Synopsis: Children suffering from a rare disorder called cyclic vomiting may vomit for days on end once or twice a month. Experts describe how the disorder is often misdiagnosed and remains difficult to treat. However, children often eventually outgrow the disorder as it transitions into migraine headaches.
Host: Nancy Benson. Guests: Kathleen Adams, mother of cyclic vomiting sufferer and founder, President and Research Liason, Cyclic Vomiting Syndrome Association; Dr. B Li, Professor of Pediatrics and Director, Cyclic Vomiting Program, Medical College of Wisconsin; Dr. Katja Kovacic, pediatric gastroenterologist, Children’s Hospital of Wisconsin.
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Cyclic Vomiting Syndrome
Nancy Benson: Just about everyone feels nauseated every now and then. Whether it’s food poisoning or a stomach bug, we’ll do anything to stop that queasy sensation. Unfortunately, a lot of the time vomiting is the only path to feeling better. But imagine throwing up every 10 minutes for days on end. For Molly, this nightmare started as a baby. It wasn’t until a decade later that a doctor recognized her symptoms and gave her mother a diagnosis of “cyclic vomiting syndrome,” a disease that’s relatively unknown, difficult to treat and severely impacts quality of life.
Kathleen Adams: It’s what happens every six to eight weeks. She would start vomiting then once we got her tucked back in bed it would start about every five to ten minutes she would have a vomit and then she may do that for an hour or so and then rest for maybe an hour or so and then wake up and start the vomiting again. Her length of an episode was two-and-a-half days, generally, sometimes three.
Nancy Benson: That’s Kathleen Adams, Molly’s mother and the founder, President and Research Liaison of the Cyclic Vomiting Syndrome Association.
Adams: Dizziness, intense nausea, thirst. Molly did not have headaches or bellyaches, but some people with CVS do. They’re plagued with pain and nausea and vomiting. That would turn on like a light switch first thing in the morning… kaboom! After she was finished, it would turn off like a light switch and she would be ready for her most frequent request …a little cheeseburger.
Nancy Benson: For 11 years, Kathleen could not solve the mystery behind her daughter’s continuous vomiting. But after finally finding a doctor who knew what was happening, Molly started to improve.
Adams: He was able to medicate her with the most commonly used medication still to this day for cyclic vomiting syndrome which is Amitriptyline or Elavil, as its known to the public — an old anti-depressant, which is also used for chronic pain and migraine. Molly, within a few months, started getting less episodes, less intense, and gradually over the next five years or so into adolescence, the episodes got much, much better, and they evolved then into a migraine headache. This is kind of the common textbook picture of the disease that Molly has.
Nancy Benson: Today, Kathleen is devoted to spreading the word about cyclic vomiting syndrome. Dr. B Li is a professor of pediatrics and the director of the cyclic vomiting program at the Medical College of Wisconsin.
Li: It essentially is recurring spells of vomiting. They’re usually very severe and they cause a child or adult the inability to walk or talk, so they are completely out of it. They vomit to the point of dehydration, end up in emergency rooms and very much look like they have the worst case of food poisoning or stomach flu, except that it keeps happening over and over again. Ten times in a year would not be atypical.
Nancy Benson: While some people may underestimate the disease, Li argues that it’s no joke.
Li: These go on at least several hours. Our average is 24 to 48 hours. We have some outliers at about 10 days, so it can be very prolonged, but it usually will stop on its own eventually. There are even some kids that vomit more than 400 times per episode.
Nancy Benson: Researchers say episodes can be triggered by stress, lack of sleep, prolonged fasting – even by an exciting event. For patients and caretakers, learning about and avoiding common triggers can make CVS more manageable. However, Li says many people suffer for too long because the medical community is largely unaware of the condition. He says that patients are repeatedly misdiagnosed and not taken seriously by doctors.
Li: We still encounter children who, for example, have not been properly diagnosed for 10 years. They’ve been going in and out of emergency rooms for 10 years with other kinds of diagnosis — psychiatric, recurrent stomach flu, etc., and more often it’s, well, ‘I think it’s in your head.’
Nancy Benson: While CVS is certainly a very real disorder, it’s correct that the origins appear to be neurological. Li says family history shows a pattern that is key to figuring out what causes the syndrome.
Li: About 80% of the children have somebody, or themselves, but usually somebody else in the family that has migraine headaches. There are also, when we mine the family tree further, there tend to be members with a number of other things, including anxiety, depression, they have a disorder called postural orthostatic tachycardia syndrome where they get faint, lightheaded when they stand up quickly, they can have sleep disorders, irritable bowel syndrome. So, when you look at the family trees you can find a lot of other, what we call, functional disorders.
Nancy Benson: Treatments for the syndrome exist, but once the vomiting starts, little can be done except to head to the hospital. There, IV fluids help with dehydration while anti-nausea meds and sedation slow down the vomiting. To avoid the hospital stay, preventive drugs help to reduce the rate of episodes.
Katja Kovacic: In little children we use Cyproheptadine, which is used for many different conditions. It has some allergy anti-allergic properties, but it’s also used for different vomiting disorders. It tends to help as a prophylactic in young children. In older children we use Amitriptyline. There are also anti-seizure drugs that may work for this disorder.
Nancy Benson: That’s Dr. Katja Kovacic, a pediatric gastroenterologist at the Children’s Hospital of Wisconsin. She says most children eventually outgrow cyclic vomiting by adolescence, as it often transforms into migraine headaches. For the small number of adults with CVS, the syndrome is more severe. Anxiety disorders affect about half of all people with CVS, and a lack of stamina, dizziness, sleep disorders and limb pain are also common.
Li: Even when they’re well, they are not quite well. They are still afflicted, especially, for example, with limited stamina. So, exercise — they can’t keep up with their peers; it’s a basic challenge that they face. They face other challenges that we didn’t recognize before. We have done studies on what we call quality of life. They are as bad as anybody with Crohn’s Disease, or what we would consider organic gastrointestinal disease.
Nancy Benson: Cyclic vomiting syndrome can be managed, but it’s traumatic to live with and care for. Thankfully, it’s rare. For the vast majority of us, feeling nauseated is simply a product of something we ate. You can find out more about the cyclic vomiting syndrome association at cvsaonline.org, or through a link on our webpage, radiohealthjournal.net. Our writer this week is Amirah Zaveri. Our production directors are Sean Waldron and Nick Hofstra. I’m Nancy Benson.