dylan, 12.

Since eating causes physical pain for Jackson, Laura said it was only recently that she realized his slow speech development was related to the auto-immune disorder. She said a speech therapist explained many of the same muscles and skills involved in chewing and swallowing food are the same ones for speech. Now that Jackson has found a few foods to eat along with a trial food, he also is gaining in speech.

He may not say much, but he already knows his way around video game systems, his mother’s cell phone and the family computer. Laura knows he’s a very bright boy based on how quickly he will learn things.

But he rarely articulates a lot of his skills, another symptom of his conditions.

EoE is an auto-immune disorder estimated to affect more than one in every 2,000 people, mostly males. There is no known cure and treatment often is painful as in Jackson’s case with the trial food followed by a surgical procedure to determine his tolerance.

A recent study at University of North Carolina found there is a link between child growth and development when multiple food allergies are present. René Ficek, a licensed and registered dietitian at Illinois Valley Community Hospital, Peru, said the study was a very small one that should not immediately cause concern for parents.

“There’s so much confusion,” Ficek said. “What we see is parents starting to restrict foods.”
Current recommendations are for parents to introduce foods known for allergies between the ages of 4-6 months and then pay attention to the child’s reaction. Food allergy testing also can result in false positives so parents need to keep a food diary if they suspect their child may have problems. The diary should include the types of foods, any other ingredients and the symptoms.

“The only cure for food allergy is food avoidance,” she said. “But if it’s a rash, just keep watching.”
The top food allergens are milk, eggs, peanuts, tree nuts, fish, shellfish, soy and wheat. If a food is causing an allergy, don’t just remove that food. She said it’s important for parents to talk with a registered or licensed dietitian about substitutes for those foods in order to maintain healthy growth.

“It is important to get that good healthy fat in the diet,” she said. “If you just take it out and don’t replace it that could affect growth.”
Carolyn Sullivan, a nurse practitioner specializing in pediatrics at Peru Primary Care Clinic, said concerned parents should first talk to their health care provider if they have concerns. If incomplete nutrition is suspected, they can get an analysis done.

“It’s usually an evaluation of a child’s diet history, medical history, growth and physical exam, and if the provider feels necessary, some laboratory tests,” she said. “The dietary history usually looks at the quantity, quality and variety of foods that a child’s eating. It helps keep track of their intake and looks at any special or restrictive dietary habits.”

Even if a child is on the lower end of the growth charts, she said most children eventually will catch up with proper nutrition.

– Tamara Abby (source: newstrib.com)

Girls fight for acceptance of feeding tubes

Advocacy, In the News

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)

Ridgefield Mom: Wear Jeans to Support ‘Global Genes’

In the News, Uncategorized

Cori Neustein is wearing jeans today.

That may not seem like news to you, but to her family, she’s showing support for her daughter, Erin, who was diagnosed with the rare disease Eosinophilic Esophagitis at age five.

She and her family donned denim today to participate in Rare Disease Day, sponsored by the Global Genes Project and the “Wear That You Care” campaign that encourages people to wear the Blue Denim Genes Ribbon and their favorite pair of jeans to recognize Rare Disease Day, today, Feb. 28.

“We hang our hopes on the research done in pursuit of a cure for her and others like her,” said Neustein, citing the nearly 7,000 rare diseases affecting nearly 30 million Americans.

Neustein explained that eosinophilic eosophagitis is a disorder that causes complications for individuals while eating, triggered by food proteins reacting in in the esophagus, much like an allergy. “The only way to diagnose and treat this is through endoscopies. Erin has had 20 since she was diagnosed,” said Neustein. Today, Erin can only eat four foods—turkey, grapes, carrots and cauliflower. “She most likely will never have birthday cake again—or a piece of [her future] wedding cake.

Still, the family—Cori, her husband Scott, Erin and her sister Maribeth—is hopeful for a cure.

“Hope: It’s in our genes,” Neustein said, repeating a tagline often heard during the campaign.

– Lisa Buchman (source patch.com)