Sunday, May 20, 2018
Health

St. Petersburg teen seeks answers over rare gastroparesis

ST. PETERSBURG

The stomach distress started more than a year ago, during summer vacation. Payton Foster, then 15, ate breakfast and then felt nauseous. Probably something she ate, her mother thought.

But the nausea persisted. At first, it was just in the mornings. Then it kept going all day. Then she began vomiting after every snack or meal.

"We knew something was definitely wrong," said Joyce Foster, Payton's mother, who is a teacher. "But we had no idea what it was."

Worried, the Fosters took their daughter to three specialists who ordered a battery of tests but found nothing.

Two of them insinuated that Payton, a petite girl who is captain of the Osceola High School dance squad, might have an eating disorder like bulimia. But Payton and her parents knew that wasn't the case.

Finally, they went to the doctor who knows Payton best, her longtime pediatrician. She had a hunch, and sent Payton and her parents to Gainesville.

By January, doctors at Shands Hospital at the University of Florida confirmed that hunch.

Payton was diagnosed with gastroparesis, thought to be caused by damage to a nerve controlling stomach muscles, rendering the muscles unable to move food through the digestive tract normally. It's thought to be rare, with perhaps 5 million people affected in the United States. That's only an estimate since, as the Fosters discovered, it's frequently misdiagnosed.

Most sufferers, like Payton, have no known cause. But the condition is associated with diabetes, which can cause nerve damage. As diabetes continues to rise, so may gastroparesis.

Most sufferers have unrelenting nausea and vomiting, and as a result, low energy and malnutrition. Some also have stomach pain and bloating.

"Patients will try anything and everything for relief," said Dr. Kfir Ben-David, an assistant professor of surgery at the University of Florida College of Medicine. "It's an ongoing condition. The symptoms are nonstop and affect every facet of their lives."

Gastroparesis can occur at any age and strikes more women than men.

Besides diabetes, other contributors include lupus, Parkinson's disease and multiple sclerosis; eating disorders; abdominal or intestinal surgery; medications that slow digestion; and possibly smoking.

But for patients who have none of these risk factors, like Payton, "we think it may be associated with a virus, something like a stomach flu which they never got over, but we just aren't sure," said Ben-David, who is not directly involved in Payton's care. "We also think there may be some hormonal link because it affects more women than men and the symptoms tend to worsen during the menstrual cycle."

Treatment may start with medications that relieve nausea, vomiting and reflux. Dietary changes such as eating several small meals throughout the day and avoiding foods that are difficult to digest due to fiber and fat content may also help. Less often, doctors prescribe medications with potentially serious side effects that help food move out of the stomach.

Even with medication, Payton's nausea and vomiting became so bad that the already slender teen lost 20 pounds. Her hair fell out in clumps because of malnutrition and dehydration. In June, doctors gave her a feeding tube that she connects most nights.

"Before the tube, I was sleeping 20 hours a day because I had no energy. I went almost a whole year without good nutrition," said Payton, who now is 16.

But constant nausea persists and she craves solid food.

"My favorite foods were Mexican and Thai. I try to eat sometimes, but I usually end up throwing it back up."

Earlier this year, Payton had an Enterra gastric neurostimulator surgically implanted in her abdomen. It sends mild electrical pulses to her stomach muscles intended to reduce nausea and vomiting. It worked well at first, then the benefit faded.

"We are going back to the doctor in October to have it repositioned and the electrical current adjusted to see if that helps," said Payton's father, Rex, a retired Maryland police officer. "We pray the doctors can figure out how to make it work."

A stomach stimulator can be used only when standard medication and dietary changes don't work.

"We see improvement in about 80 percent of patients," said Dr. Vic Velanovich, a professor and director of general surgery at USF Health who places 10 to 20 of the devices each year.

After surgery, the strength of the electrical pulses may have to be adjusted and the device and its leads may have to be repositioned on the stomach. Velanovich estimates that 60 to 70 percent of his stimulator patients return to normal eating.

Payton still goes to school most days of the week, earns A's and B's in all her classes and has remained active as captain of the school's dance team.

"I'm better than I was," said Payton, a junior at Osceola High, "but nowhere near where I want to be."

Contact Irene Maher at [email protected]

 
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