Mysterious vomiting syndrome still stymies doctors and children
By Dr. Peter Nieman, Calgary Herald September 11,
In 1982, Dr. S. Gee was one of the first clinicians who described a condition in which patients vomited in a periodic or cyclical manner. Since then the complex science of vomiting has expanded rapidly. Next month, an international conference on this topic is scheduled to take place in Pittsburgh, Pennsylvania (see internationalvomitingconference.org for more details).
Cyclical Vomiting Syndrome (CVS) is now well recognized by the majority of astute clinicians, and even featured in the entertainment world (a 2012 episode of Grey’s Anatomy featured a patient with CVS).
CVS is characterized by a pattern of recurrent, discrete and self-limiting episodes of severe vomiting. It has a typical onset and a consistent duration. It is marked by a child who gets pale, lethargic and at times sick enough to require emergency hospital visits to prevent dehydration and manage severe abdominal pains.
CVS can be associated with headaches, lethargy, a loss of appetite, abdominal pains and a sensitivity to light (photophobia).
It may be triggered by fasting, lack of sleep, menstruation, foods (such as cheese, chocolates, MSG and caffeine), and excitement caused by holidays or birthday parties.
A family history of migraines is not uncommon and some patients with CVS also suffer from motion sickness.
CVS is also called abdominal migraine or periodic syndrome by some, although CVS is probably the more accurate term to use.
It affects children starting in the elementary school age range. CVS affects girls more commonly (the female: male ratio is 3:2)
Patients who suffer from this debilitating condition often are diagnosed after a delay of up to 2.5 years.
A mother whose daughter suffered for 11 years before CVS was diagnosed found a support group for CVS patients in 1993. This mom — also a RN — is the current president of the Cyclical Vomiting Syndrome Association (CVSA). The Association also has a number of the Board Members are CVS patients who were either misdiagnosed or who were told that the problem was in their heads and they there was absolutely nothing wrong with their bodies.
In the recent CVSA newsletter there is a feature of a new board member who self-diagnosed his CVS condition after being frustrated by his gastroenterologist who was not even aware of CVS. He now gives lectures with his current gastroenterologist, giving hope to other CVS families.
Since this condition can be confused with a number of other causes of vomiting, the North American Society for Pediatric Gastroenterology Hepatology and Nutrition (NASPGHAN) published a formal or standardized approach to diagnose and treat patients with CVS. To diagnose CVS patients, NASPGHAN declares that patients must vomit for a few hours up to 10 days; they may have as many as three attacks in six months; they vomit for at least four to six times per hour; the attacks are at least one week apart and patients experience absolute normal health in between these events.
The medical journal is very specific at making the point that if the vomiting is associated with bile, abdominal pains and blood in the vomit then tests such as an abdominal ultrasound must be done. Additionally, a gastroenterologist may consider endoscopy and blood tests to rule out other abnormalities.
Also, if the vomiting is associated with severe headaches, an altered mental status, asymmetrical motor movements, an abnormal gait or abnormal eye movements — a MRI of the brain must be considered.
Patients with CVS have normal investigations, and yet the issue continues, disrupting school attendance, causing families much frustration and often lead to sleep deprivation (many of these vomiting attacks have its onset in the early mornings — usually between 3 and 4 a.m.).
Some families have been falsely accused of fabricating these events, and sadly, got labelled with an incorrect diagnosis of Munchhausen by proxy.
The treatment of CVS is complex and in reading the paper I was struck by how experts struggled to find consensus as to the best approach; how they recommended the use of medications that are not officially recognized for pediatric use; and how the levels of evidence varied greatly between various studies. (The paper is posted in a PDF format under the resources section of www.cvsaonline.org)
Dr. Robert Issenman, professor of Pediatrics at McMaster in Hamilton, is the only Canadian Medical Advisor for CVSA. I had the honour to meet with him at a previous meeting of the Canadian Pediatric Society and asked his opinion about CVS. His answer essentially came down to this: there are still many unknowns about this condition and a support group such as CVSA has done a lot to help families get through these terribly upsetting episodes.
Dr. Nieman is a Calgary-based community pediatrician, the co-founder of the Calgary Pediatric Weight Clinic and the host of www.Healthykids.Ca Dr. Nieman appears bi-weekly on CTV Morning Live.
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