All posts by Mary Jo Strobel

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)

A life restricted

In the News, Uncategorized

Sarah Curtiss can’t eat corn. She can’t eat broccoli, cantaloupe or pretty much any form of dairy. Seafood is out. Lemons, tomatoes, squash, mustard and barley are all bad. And if a restaurant puts wheat or soy fillers in its burgers and hot dogs, she can’t eat those either.

Sarah, a 29-year-old graduate student in human development, has eosinophilic esophagitis, or EE, a long name for an elusive autoimmune disorder where heartburn and difficulty swallowing are linked to specific dietary allergens found in so many of her forbidden foods.

The allergies from EE are so vast that some may never realize they have the disease. Sarah’s diet focuses on whole foods — mostly fruits and vegetables with lean meats for protein — and resembles dietary recommendations for all Americans, not just those with EE. What Sarah originally thought would alter her life has actually in many ways enhanced it.

When Sarah would eat any of her forbidden foods, her white blood cells would overproduce and leach ridges of scar tissue inside her esophagus, causing structural damage that kept her
from swallowing.

She had tubes shoved down her throat, saw photos of her insides; her esophagus like a fluffy cake donut. She was referred to Cincinnati Children’s Center for Eosinophilic Disorders and matched with both an allergist and a gastroenterologist. During all this, Sarah graduated with a bachelor’s in psychology, married her long-time friend Caleb, bought a house, started graduate school and went about a seemingly normal life in Champaign.

She made trips back and forth to the center, going through the painstaking process of identifying every food she needed to stop eating for her esophagus to stop swelling. It would take three years to pinpoint every allergen. In the meantime, meals would mean a lot of guesswork. What would make her esophagus swell? Would she even know if it did? She hadn’t felt the initial damage. Indeed, one false ingredient wasn’t going to cause her throat to close up instantly. But too many allergens absorbed over too long would push her body too far.

And Sarah’s allergies don’t stop at food. Her wedding band and engagement ring, a modest round-cut diamond surrounded by white gold, has been specially treated so she doesn’t break out in hives. A dust mite-resistant liner is on her mattress and all her bedroom pillows. When she was a child, she had a bad reaction to penicillin — another allergy. And if she gets too close to her cat, Buffy the Mouse Slayer, she has a sneezing fit. Buffy and her dog Bubba both came from the Champaign County Humane Society, and they’re not going back. Sarah says she’s too stubborn to give either of them up. They are part of her family, and family is special to Sarah. When Sarah and Caleb are ready for children, their family may include more cases of EE.

“In many ways, I’d be prepared if we had a little guy with dietary issues,” Sarah says. “There is prenatal testing — it is genetic.”

Sarah and Caleb know the child could have extreme food allergies. They would recognize the signs a lot sooner than parents who didn’t have firsthand experience living with eosinophilic esophagitis. The question of how likely it would be that their little guy would not be able to accept milk is not stopping them when it comes to thinking about having children.

Like many students, Sarah’s work can be all-encompassing. Some nights, she is so exhausted she has no energy to cook.

When she first started her allergen-free diet in January 2012, Sarah would sometimes be overwhelmed by the amount of preparation needed just to make dinner. She found herself fed up, snacking on a bag of carrots; her brain too fried, her body would be too exhausted to orchestrate a meal. But those nights are few and far between now that she has time to plan meals.

She scours MarthaStewart.com and The Food Network and reads old cookbooks looking for inspiration. When she does find something that sparks her interest, she runs through the list of ingredients, sometimes literally taking her index finger through the page or hovering over the computer screen, making sure she doesn’t skip over any ingredients she may later have to substitute.

Corn is the hardest thing to avoid, since it’s in everything. Corn is a flavor in fruit juices, corn oil cooks french fries, and corn is often used as a filler in artificial sweeteners, vitamin supplements and even some mouthwashes. Corn metaphorically, geographically and literally surrounds Sarah.

Two crows are inked across her back, swarming around a cornstalk on her right shoulder blade. Apparently the crows can swallow corn, even if she can’t. Modeled after painter John James Audubon’s “Crows On Corn,” corn was something Sarah knew she could commit to on her back, if not in her stomach. A single gray-blue wingtip of the tattoo peaks out from the back of her sweater’s crew neck as Sarah’s cart squeaks and veers slightly to the side — she is in the produce section of a local grocery store and the front wheel is stuck. But Sarah doesn’t notice because she is on a mission: Do they have parsnips? She likes parsnips as a hearty filler for beef stew, and they’re fairly inexpensive. But most importantly, she’s not allergic to them.

Sarah has spotted a store worker and is inquiring on the whereabouts of any parsnips. The worker checks, but the store is out.

Sarah sighs.

“When you can’t have so much — like, I can’t have a lot of the really common green vegetables — eating the same things over and over again can get boring.”

Fluorescent walls of temptation and torture glare at Sarah as she strolls down the frozen dairy aisle.

She is diligent. She is strong. But her eyes wander. She is stopping. Abandoning her cart, Sarah bends down to inspect the label on a box.

“Oh, are these Fudgesicles? And they’re made with coconut milk — this is so exciting!”

She tosses the eight-pack into her cart and flees the scene. A week later she will discover that the thrill of the kill wasn’t quite worth the purchase of another box. She prefers coconut in macaroons instead of Fudgesicles.

Growing up, Sarah ate regular ice cream. She didn’t have to think about allergies. She played with cats and dogs, slept on beds without special liners and ate whatever her father put on the table. Every Christmas, there would be Belgian waffles for breakfast and spaghetti for dinner. Her sisters both grew up with asthma, so Sarah did learn about managing serious health conditions. And although it has been five years of living with it, she sometimes still forgets about her extreme allergies.

“I’ve made stupid mistakes even recently, like ordering lemonade at a restaurant,” she says, “I just wanted something other than water to drink and got so caught up in the fact that it was homemade without any fillers or artificial flavors that I forgot: ‘I can’t have lemons!'”

Doctors still don’t know everything about EE. Treatments may change, but there is no cure. There are alternatives to Sarah’s diet. She could take steroids twice a day for the rest of her life. But uncertainty of any side effects, coupled with the monetary cost, keeps Sarah set on her diet. Sarah is resilient, but she is also human.

This year means a huge change for Sarah’s family — no more Belgian waffles on Christmas morning, and they will have ham instead of spaghetti that night for dinner. She is surrounded by a supportive family: parents who are willing to change tradition, a husband who doesn’t mind eating in much more than dining out. Her friends bring their own bread to her home for dinner parties. But most of the discovery, stress and responsibility of living with eosinophilic esophagitis falls on Sarah. She has to think about what’s safe to eat for the rest of her life, maybe even for the lives in her future family.

“I guess I’m optimistic, but I never really saw it that way,” Sarah shrugs, smiling with a slight laugh. “I’m not going to get offended if you eat cake in front of me.”

Sarah can’t have cake. But that’s okay — she’s having coconut macaroons for dessert.

– Renee Wunderlich (source: dailyillini.com)

N.Y. student attends class remotely via robot

Education, In the News

WEST SENECA, N.Y. In an elementary school hallway, a teacher takes her second-graders to the library, leading a single-file line of giggling boys and girls that’s perfectly ordinary until you get to a sleek white robot with a video screen showing the face of a smiling, chubby-cheeked boy.

Devon Carrow’s life-threatening allergies don’t allow him to go to school. But the 4-foot-tall robot with a wireless video hookup gives him the school experience remotely, allowing him to participate in class, stroll through the hallways, hang out at recess and even take to the auditorium stage when there’s a show.

What’s most remarkable is how unremarkable this gee-whiz technology is viewed by his classmates. In a class of 7-year-olds raised on video games, avatars and remote-controlled toys, they don’t see a robot. They just see Devon.

Just before class one recent day, a girl leaned toward the robot to tell Devon the joke making the rounds at Winchester Elementary School: Why did the boy eat his homework? The teacher told him it was a piece of cake.

That Devon isn’t actually there is barely acknowledged. While making get-well cards for him during a hospital stay last year, his classmates all drew him as a boy, not a bot.

“In the classroom, the kids are like, ‘Devon, come over, we’re doing Legos. Show us your Legos,'” says teacher Dawn Voelker.

“I wondered how the little kids would take to him, thinking they’d be amazed,” adds Principal Kathleen Brachmann. “But I think kids are so tech-savvy now that they accept it more than we do.”

Even Devon doesn’t quite get what all the fuss is about. Steering the four-wheeled robot through school and spinning around to see the classmates is just another mouse-and-keyboard challenge.

“It’s so cool because it’s like playing a game on the computer,” says the boy with a mop of curly brown hair who always seems to be smiling. “It’s like your objective is to just survive.”

For a year now, Devon has attended school using VGo, a robot shaped a little like a chess pawn and best known for its appearance in a Verizon television ad showing the kind of technology possible using the company’s wireless network.

Since it was introduced in 2011 by Nashua, N.H.-based VGo Communications, a handful of students across the country have used it, including in New Jersey, Wisconsin, Texas and Iowa.

It’s also attracting attention in the medical and business worlds, allowing doctors to consult with patients and workers to virtually pop into the office, even while traveling.

For Devon, it was a chance to go to school, albeit remotely, for the first time in his life. He has eosinophilic esophagitis, caused by an allergic white blood cell that grows in his stomach and esophagus. He’s also got anaphylactic shock syndrome, which causes life-threatening allergic reactions to triggers including milk and peanuts.

Even though attacks have put him in the intensive care unit twice in the past 18 months, Devon is outgoing and energetic, a jokester whose personality better suits him to the school experience rather than home-schooling.

But after teachers at Devon’s previous school in the Buffalo suburb of West Seneca resisted the idea of having the VGo’s camera in the classroom, his mother persisted, and Devon was welcomed at the district’s Winchester Elementary.

It was added to Devon’s special education plan, and the cost — about $6,000 for the robot and $100 in monthly service fees — is being paid out of the district’s budget.

“We looked at it as a great opportunity,” Winchester Principal Brachmann says. “Where I think some people would have looked at what are the challenges, what are the problems, we never even had those conversations. It was just, how can we make this work?”

The technology broadens Devon’s school experience beyond what would be possible through a video chat. The only restrictions are physical.

The robot senses stairs and stops, but even they aren’t insurmountable because, at 18 pounds, the robot is light enough for a teacher to lift. Before moving forward, Devon scans the camera downward to make sure he won’t run into a classmate who might be crouching to tie a shoe. The VGo warns of large objects ahead.

“Walking down a hallway, seeing other kids,” Brachmann said. “You couldn’t expose somebody on a Skype session that way. It would just be like a TV screen. With this he really gets a feel, a sensation, of being there.”

On a recent weekday, Devon positioned himself in front of his home computer’s camera in a sunroom-turned-classroom in his Orchard Park home and dialed in to Mrs. Voelker’s room for the 9:10 a.m. start of school. He controls the VGo alongside teacher Sheri Voss, who comes to his house daily to help navigate and keep him on task.

When class was called to order, Devon stood at attention in front of his computer camera, holding a salute to his forehead as the class recited the Pledge of Allegiance.

“We don’t treat him any differently,” Voelker said. “He still has to turn in his homework. He still has to have his mother sign notebooks. He still has a job in this classroom — he’s the greeter.

“And he still has to pay attention — although there’s times I look and he’s off, the cat’s coming in the room.”

He’s heard through the VGo’s speakers. Voelker wears a microphone that amplifies the teacher’s voice, which helps all of the students, including Devon, hear her. Instead of raising his hand in class, Devon activates a light on the VGo.

“It’s really fun having him in the class,” said Caitlyn Bedient, a pixied brunette who sits a few desks away. “He has toys at home and we can show him the creations we make.”

Classmate Daisy Cook said it was a bit awkward at first when the technology would glitch, and it didn’t quite seem fair that Devon got to stay home and go to school.

“But now it’s kind of cool,” she said, her blue eyes widening, “because we can communicate together. It’s like he was never on the VGo.”

– Associated Press (source: cbsnews.com)