Presentation from the 2014 CVSA Adult and Family Conference
My daughter, Mollie, was born in 1978 on her sister’s sixth birthday after a happy uneventful pregnancy. Her four year old brother was ready for another sister and her red-headed, freckled-faced presence filled our house with joy. At approximately age 12 months, Mollie was diagnosed with mild unidentified global developmental delays. When Mollie was about one and a half, she woke up one morning vomiting for no apparent reason. This was the beginning of eleven years of vomiting episodes that were mysterious, horrible and undiagnosed. Initially she vomited about two times, went to sleep for about 2 hours and then woke up her usual vigorous self. Six months later, this scene was repeated. About every six weeks for the next six months she did the same thing but each episode of vomiting became a bit more extended. By the time she was about three years old she was having episodes about once a month or so lasting for one to two days. In spite of multiple medical interventions for diagnosis and treatment, the cause of vomiting could not be determined and no suitable treatment was found.
During the years when Mollie was about four until she was about ten, she was admitted to the local children’s hospital about every four to six weeks for iv therapy. The episodes were lasting for two to four days. The nausea and vomiting was relentless. She would vomit about six to eight times an hour continuously except for some periods of sleep in between. She missed a great deal of school and the medical treatment needed was rigorous and left Mollie and our family in a wake of upheaval and deep distress.
In order to avoid the disruption of hospitalization, Mollie had central iv lines placed for home iv care over a period of about four years. Mollie’s medical support team searched for answers about cause and treatment as relentlessly as she was vomiting. Nothing was found and we continued to feel like we were the only family in the world with a child suffering from this miserable and mysterious illness.
Eleven years later, in 1990, by chance, our pediatrician found a letter to the editor in a medical journal describing a similar case. This letter led us to Dr. David Fleisher, MD, a pediatric gastroenterologist from the University of Missouri, Columbia. With Dr. Fleisher’s immediate assessment and treatment plan, Mollie’s condition began to improve at about the age of thirteen. Dr. Fleisher prescribed amitriptyline for Mollie at that time which brought improvement in the frequency, duration and intensity of the episodes. Mollie continues to take amitriptyline today. During late adolescence the vomiting episodes transformed into migraine headache. She suffered from migraine which started abating in her late 20s. Today, at the age of 35, she is essentially episode free with the exception of very short episodes of headache and/or vomiting triggered by anxiety or airline turbulence. Needless to say her life is much improved.
In 1999, Mollie was diagnosed via mitochondrial DNA samples with probable mitochondrial disease by a clinician and investigator doing studies about the relationship of CVS and mitochondrial disease. This diagnosis accounts for her mild cognitive disability.
In 1993, a handful of families from the USA and the United Kingdom came together in Milwaukee, Wisconsin for a weekend of comparing stories and making plans. Dr. Fleisher and Dr. B U.K. Li were present as well. Everyone gathered agreed to start CVSA – a medical non-profit. With the help of a strong and committed medical advisory team and some very dedicated patients, parents, and grandparents, there are now six CVS Associations around the globe and contact physicians and/or families in approximately thirty countries throughout the world. The global mission is one of outreach, education and research support. The Cyclic Vomiting Syndrome Association USA/Canada is at work in Northern America to find families still suffering in isolation and to promote and fund medical research to continue the search for answers about this devastating illness.
Of special note, it is not unheard of to have Social Services called in situations like Mollie’s in order to rule out cases of Munchausen’s Syndrome by Proxy. Ruling out this diagnosis is extremely important and relatively simple because of the unique symptomatology involved. The volunteers of CVSA are moving ahead with dogged determination to continue our outreach efforts to alert the medical community about CVS in order to prevent further unnecessary suffering in families that are already devastated by the effects of this illness.
Kathleen Adams, B.S.N., R.N.
President, Co-founder, Research Liaison
My daughter started getting her episodes around five years old. We would take her to her doctor and would be told it's just a stomach bug. Years of this stomach bug and yet my other two children never got this bug. Finally, her doctor wasn't available so we had to see the PA. She couldn't believe that we were never sent anywhere else to see what was going on. We were sent to a gastric doctor where they finally diagnosed her with CVS. This was after years of the doctor acting as if she was faking trying to get out of school. It's hard to watch your child vomit over and over. Its hard when your child won't eat a single bite of food for weeks on end. It's hard when your child drops more than ten pounds a week. It's hard when there is nothing you can do to help them. We now know when an episode is coming on. Her symptoms are mild headaches followed by mild stomach pains and nightmares or night terrors. Then the severe vomiting and severe stomach pains. Her episodes have lasted as long as a month. We have gotten those episodes down to a couple weeks. I am glad we have found out it wasn't a stomach bug. I would rather it have been a stomach bug, but never heard of a bug lasting so long and so severe. We have changed doctors, the doctor she has now has not accused her of faking it. We are going through an episode right now which I believe is brought by the anticipation of going to her first time in summer camp. We had to change her camp date but we will prevail.
My name is Katelynn Leonardelli. I am 20 years old, and I have been dealing with CVS for 15 years of my life. I am currently being treated by Dr. Lee in Milwaukee and rarely have episodes, but I have had a long journey to get to this point. I really would like to share my story and give others hope that you can find treatment and get back to living a normal life without episodes.
It started when I was five years old and in kindergarten, I would have random days when I would get up for school early in the morning and throw up until around 1030. At first my family assumed it was just a persistent stomach flu but after these symptoms were on going throughout the years, they knew it wasn’t. My family and even my doctors were puzzled by these strange symptoms. During my episodes, I couldn’t keep anything down and would throw up multiple times until I felt well enough to eventually start consuming water. These symptoms lasted throughout grade school and into high school, some years, even months having multiple episodes and some having none. I went to multiple doctors, have had two scope procedures and many other tests, but everything came up negative. For awhile, people thought it was my anxiety or just thought I was faking it, which got pretty frustrating.
Things started to go downhill during the beginning of my sophomore year of high school. I woke up and knew right away that I was going to have an episode and as always my mom allowed me to stay home from school. The next day the same thing, I woke up to an episode, I was used to this because most of the times when I have episodes they happen two or three days consecutively. But as the week went on so did the episodes. I got to the point where I missed a full week of school and the episodes weren’t stopping. My family set up appointments with my counselor and teachers to inform them what was going on and what the next action was to take. For the next thirty two days my school day went as followed: I would wake up overflowing with anxiety (knowing I was going to have an episode) puke multiple times until my car pool came to pick me up. I would carry a plastic bag with me and usually puke a few times in the car (one time I forgot to bring a bag and had to puke on the side of the car). When I arrived at school I checked in with my homeroom teacher and went straight to the second floor guidance room. There they had a small supply closet that they let my use, it was about 10ft long and 7ft wide. They gave me a waste basket and let me sit there until I was done with my episode and could go to school around 10:30am. I was horrible, I remember I tried to puke quietly because I didn’t want anyone to hear me let alone open the door and see me puking. I remember when I was in the car one day one of my friends mom made a comment like, ‘I think it might be your anxiety. Why don’t you just try to take deep breaths?’ Even my homeroom teacher questioned me once thinking that I was faking it to try to get out of school. One day I remember sitting on the floor in my kitchen feeling so hopeless, thinking that I would have to plan my job, my school, my life around my episodes.
My mom was trying to comfort me when all of a sudden she remembered something that my doctor mentioned years ago, Cyclic Vomiting Syndrome, but since there was no way to prove it and I was an atypical case they just pushed the idea to the side. We immediately went on the computer and searched the symptoms, and I fit them like a glove. That was the first glimmer of hope that I had in awhile. We called my doctor right away and he told us about on of the leading CVS doctors who happens to be right in my own town! I was ecstatic! I counted down the days until my appointment. Finally the day came and Dr. Lee started me on the drug called “amytriptylne”, which happens to be the same drug that my mom takes for her migraines, and who would have guessed, but it worked!
I have my life back. I can finally wake up in the morning without worrying about having an episode and missing out on anything. I am writing this not to make people feel bad for what I went through but to give them hope that their life can turn around and things can get better.
CVS controlled my life for a year. It was devastating to both me and my family. It took several doctor visits and hospital stays before we even began to understand what was happening to me. I would be fine for weeks, then out of nowhere, I would have crippling pain and uncontrollable vomiting for days.
I had to withdraw from the university I was attending because I was unable to keep up with my studies and manage CVS all at once and I was (for a while) unable to keep a job. Since CVS isn’t very common, it wasn’t unlikely for people to think I was lying about my condition or just “looking for attention”. It was extremely discouraging and stressful to hear employers and even some friends to express their disbelief about my claims. Eventually, I realized I could no longer care for myself alone and moved back home with my parents for the extra care and support.
The process of finding a diagnosis was miserable. I went through almost every test imaginable, tried multiple medications, and even had my gall bladder removed.
Thanks to my wonderful determined mother who spent hours doing research we finally had an idea of what was going on with me. After dealing with CVS for some time, my doctors and I were able to figure out what medications helped with symptoms and what steps to take to lessen the severity of the episodes. Now that I have my CVS more under control I am able to return to school and work without worrying about fits of vomiting very often.
The Annual Auction will be held
Sunday, November 3, 2013
from 1:00 to 5:00
at Drkulas Bowl
6710 Cahill Ave.
Inver Grove Heights, MN.
It was November 8th 2012, and I was once again fighting to have my son admitted to the hospital. My son had started vomiting on September 1st and had not stopped. Three months of vomiting 10 to 30 times a day. He’d been hospitalized twice at that point and had had multiple trips to the ER and would spend up to 8 hours a day at an infusion center getting intravenous fluids. But no one could or would stop the vomiting. So what do you do when you fall through the cracks in the system of our healthcare? There really are too many to name. Every twist and turn in our quest to get care for our son resulted in another pitfall or roadblock that kept him from getting quality care. Quality care in a manner that should have had him back on his feet in a matter of days instead of months.
First, the illness that we were dealing with was not a common one. It usually takes years to diagnose. We were told on numerous occasions that he had the flu. He would throw up for Continue reading
Resting State Brain Response to Chronic Nausea and Cuff Pain
The proposed study will examine the CNS circuitry of nausea in the human brain. Results found from motion sickness studies in healthy adults will be applied to guide the analysis of brain physiology in patients suffering from chronic nausea, i.e. cyclic vomiting syndrome (CVS).
Basic Criteria Eligibility: This study will aim to evaluate patients (n=25) diagnosed with CVS who are in an inter-ictal phase, i.e. at least 48 hours following cessation of any nausea/vomiting episode.
- Subjects age 18 to 80 years
- Diagnosis of Cyclic Vomiting Syndrome by Rome III criteria
EXCLUSION: Subjects who currently have an acute illness, those who are awaiting transplantation, and those who have a chronic illness, such as kidney failure, congestive heart failure, and diabetes. Use of prescription benzodiazepines within the previous 3 days, use of prescription opioids and self-reported use of cannabinoids within the previous 7 days are another exclusion criteria.
Another exclusion criterion is any nausea/vomiting episode within 48 hours prior to experimental session.
Principal Investigator: Dr. Braden Kuo
Study Coordinator: Shahar Castel, 617-726-0196
Prospective Registry in Cyclic Vomiting Syndrome at MGH
The researchers are looking for people to take part in the Cyclic Vomiting Syndrome Prospective Registry Study. They are exploring the causes, progression, and impact of the disease.
Basic Criteria Eligibility: Diagnosed with CVS and 18 years of age or older
Principal Investigator: Dr. Braden Kuo
Study Coordinator: Shahar Castel, 617-726-0196