Cyclical Vomiting Syndrome or You Are Not Crazy

Jeff was by every measure a very healthy child. He was three when it began but only coinciding with other mild childhood infections. He did have an occasional migraine starting at around age seven but the abdominal pain, nausea and vomiting never had a name. It occurred twice, three times a year at most. We’d get him to the pediatrician as quickly as possible when vomiting began. Small for his age, yet he could lose up to five pounds in a day during one of these episodes. It was essential that he be treated immediately. The office nurses had standing orders to give him an injection of Compazine to stop the pain and vomiting and a full liter of normal saline to rehydrate him. He’d recover instantly, the doctor would check him and he’d request a meal on the ride home. Still, it wasn’t a serious concern for the pediatrician or for us. I’d had it as a child along with a few of my siblings, but we never needed treatment. We outgrew it. We thought Jeff would. Life went smoothly along until he was thirteen. One day he had a typical episode with his typical treatment. But it didn’t work for very long. He got sick again within hours. We returned to the pediatrician who was covering for our regular doctor who gave him second Compazine injection, following which he experienced a dystonic reaction; a neuromuscular reaction. You might think of it as being like a severe allergy, where he had uncontrolled movement of his jaw, mouth and tongue making him feel like he was choking. We rushed him back where he was given another medicine to counteract the injections. While there he lost his blood pressure. A wild scene ensued which would be a prelude to the insanity of the next eighteen years of our lives. Jeff could never be given Compazine again; the one medication in his whole life that had always worked to stop his vomiting episodes and relieve his excruciating abdominal pain and nausea. We returned home hoping, fully expecting life to return to normal. It didn’t. Jeff went to school a day or two later but repeatedly became ill. Due to his reaction, he couldn’t be given anything from the same class of medication as Compazine; the ones that would be a surefire effective treatment. An emergency admission landed him in Hasbro Children’s Hospital with doctors searching for a diagnosis. He underwent extensive testing, history and family history. It was an astute young resident on a Fellowship who first called us into a meeting and asked us if we’d ever heard of Abdominal Migraine. “No.” we said, curiously. We hadn’t. “It’s the same thing as Cyclic Vomiting Syndrome or C.V.S. Have you ever heard of that?” Relieved to have an answer that didn’t sound fatal, “No, what is it?” “It’s a migraine variant, a brain/gut disorder. The gut has more nerves in it than the brain. Like migraine, we don’t fully understand it, but it’s what your son has. He’s a textbook case. It peaks in adolescence, sometimes lasting into adulthood but they usually outgrow it. It frequently runs in families and often there’s a history of migraine headache.” “How do you treat it?” We asked. “We treat much like migraine; Rest, quiet, I.V.s, medications for nausea and vomiting some of which we’ve already tried. There are others we can try. Usually it’s a matter of time. As soon as he’s able to keep food down you can take him home.”
Given trials of different classes of medications, tricyclic antidepressants, Zofran, Reglan, Ativan, appetite stimulants; my child became a walking zombie. Nothing worked long enough to keep him well. More Hasbro admissions came, then something called a “Partial Hospitalization Program” where they first broached the idea that his illness was more “behavioral” than physical and treated him as such. He grew more ill. A couple of months passed. Disrupted to a point where we worried that he’d never recover in this isolated environment with maladjusted teens or catch up with his peers at home, we sought a diagnosis from the leading expert, Dr. Richard Grand, known as The Grand Master of diagnosing C.V.S. sought out through a support network, the top researcher in the U.S. Dr. Richard Boles of Chicago, IL. He recommended Dr. Grand at Boston Floating Children’s Hospital who agreed to see Jeff. Hasbro resisted our attempt to transfer Jeff. I had to obtain and hand deliver all of his records because they refused to send them; a scene that played out again over the years. Dr. Grand diagnosed Jeff with C.V.S. There were years of more hospitalizations and terror which became synonymous to us as we lost Jeff, he lost us, we all lost each other. Over a decade later, in his mid-twenties Jeff courageously sought and obtained an adult diagnosis in attempts to resolve his adolescence of being convinced that he was crazy by a small but all too powerful faction of the medical community. The young resident who initially diagnosed him on his very first admission to Hasbro at the age of thirteen in 1999 was correct. Jeff’s diagnosis of C.V.S. remains to this day.
10.18.18

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