Cyclic vomiting syndrome a puzzling, debilitating neurological disorder

For many years, Justin O'Coonor, now 22, of Schenectady has had to deal with severe nausea and vomit

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SCHENECTADY — Whenever 4-year-old Justin O’Connor would go out to dinner with his parents, within minutes after he ate he would say his stomach hurt, and he would vomit in the parking lot.

“At first, it happened every couple of months,” said his mother, Barbara O’Connor, a senior personnel administrator for the Human Resources Department of the state Office for Children and Family Services. “We just thought he had a sensitive stomach like his father. So we didn’t think much of it.”

Over the years, it began to happen more, and by the time Justin was 12, he was having bouts of agonizing stomach pain and vomiting every few minutes for hours at a time every few weeks.

His mother would take him to a hospital emergency department, where he would be given a shot of morphine that would stop the vomiting for a time.

Finally, in June after 18 years of searching for an answer and more than 200 emergency room visits, Justin, now 22, learned he has cyclic vomiting syndrome, (CVS), a neurological disorder that causes people to experience cycles of severe nausea and vomiting that can last for hours or even days and alternates with periods of no symptoms.

No exact cause

“We don’t know the exact cause, but we think it’s a variant of migraine headaches,” said Dr. Cary Qualia, pediatric gastroenterologist at Albany Medical Center Hospital.

“What happens is that kids or adults have periods of up to three days where they are vomiting repeatedly,” said Qualia. “Then they are all right for a number of weeks or months. It’s different for every person. Then another bout happens. If you have more than three bouts in a year, you are classified as having this syndrome.”

O’Connor said Justin’s symptoms got so bad they were at the hospital every week.

“He’d be in severe pain, and he would vomit three or four times every half-hour,” said O’Connor, who spent hours online searching for an answer.

She finally sought help from the Cyclic Vomiting Syndrome Association in Milwaukee, Wis., who referred her to Dr. David Fleisher, associate professor of child health at the University of Missouri Health Center in Columbia, Mo.

Although Justin was sick on the airplane and on the two-hour car ride to the Missouri hospital, he said he was instantly relieved when he was given Stadol, a nasal spray indicated for pain management that goes directly to the brain.

“I never saw anybody look so happy,” said his mother. “I hadn’t seen him smile in 10 years, and he was smiling again. It was like a miracle.”

Kathleen Adams, registered nurse, president and co-founder of the Cyclic Vomiting Syndrome Association, said Justin’s story is not unusual.

“Some patients and their families go through years of searching before a diagnosis of CVS is made,” she said.

According to the National Institutes of Health, CVS has no known cause and affects boys and girls equally.

Starts early

Symptoms typically begin between the ages of 3 and 7 years. In some cases, treatment with migraine medications, anti-vomiting and sedative medications helps.

Episodes in children generally last only a day or two, but adults can have symptoms for almost a week. Adults tend to have about four episodes a year while children can have about 12. Episodes typically begin at night or first thing in the morning.

Other common symptoms include headache, fever, dizziness, diarrhea and severe abdominal pain.

When Justin has an attack, he said his stomach feels as if someone is pounding nails into it.

While the cause is unknown, bouts can be triggered in some people by emotional stress or excitement; certain foods such as cheese; colds; allergies; sinus problems; overeating or eating right before bed; hot weather; menstruation; or motion sickness.

There is no specific test that will confirm the diagnosis.

“Diagnosis is based on the symptoms,” said Qualia, who said he sees about three patients a year with the syndrome.

There is no cure. Severe bouts may require hospitalization for administration of intravenous fluids. Anti-nausea drugs and sedatives may also be delivered intravenously.

Without proper treatment, symptoms can cause dehydration and electrolyte imbalances.

Qualia said he treats the disorder prophylactically with medications that help migraine such as Propranolol, Cyproheptadine and Amitriptyline. During an attack, he prescribes Reglan to help the empty the stomach and Zofran, an anti-nausea medication.

Qualia said that CVS can be frustrating for doctors to treat.

“It’s not easy for patients to put up with it, and a lot of doctors don’t want to treat it because it’s so frustrating,” he said.

When Justin was 18, doctors diagnosed him with Crohn’s disease, an inflammatory bowel disease in which parts of the digestive tract get swollen and have deep sores called ulcers. Doctors don’t know the cause.

Other doctors thought he had a bowel obstruction, and he was operated on twice for removal of part of his bowel.

“You feel so helpless,” said Barbara O’Connor, a divorced single mother. “There’s nothing worse than seeing your child in that kind of pain, and there’s nothing you can do about it.”

Having a life

Justin failed the eighth grade because he missed so much school, and he dropped out of Schenectady High School when he was a junior because he was in Ellis Hospital for six months. He later earned his GED. He attempted to attend Hudson Valley Community College to study mechanics but had to drop out because of the disorder.

Today he takes several medications that keep his symptoms under control, and he has gained 15 pounds since June. He has been hospitalized once since June.

His goal is to return to school, study mechanics and get a job.

“I want him to live a normal life like anyone else without having to worry about this hanging over him all the time,” said Justin’s mother. “He’s doing much better, but I hope that someone comes up with something soon that totally cures this.”

For information, contact Barbara O’Connor at [email protected]

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