Pacemaker May Allow Teen With Paralyzed Stomach to Eat Again

PHOTO Gentrie Hansen, front, has been fed through an IV for seven months.

Gentrie Hansen hasn't had a bite of food since Christmas, diagnosed with gastroparesis, a rare disorder that has paralyzed her stomach.

For months, the 14-year-old Draper, Utah, girl, who was once an active dancer and cheerleader, has received her nutrition through an IV tube.

Gentrie still relishes food and often chews on microwaveable turnovers, but she must spit it out because her stomach cannot digest anything. As a result, her weight has dropped to 88 pounds from 112.

Family members are so worried about upsetting the teen with tantalizing cooking smells that they post a "closed" sign on the kitchen door and secretively eat cold sandwiches behind closed doors.

"She is still hungry," said Gentrie's aunt, Val Cutrer. "Food doesn't go through her stomach, but she still has hunger pains and food smells wonderful to her. She says it's like torture. She wants to eat and everything smells good, but every time she eats something it's instant, she's throwing up."

Gentrie has been hospitalized eight times in the past seven months and has met with six pediatric gastrointerologists. Now, tired and thin and nearly ready to give up, she has turned to doctors at " target="external">Nationwide Children's Hospital , in Columbus, Ohio.

Doctors Tuesday surgically inserted a temporary http://www.medtronic.com/your-health/gastroparesis/device/index.htm" target="external">gastric pacemaker in Gentrie's stomach. If she responds positively within a few days, the teen will get a permanent device that could allow her to enjoy food again.

"In her little mind, she is sure she is going to be fine," said Cutrer, 53 and a mother of five. "Those of us with experience are cautiously optimistic and hoping and praying this works for her."

The device works like a pacemaker in the heart, shocking it back to normal.

So far, Gentrie is doing well, according to her surgeon, Dr. Steven Teich

. "She's awake and progressing fine," he said.

Teich put two leads into her stomach and hooked them to a temporary external pacemaker to see if Gentrie gets better.

"The pacemaker directly stimulates the muscle and the nerves that are not firing," he said. "Once it starts, it can go through the muscles and work all the way down."

Nationwide is the only hospital in the country with specialists in gastroparesis and where this somewhat experimental surgery is performed on children.

Teich has done five permanent surgeries since last fall and two temporary ones that will be permanent. All are now able to eat real food, although in more frequent and smaller amounts.

Five more surgeries are scheduled through August.

If Gentrie's surgery is successful, she will have her pacemaker replaced every five years when the battery runs out.

Pacemaker Sends Impulse to Stomach

"It gives an electrical impulse to the stomach, which can spread out like how a pacemaker works in the heart," Teich said. "It starts an electrical wave that goes down the stomach. That's what she is missing. The way the stomach works is complicated and it helps to push things through."

The Food and Drug Administration approved use of gastric pacemakers in adult patients with gastroparesis in 1997. But because few studies exist on those younger than 18, its use is still "humanitarian" on children, Teich said.

"When it works, it works great," he said. "But this is a therapy, not a cure. It's not like getting your appendix out and you're fine. ... The goal is to get them off intravenous feeding and get them a normal life. They still may be nauseated a few times a week or throw up a couple of times, but we always see improvement in symptoms."

Ordinarily, strong muscular contractions propel food through the body's digestive tract, but in gastroparesis, the wall muscles work poorly or not at all. Some doctors suspect that the vagus nerve, which helps manage the digestive tract, has been damaged, causing food to remain in the stomach longer.

Early symptoms include stomach distention, nausea and vomiting, a feeling of fullness and unintentional weight loss.

The nerves in the stomach are like a "second brain," according to Dr. Lee M. Kaplan,, a gastroenterologist and director of the Weight Center at Massachusetts General Hospital in Boston.

"The nervous system in the gut is larger than any other part of the body except the brain itself.

"If you think about the gut, it has to propel food along in an organized way," he said. "Imagine you have a tube of toothpaste and have to start at the bottom and push to the top."

The disorder, which is rarer than leukemia in children younger than 18, interferes with digestion, causing nausea and vomiting and wreaking havoc with blood sugar levels and nutrition.

About 35 million Americans have gastrointestinal motility disorders, including gastropaesis, irritable bowel syndrome and gastroesophageal reflux disease. As many as 8 million people of all ages are hospitalized each year, according to the Centers for Disease Control and Prevention.

Complications can include weight loss and malnutrition, overgrowth of bacteria in the stomach and blood sugar fluctuations. Undigested food can also harden into a solid mass called a bezoar, which causes nausea and vomiting and can be life-threatening.

In adults, gastroparesis is most commonly associated with diabetes or a disease such as Parkinson's, but in children, the cause is usually a virus, according to Dr. Carlo Di Lorenzo, Gentrie's pediatric gastroenterologist at Nationwide.

"Like getting a virus and the stomach doesn't work for a few days, in some cases the infection lasts much longer," he said. "Something affects the nerves of the stomach that provide the message how to contract.

"If things don't move well, the stomach doesn't break down well and it takes forever for the food to leave the stomach. The longer food is in the stomach, it eventually comes out the wrong end."

Sometimes, the condition gets better over time. When it doesn't doctors turn to dietary changes; small feedings with less fat and fiber, medication and even botox injections.

"Most definitely a pacemaker is a last resort," Di Lorenzo said.

So far, Gentrie has been receiving nutrients through a peripherally inserted central catheter in the veins. She still throws up several times a day and has to drain the bile-like substances from her stomach.

The danger of prolonged use of the catheter is infection, which can sometimes be fatal.

It took five months to diagnose Gentrie's condition because her doctors at first suspected anorexia or bulimia, and even her insurance company initially gave her parents the run-around.

Kathy and Lowell Hansen were initially unsure of how they would pick up the estimated $300,000 cost of their daughter's surgery. She is an executive with a speed-reading company and he runs an electrical company.

But, now, Select Health spokesman Spencer Sutherland said, "We are happy to cover it and hope it works."

Gastroparesis: Vomiting Up Every Meal

Gentrie's ordeal began in December 2009 when she began vomiting up every meal she ate. Her diagnosis was delayed for five months because of the anorexic or bulimic suspicions.

One test, that put food in the stomach, bypassing the mouth, cost $40,000.

"The community has really rallied behind the family," said Doug Robinson, a neighbor of the Hansen's who wrote a column for the Deseret News that helped raise awareness for her plight.

He described Gentrie as "girlhood personified."

"Happy. Friendly. Active. Pretty. Personable," he wrote. "When we pulled into the driveway or walked to the mailbox, she liked to shout out a greeting and conduct interviews across the street: How are you guys? What are you doing? Where are you going? This was between cartwheels in the grass."

When he family had to raise $100,000 to pay upfront for the pacemaker and had no commitment from the insurance company, they turned to the community for help.

One fundraiser alone raised $18,000, according to Robinson. A local Burger King donated half a day's proceeds to the family, as did a couple of car washes.

Gentrie hasn't attended school since December and because she is constantly nauseated, home schooling with a tutor doesn't work out.

"Sometimes, I want to be done with it," she told Robinson. "I just want to say, 'I give up.'?"

At one point she told her parents, "I just want to go live with Grandpa [who died]. It's too hard here. I can't go to school. I can't be with friends. I don't really have a life."

But the hardest part is being around food and not being able to eat, especially with three hungry brothers and an older sister. The boys -- one a 6-foot-6, 305-pound offensive lineman for Brigham Young University -- had a "code word" for when they wanted to eat, according to Robinson.

"They'd say let's go play ping pong, and she would know they were going to eat and cry," he said.

The entire family went on a trip in March to California and tried to shield Gentrie from the food that is "such a part of life," aunt Cutrer said.

"Some of us would sit down to eat and the rest of us would take Gentrie walking," she said. "At family get-togethers and barbecues, we take her out back where she doesn't have to come in the kitchen with the food and smells."

Gentrie has met several other girls online who have the same condition and they consult each other for comfort.

Meanwhile, her family is thrilled with the good care Gentrie has received at Nationwide, Cutrer said.

Gentrie was hoping to be on solid food straight away, but is still on liquids, or the sugarless gum she has been allowed to chew for the past seven months.

"Earlier in the week, Gentrie had it in her mind that by Wednesday she would be eating, but when surgery got [rescheduled], she was devastated," Cutrer said. "We all laugh that she is going to get hospital food. She was making a wish that she would go on an eating tour of the United States."

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