Cyclic vomiting syndrome

Group sheds light on cyclic vomiting

By KAWANZA L. GRIFFIN

of the Journal Sentinel staff

Monday, November 26, 2001

Mollie Hanson began having violent vomiting spells at the age of 1 1/2.

The episodes, in which she'd throw up a dozen or more times in the course of two hours, increased in frequency as she grew older, much to the alarm of her parents.

"I would stand over her bed and just think 'Why can I not explain what it is in her body that makes her so ill?' " said her mother, Kathleen Adams, who is a nurse.

Doctors thought Hanson had a variant of migraine headaches, or even that she was just doing it to get attention.

But, at age 12, after numerous hospitalizations and missed school days, Hanson was diagnosed with cyclic vomiting syndrome, or CVS, finally giving her and Adams the comfort that she had a real medical condition.

"I just felt an enormous relief to finally get someone to recognize that something was really wrong," Adams said.

Adams is trying to bring that same relief to other parents of children with the condition. She's president and founder of the Elm Grove-based Cyclic Vomiting Syndrome Association.

What it is

Cyclic vomiting syndrome is a rare disorder that causes people to have recurrent episodes of severe vomiting and nausea without an apparent cause. Although it typically surfaces between ages 3 to 7, it can occur earlier but usually begins to diminish during adolescence.

Though it was first identified by an English physician more than a century ago, doctors still know frustratingly little about it. Some doubt that it exists as a distinct syndrome.

Some doctors think it is an unusual type of migraine, even though many patients don't have headaches. 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 David Fleisher, a pediatric gastroenterologist at the University of Missouri and a pioneer in treating cyclic vomiting syndrome.

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

"Everybody looked at me blankly," Martin said.

He said the symptoms describe what many call "variant migraine," and he said he is skeptical that cyclic vomiting is a separate and distinct syndrome.

How it's treated

Treatment for the condition is generally supportive, providing a quiet place to sleep, but may include hospitalization and intravenous fluid to avoid dehydration. Ondansetron, an anti-nausea drug used in cancer chemotherapy; propranolol, a beta blocker used for migraines; and strong sedatives are also given.

Hanson stopped having episodes about two years ago and, like many others, started having migraine headaches instead. She is currently on two anti-migraine medications to help ease her pain.

Today, she would much rather talk about her friends or computers than the illness she's had all her life.

Just thinking about the "V" word brings back painful memories, she says.

"There are so many horror stories out there about the ways we've been treated by doctors," Adams said. "We're definitely not doctor- bashing, but just frustrated over not being given accurate information."

Adams founded the Cyclic Vomiting Association in 1993. She said 12 of 18 known families attended the first meeting that year. The current membership, which includes only financially active families, has grown to about 1,000.

She also said that more doctors are starting to conduct research on the cause of the disorder because about 25% of the children, like Hanson, have some type of developmental disorder, suggesting a possible genetic component.

B.U.K. Li, a physician at Chicago's Children's Memorial Hospital in Chicago, opened the world's only program dedicated to treating and researching cyclic vomiting syndrome a year ago. He says that he has seen 100 patients from 22 states and five countries.

"It's clearly not a rare disorder," he said. "It's really one of the mysterious black boxes of pediatrics."

He is currently researching a possible flaw in the stress- response system that could explain why people under stress develop stomach complaints such as "butterflies," and why some vomit and can't eat when they have an infection.

For Adams, the increasing interest about the disorder from doctors makes her happy and relieved that many families might not have to go through years of misdiagnosis before they get relief for their children or themselves.

"It doesn't take a long time to learn how to treat it well," she said. "You just need a good physician to meet you at the hospital."

For more information, go to the Web site at www.cvsaonline.org

The Associated Press contributed to this report.

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