CVS AWARENESS DAY

Please share and boost the signal
Originally posted by bflyw at CVS AWARENESS DAY

	Cyclic Vomiting Syndrome is an unexplained functional disorder that is most often is seen in children but can occur in all ages. The condition is characterized by recurrent, prolonged attacks of severe nausea, violent vomiting (6-8 times an hour), and prostration with no apparent cause. Some may experience severe abdominal pain. These attacks happen in cycles which can occur several times a month. Many sufferers have daily symptoms of nausea, vomiting and pain between attacks. Not much is known about CVS and there is no cure. CVS typically develops during childhood, between the ages of 3 and 7. Although it often burn out during adolescence, it can persist into adulthood.
Why do we need an awareness day for CVS? CVS is unknown to most healthcare professionals and patients often don’t get the help they need. It is extremely under-diagnosed, and there is typically over a two and a half year delay for correct diagnosis after the symptoms begin. It is not uncommon to hear of patients going undiagnosed for 12 – 15 years. CVS patients often describe being denied help in ER and being flagged as drug-seekers. There have been cases of parents being accused of Munchausen syndrome by proxy, where the child was actually suffering from CVS.
THE EPISODES There are several conditions that may cause recurrent vomiting. In most cases however, CVS can be differentiated from the others by three main features: paroxysmal (sudden onset), stereotypical episodes, and periods of wellness in-between. Paroxysmal (sudden onset) Most patents with CVS feel fairly well, until struck by a sudden attack of nausea, which usually progresses to vomiting. The nausea and vomiting often start in the morning, and can even wake the patient from sleep. Stereotypical episodes Steriotypical episodes means that each vomiting attack resembles similar episodes they’ve had previously. CVS is characterized by recurrent, prolonged attacks of severe nausea and rapid fire vomiting that occurs once every 5-10 minutes and lasts for hours. Most often the attacks last between 8 and 24 hours. However, for some patients, attacks can be as brief as 1-2 hours, and for some, it can last up to 10 days. On average, a CVS patient endures 24 to 48 hour long episodes of explosive vomiting associated with continuous nausea. The nausea does not abate after vomiting. The person is often pale, listless, and resists talking. They may drool or spit and have extreme thirst. They may experience intense abdominal pain, and less often experience headaches, low-grade fever, and diarrhea. Prolonged vomiting may cause mild bleeding from irritation of the esophagus. The symptoms can be life threatening due to dehydration and electrolyte imbalance. CVS can create the need for intense medical intervention. It is 81% likely that a child with CVS will need IV hydration — 75 times higher than with stomach flu (rotavirus gastroenteritis). Self-limited episodes The episodes are self-limited with return of normal health between episodes. Most patients feel completely healthy between episodes. After the episode resolves, the affected patient often returns to their “normal self” within a few hours, and starts drinking and eating normally. While the period of wellness between episodes typically lasts between 1 and 3 months, some patients may have more frequent episodes (every 1-3 weeks), while others may only have an episode every 6 – 12 months. OCCURENCE CVS may begin at any age. It can persist for months, years, or even decades. Females are affected slightly more often than males. The person may be prone to motion sickness, and there is often a family history of migraines. There is a high likelihood that childrens’ episodes will be replaced by migraine headaches during adolescence. DIAGNOSIS CVS is difficult to diagnose because it is not frequently recognized, and is often incorrectly identified as stomach flu or food poisoning. Currently, there are no blood tests, x-rays, or other specific procedures that can be used to diagnose the disorder. A diagnosis may be made by careful review of the patient’s history, a physical examination, and lab studies to rule out other diseases. Multiple specialists are often consulted for diagnosis and treatment, yet it is still misunderstood and misdiagnosed as stomach flu, acid reflux, or something psychological in origin. On average, and there is typically over a two and a half year delay for correct diagnosis after the symptoms begin. It is not uncommon to hear of patients going undiagnosed for 12 – 15 years. TREATMENT Treatment is generally supportive, with an emphasis on early intervention. A dark, quiet environment is critical for sleep. Hospitalization and IV fluid replacement may be necessary. Medication trials often succeed in something to prevent, shorten, or abort episodes. Links are being made between CVS and mitochondrial diseases along with the use of CoQ10, L-carnitine and other supplements.
WHAT CAN YOU DO TO HELP?
You can share this post and help spread the awareness, you can help fund research by donating directly to CVSA or you can donate to CVSA every time you shop at Amazon
Click on to http://smile.amazon.com/ every time you shop, and set Cyclic Vomiting Syndrome as your charity to give to. Amazon gives 0.5% of the total to CVSA. The Cyclic Vomiting Syndrome Association (CVSA) serves the needs of cyclic vomiting syndrome (CVS) sufferers, their families and professional care givers by raising awareness and providing education and support to those affected by cyclic vomiting, abdominal migraine and related disorders while advocating for and funding research. Established in 1993, CVSA has grown from a handful of interested parents and professionals, into a network that includes over 40 medical advisors and volunteers serving in the U.S. and Canada, as well as over 30 other countries worldwide. The association’s primary focus is working toward a cure, through the support of several promising research initiatives, and supporting its members by strengthening communications and offering a wide range of resources for education and support. http://cvsaonline.org/