CYCLIC VOMITING SYNDROME (CVS) An Under-Explained, Under-Diagnosed, Difficult-to-Treat Disorder that Affects Children As Well As Adults It Wreaks Havoc on Entire Families
What are CVS’s Symptoms? • CVS is most likely the most intense form of vomiting know to humans. It is characterized by recurrent, prolonged attacks of severe nausea and vomiting that occur once every 5-10 minutes for hours, up to 10 days. First detected in 1882, CVS has no apparent cause. • On average, CVS is characterized by debilitating, 24 to 48 hour long episodes of explosive vomiting associated with continuous nausea that does not remit after vomiting. The episodes are accompanied by profound lethargy. • Episodes may begin at any time, but typically start during the night or early morning. Patients are described as being in a “conscious coma.” The symptoms can be life threatening due to dehydration and electrolyte imbalance.
Who is Affected By CVS? • School aged children. Based on two population surveys, CVS affects 1 in 50 (2%) of school aged children. CVS is under diagnosed. • CVS also affects adults and causes untold upheaval in normal life at home and in the workplace. Adults being diagnosed with CVS are our fastest growing segment of the population at this time.
What Treatments Are Needed? • CVS creates the need for intense medical intervention—a child with CVS has a 51% chance of requiring intravenous hydration. This is 20 times more need than with stomach flu (rotavirus gastroenteritis). • Treatment is generally supportive with early intervention in a dark quiet environment for sleep and IV fluids when needed. Some current medications do show promise for some CVS sufferers in preventing, shortening and aborting episodes. However, there is no one treatment that has been found to help patients on a reliable basis. What works for one, may not work for another—and what works now, has been proven to stop working for no apparent cause.
How Well Is CVS Diagnosed? • Multiple specialists are called in to consult about diagnosis and treatment but to no avail. • On average, there is over 2-1/2 year delay in being diagnosed correctly after symptoms begin. It is not uncommon to hear of families going for as long as 12-15 years undiagnosed.
What Are CVS’s Medical Costs? • CVS diagnosis requires an average of 17 diagnostic tests—including blood work, urinary tests, x-rays, endoscopy—costing at least $4,600 per patient. • The estimated yearly cost of medical management—including 3 emergency room visits, 2 in-patient hospitalizations, 13 home managed visits, cost of daily medications—is $14,000. The hospital visits can be as frequent as several times a month resulting in thousands of dollars in medical costs. One family reported as much as $15,000. in one month. • The estimated yearly family cost of medical management and lost work time is $20,000. This figure is an average. Many families are affected much more dramatically.
What Are CVS’s Family and Social Costs? • CVS has a severe impact on family life: o The child suffers, misses school activities and may become academically and socially disabled. School-aged children miss an average of 24 (mean) days of school per year. o The parent or adult sufferer loses work and quality family time. o Family life is disrupted by unpredictable episodes of vomiting and dehydration. The emotional turmoil of having an unexplained, undiagnosed disorder that is difficult to treat wreaks havoc on the entire family. The impact on marriages and the mental health of all involved is immeasurable.
Facts collected by: Dr. B U.K. Li, MD-CVSA Advisor, Director, International CVS Program – Children’s Memorial Hospital Chicago Kathleen Adams- CVSA