eva's CVS Story
This is Eva. When you look at her she seems to be your normal active 11-year-old, and she is. Unless you see her during one of her CVS episodes.
Eva has suffered with CVS for as long as we can remember. When she was a toddler she would have frequent vomiting spells that would last anywhere from 18 - 36 hours. We thought it was just the stomach flu because with a little hydration, rest, and support she would recover quickly and life would go on. It became a little joke that if anyone even said the words "stomach flu" she would get it. Little did we know, it was no laughing matter.
Her episodes remained quite mild until she was 8 years old when she had her first "bad" bout. Down for 8 days and so sick it broke our hearts. Numerous visits to the doctor and a stomach flu diagnoses. "Keep her hydrated, don't worry that she's not eating, and let just let her rest. She will eat when she is feeling better." She did get better and life went on.
The summer before she turned 9 the episodes were coming about every 8 weeks and she would be sick for anywhere from 6 to 8 days (missing a week or more of school each time). The pain, nausea and vomiting would cause her to just lay on the bathroom floor and sob for hours, nothing would relieve her suffering. Unable to keep even water down she would wind up in the hospital for fluids and IV medication to both stop the vomiting and ease her pain. They performed all kinds of tests and diagnostics to try to figure out what was wrong with her, they all came up normal. So, the diagnoses was the stomach flu...EVERY TIME. Even though nobody else around her had been sick.
Fortunately, her primary physician decided that enough was enough and sent us to a specialist (paediatric gastroenterologist) after she suffered through three particularly bad bouts back to back. The GI took one look at her medical records and spoke to us briefly before he confidently made the diagnosis of Cyclic Vomiting Syndrome. He put her on daily medication (Amitriptyline) and gave us prescriptions for the nausea (zofran, benedryl and promethazine) and told us exactly what to do when an episode begins. He also gave us a course of action to present at the ER if the episode got so bad we couldn't get it under control.
While we are still tweaking the medications to find the dosage that keeps her healthy without making her too tired, I am glad to say that although she has still had episodes, they only last for about 2 days and only an hour or so are as intense as her previous ones. And no trips to the ER!
Oh, her triggers... Anxiety, excitement, stress, lack of sleep, illness or infection, some kinds of chocolate, processed meats, and overexertion. The problem is... She's 11! Favourite foods are pizza and chocolate. What does she like to do? Have sleepovers with her friends and stay up all night. She loves to play soccer, volleyball and to ski. And life is just plain exciting, stressful and it all makes her anxious. Trying to keep everything in moderation so she stays healthy and at the same time letting her do as much as she can to live life to its fullest is our constant balancing act. But this girl is a fighter!
Although there is no cure for CVS, we will be eternally grateful to the doctor who diagnosed Eva and set us on the right path with both preventative medications and the supportive care protocol for when she does get sick, it has been so incredibly reassuring to us.