Little understood ailment causes chronic vomiting

CHICAGO -- When Lauren Danforth started vicious vomiting spells -- every five to 10 minutes, 20 times daily for a week -- doctors suspected the flu, appendicitis, or anorexia. Some friends still figure the episodes that come every month or so are all in her head.

Brain scans, blood tests, X-rays and endoscopic peeks at her digestive system found nothing abnormal. When Dr. B U.K. Li finally put a name to her misery six months ago at Chicago's Children's Memorial Hospital, the diagnosis -- cyclic vomiting syndrome -- was both a godsend and a curse.

"I was happy he knew what it was. I was tired of people telling me I was crazy and it was nothing," Lauren said, lying pale, thin and listless in her hospital bed at Children's.

Trouble is, though it was first identified by an English physician more than a century ago, doctors still know frustratingly little about the disorder and some doubt that it exists as a distinct syndrome.

Some doctors think it is simply an unusual type of migraine, even though many patients don't have headaches. And many have never heard of it, mistakenly diagnosing ailments it mimics, including bulimia, flu and reflux disease.

"Too many patients go to the emergency room and get diagnosed with the flu for the seventh time in a year, and they're just miserable," said Dr. David Fleisher, a pediatric gastroenterologist at the University of Missouri and a pioneer in treating cyclic vomiting syndrome.

Dr. Jim Martin of San Antonio, president-elect of the American Academy of Family Physicians, said he had never heard of the disease by name -- and neither had many of his colleagues.

"Everybody looked at me blankly," Martin said.

Like clockwork

Lauren's symptoms, which started suddenly about a year ago, are typical. The episodes occur almost like clockwork, striking without warning every month or so and disappearing just as quickly. The nausea, stomach pains and constant retching have put her in the hospital nine times this year. When she's well, the 15-year-old from the Chicago suburb of Hanover Park looks perfectly normal.

Research, much of it developed within the past five years, suggests the disorder may be genetic and caused by some sort of neurologic malfunction or flawed stress-hormone activity.

"We still don't know if it's a brain or a gut disorder," Li says.

Since Children's opened the world's only program dedicated to treating and researching cyclic vomiting syndrome a year ago, Li, the program's director, has seen 100 patients from 22 states and five countries.

"It's clearly not a rare disorder," he said.

Starts in toddlers

The ailment usually starts in toddlers and young school-age children, both girls and boys. It often tapers off by adolescence, though about one-third of children go on to develop migraines. Fleisher said at least 20 percent of cases begin in adolescence or adulthood.

Until they better understand its causes, researchers won't be able to prevent the disorder or cure it.

That's not very comforting for patients like Lauren. Her eyes widen when Li tells her about other patients whose episodes last as little as a day or two.

"Are you kidding? I have mine for seven days!" she says.

"You're at the worst end," Li quietly tells the girl. And she slowly draws her knees up under the thin hospital blanket, fighting the wave of the next attack.