Some facts about CVS (Cyclic Vomiting Syndrome)

Below is an article about a young lady with Cyclic Vomiting Syndrome (What Gracie has been diagnosed with). It's interesting how similar our cases are. Unfortunately, Gracie's episodes last for 6-9 days rather than the 24 hours in this case and Gracie's episodes happen every three weeks unlike this young lady where they only happen every few months or so. It gives me hope though, that her episodes might get shorter and farther apart as she get's older. We are learning that stress and anxiety can be a trigger for episodes. Gracie has had a ton of stress in her life, being in an orphanage for 16 mos. and then being ripped out of everything familiar and thrown into a totally different life with new smells, new people, different foods, etc., etc., etc. I would be a little stressed too. I pray that as she adjusts to her new life and becomes more secure with her new family that she will completely stop the CVS. But I'll take just having farther apart and shorter episodes if that's all we get.

Here is the article...

A Rare Disease, an Even Rarer Young Woman
By: Ariel Englander 02/07/2006

On a quiet street in Fairfield, two women toil over the first snowfall of the season, working together to clear their driveway of its wintry mess. They work well together, shovels lifting, fighting the effects of a Connecticut in December.


They are mother and daughter, and shoveling snow is almost a welcome reprieve from the battle they have been fighting for the last ten years.
The daughter is 15 year old Kristen Koch, a freshman at Fairfield Ludlowe High School. A long-legged girl with pretty brown hair and an easy smile, she seems without a care in the world. But this teen has been fighting a rare, life-disrupting disease since the age of four. Cyclic Vomiting Syndrome (CVS) is an unexplained disorder of children and adults that was first described by a doctor in 1882. The condition is characterized by recurrent, prolonged attacks of severe nausea and vomiting for no apparent cause. Vomiting occurs at frequent intervals, up to five to ten times an hour, and lasts from one to ten days for the worst cases. The sufferers return to their normal health between episodes. Often, hospitalization is required to treat severe dehydration and electrolyte imbalance. The episodes are accompanied by profound lethargy, and the nausea does not abate.
According to the Cyclic Vomiting Syndrome Association, approximately 3,560 people have been diagnosed with the disease in this country. The estimate is that one in fifty children has the disorder, but it is disturbingly under-diagnosed. As doctors have become more familiar with CVS over the last ten years, through the efforts of a small army of physicians, patients, and caregivers, the number of CVS sufferers is on the rise. There is no cure at this time, and treatment is primarily to relieve symptoms and correct dehydration.
Kristen began having episodes at age four. Her father, Douglas Koch, a chiropractic physician, understood that they could not be explained as typical bouts of flu. He insisted on a barrage of tests, and by a process of elimination, which is unfortunately the only way to determine CVS, she was diagnosed with this uncommon illness. For years her episodes were fairly predictable, says Laura Koch, Kristen's mother. About every three to four months they knew they could expect an episode. Unfortunately, by about age 9, the pattern became unpredictable. "I remember we took a cruise for our 20th Anniversary, and I was thinking recently, how were we ever able to plan something like that? Back then it was more consistent", Laura explains. She has kept a detailed log of Kristen's symptoms, noting when they occur, what events preceded the onset of each episode, and other details, in an effort to find some sort of trigger. But after all of these years they can point to nothing in particular. "It doesn't always happen after some big event, but it does seem to happen when stress builds up, it puts her over the edge, like her body has had enough.
Kristen and Laura Koch, are eager to speak about their experience in an effort to raise awareness and share what has become an overwhelming part of their family's life. Kristen explains that during an episode, she usually wakes and is overcome by severe nausea. She is acutely aware of what is in store for her and will spend the next three days on an air mattress in the living room, as her mother vigilantly tends to her needs. When she was younger, Kristen would be hospitalized during the episodes. But over time, the Koch's have learned how to care for Kristen at home, with a well-rehearsed routine that turns the living room into a nursing facility and the household upside down. The Koch's have an older daughter, Jessica, who is a college freshman and Laura and Kristen are quick to acknowledge her sacrifices over the years, including aborted family vacations and birthday celebrations.
Laura explains that during an episode Kristen does not appear to be processing information, almost like a conscious coma. But in fact she is fully aware. The nausea is so consuming that she does not move and barely speaks. Nausea medications and sedatives can help with symptoms, but are not always effective. Recently Kristen's episodes have become shorter, 24 hour battles, with two days needed to recover. Though significantly shorter than when Kristen was younger, this is time her mother must be away from her job, and family plans must be cancelled. Laura speaks kindly about her employer's understanding of her situation. She also mentions the ministers from First Church Congregational in Fairfield who come by to offer support and give inspiration.
Kristen has managed to miss little school, as weekends tend to be the most common time for her attacks. She only missed three days of school by the end of September, and is maintaining A's and B's in her classes. Her Fairfield schools have been very accommodating, and both Kristen and Laura greatly appreciate this as they have heard horror stories about the struggles other families have gone through.
As a rare and greatly misunderstood disease, CVS is not only misdiagnosed, but sometimes the parents are accused of inducing the child's vomiting. Munchausen's by Proxy is an illness of the caregiver, most often the mother, which leads them to cause illness or injury to their child in order to gain attention for themselves. Unfortunately, the suspicion of the disorder is something many CVS families deal with on a regular basis. The CVS Association website has information of this problem and has been regularly involved in helping families get back custody of their children after being accused of doing them harm.
The Koch's are aware of six other CVS sufferers in Fairfield, and at least seventy people diagnosed with the disease in Connecticut. As a rare affliction, it has garnered little attention and the requisite funding needed to promote awareness and research. Four years ago Kristen decided she wanted to do something to help. She had taken part in numerous walks for other causes, like the Relay for Life held by the American Cancer Society. She was determined to create a walk for CVS. At first her parents were reluctant. How could they do that kind of planning when there was the possibility that Kristen would be sick when the event took place? They suggested a tag sale, something significantly more manageable. Kristen worked hard to promote it, received lots of donations, and was able to raise over $900 for the CVS Association.
But she didn't give up her dream for a walk. "Kristen is persistent - that's why we have a second dog, a bunny, fish! How could we say no when she was willing to do so much?" Laura says. So in 2003 they started the first CVS Walk in the country. 100 people came out to show support, raise money and promote awareness. Held at the Sherwood Island State Park in Westport, The CVS Walk to Stop the Cycle Walks continued in 2003 and 2004, and to date Kristen has raised over $50,000 for her cause. In 2003, at age 12, Kristen received the Volunteer of the Year Award from the CVS Association. Not long ago, Laura Koch learned that it has been Kristen's efforts that have funded the only CVS Association office in the country, located in Ohio, and staffed by a group of dedicated volunteers. This has provided even more incentive to a family that believes in doing everything it can to prevent others from having to suffer from CVS.
The good news is that Kristen's Walk has inspired others around the country to follow suit. Last year a walk took place in Chicago, and this year another will be held in Florida. Kristen's family has already begun the work for their walk this October. Getting corporate sponsors is the biggest challenge. Most companies aren't interested in supporting causes with little public recognition. But Laura Koch is extremely grateful to all of the sponsors who have helped out, including Paul Newman, the Minuteman Newspapers, and Subway who provided food for the events.
Kristen's last episode was a few months ago, and she has gone as long as ten months without one. Most children who develop the disorder grow out of it by age twelve, so Kristen is unusual in that regard. Although they keep their fingers crossed that each time will be the last, "it's worse to get your hopes up because when she gets sick again it's so heartbreaking", Laura admits. "If we want to look at what good CVS has brought our family, funny as that sounds, we've learned to enjoy the good moments in life, and to avoid stress." Clearly they could also include instilling a special young woman with an unusual sense of responsibility and community. Kristen Koch walks the walk.
For information about the Walk to Stop the Cycle of Cyclic Vomiting Syndrome, contact CVSWalk@msn.com or call 203-335-8293. For information on CVS, contact: Cyclic Vomiting Syndrome Association, 3585 Cedar Hill Rd, NW Canal Winchester, Ohio 43110 Website: www.cvsaonline.org Phone: 614- 837-2586




Ariel Englander is a freelance writer. She lives with her family in Westport.




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