In elementary school, Charlotte Newcomb used to keep a small trash can under her desk. Throwing up in class was mortifying no matter what, but at least cleanup was easier with a trash can within reach.
“I would get really anxious in class, and if I felt like even the slightest bit sick, I just could not be there,” said Charlotte, who is now 15. “I was just so scared of throwing up in front of people.”
By 5th grade, Charlotte was ready for home school. It was better than missing more than 40 school days each year, rotating in and out of the emergency room, exhausted and dehydrated from bouts of relentless vomiting that struck unexpectedly and then disappeared just as suddenly.
“I just want to be a normal kid,” she told her parents.
Charlotte was 4 years old when her perplexing pattern of vomiting started. At first, her parents assumed it was a typical stomach bug.
“She would vomit violently for a few hours and then it would go away,” said her mom, Edie. “And as the weeks went by and it started happening more frequently, I thought, ‘This is really weird.’”
She took Charlotte to their pediatrician in Marquette, Michigan. After the doctor ruled out a brain tumor, the family learned that Charlotte had cyclic vomiting syndrome (CVS), a chronic gastrointestinal disorder that affects around 3 in 100,000 kids. The condition is characterized by at least four episodes of excessive vomiting a year, with kids throwing up multiple times an hour for at least an hour and sometimes for days.
On the online CVS parent message boards, one hospital name kept coming up again and again: Children’s Wisconsin.
Children’s Wisconsin is more than 300 miles from Charlotte’s home in Michigan’s Upper Peninsula, but her family was soon making the trek regularly. They immediately felt at home.
“We really feel that we get top-notch care there,” said Edie. “It’s worth the long drive.”
The Cyclic Vomiting Syndrome Program at Children’s Wisconsin was launched by B U.K. Li, MD, who was a Co-Founder and longtime Medical Director of the International Cyclic Vomiting Syndrome Association. After Dr. Li retired in 2017, Katja Karrento, MD, took over as Program Director and has become a prominent researcher in the field. Dr. Karrento recently led an effort to update the CVS treatment guidelines, which were published in the Journal of Pediatric Gastroenterology and Nutrition in 2025.
Each year, about 150 patients from around the United States and other countries come to Children’s Wisconsin to access clinical trials and personalized, multidisciplinary CVS care.
“We are the largest, dedicated pediatric gastroenterological CVS program worldwide for the number of patients we see,” said Julie Banda, APNP, a Pediatric Gastroenterology Nurse Practitioner who sees patients in the Cyclic Vomiting Syndrome Program and conducts quality improvement projects related to CVS care. “Much of that was due to Dr. Li’s early work and now Dr. Karrento’s research, as well as being the lead on innovations for the condition.”
For Charlotte, it took years of trial and error before CVS felt manageable. And along the way, doctors have learned more about how to effectively treat patients like Charlotte. Drawing lessons from migraine research, doctors identified medications that are better tolerated by patients with fewer side effects. Non-medical treatments, including lifestyle management, have also helped reduce some patients’ medication needs.
“Because of the care we receive, we’ve never felt hopeless even with this very, very challenging disorder,” said Edie. “I feel like they always have something else in their bag to try.”
When Charlotte was 9, she enrolled in a Children’s Wisconsin clinical trial using auricular neurostimulation. The therapy involves a battery-operated device that delivers electrical pulses to different points on the outer ear, which stimulates the vagus nerve. Previous research by the CVS team at Children’s Wisconsin has shown that patients with CVS suffer from an imbalance in their autonomic nervous system, and the vagus nerve is part of that system, controlling many important body functions.
The clinical trial required weekly road trips to Milwaukee to replace the device for six consecutive weeks. But it was worth it — the neurostimulation alleviated Charlotte’s nausea and vomiting and seemed to boost her mood and energy, making it easier to return to normal activities for weeks after treatment.
“That’s when we started getting her life back,” said Edie. “It wasn’t like a light switch shut off, but it was just this constant improvement.”
“It makes doing sports and other stuff way better,” said Charlotte.
Even after the clinical trial was over, Charlotte continued to travel to Children’s Wisconsin for repeat rounds of auricular neurostimulation treatment. Then about two years ago, the family’s insurance stopped covering the device, and the out-of-pocket cost is steep. Charlotte’s family was able to get one round of therapy approved as “compassionate use,” which they saved for a special occasion.
The U.S. Food and Drug Administration (FDA) initially approved auricular neurostimulation using the IB-Stim device as a treatment for children with irritable bowel syndrome and, more recently, functional dyspepsia, another gastrointestinal disorder that can cause pain and nausea. Dr. Karrento is hopeful that clinical access to IB-Stim and similar non-invasive neurostimulation therapies will continue to expand with more research. Her study of 30 children with CVS treated with auricular neurostimulation between 2018-2020 found that patients reported long-term improvements in CVS attacks as well as abdominal pain, sleep, anxiety and overall functioning. She plans to test the therapy further through a large randomized clinical trial starting this fall.
“Research takes a long time, but I think even small studies and how that can influence huge populations of patients is where clinical research is really exciting and why it needs support,” said Dr. Karrento, who is also a Professor of Pediatric Gastroenterology at the Medical College of Wisconsin, the academic partner of Children’s Wisconsin. This commitment to education, research and innovation allows Children’s Wisconsin doctors to constantly be pushing the boundaries of what is possible. And it’s all done in the name of improving patient care. “Helping one or 30 patients in a small trial is great but publishing those findings over a few years spreads the knowledge to so many more patients. And that’s really what it’s all about.”
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Like many chronic conditions, CVS can affect multiple aspects of a family’s life.
“One of the things that is challenging about CVS is it’s an invisible condition to other people except for during the time when the child is very sick,” said Julie. “They often have periods of feeling really well for weeks or months at a time, in between these episodes of very debilitating nausea and vomiting. It takes a large toll on families in terms of missed school, missed days of work for parents, impact on siblings. And we know it significantly impacts the child’s functioning.”
Many patients and parents develop anticipatory anxiety, stressing over when the next vomiting episode will strike. Kimberly Brown, PhD, a Pediatric Psychologist who specializes in disorders of gut-brain interaction, recently joined the Cyclic Vomiting Syndrome Program to offer patients additional support. Dr. Brown and a gastrointestinal psychology fellow help coordinate school plans and CVS-specific care with local therapists as needed.
“Behavioral intervention is the number one treatment that needs to be integrated into all CVS patients’ care,” said Dr. Karrento. “As many as 70% of patients are suffering from concurrent anxiety that just escalates with unresolved medical problems. A psychologist who can spend more time with these families and patients and get them to understand the importance of the mind and gut connections, and how mindfulness interventions can really help this disorder, is actually crucial to improved care.”
Charlotte receives regular cognitive behavior therapy with a Michigan-based therapist.
“That really helps,” said Edie. “And that really stemmed from the Cyclic Vomiting Syndrome Program because they look at the whole patient and know that having this disease is really, really stressful for kids. They’ve realized that kids really benefit from some concrete ways to manage their symptoms.”
As Charlotte got older, her vomiting episodes stopped and were replaced by migraines, nausea and abdominal pain — a common progression of CVS. To keep the migraines at bay, she takes a robust daily regimen of medications and supplements — six pills in the morning and three or four at night — plus additional “rescue meds” when a migraine attack is coming on.
Stress and excitement can be triggers, and even family vacations require researching the nearest emergency room. But over time, Charlotte’s symptoms have improved — especially as she has embraced lifestyle changes recommended by her Children’s Wisconsin care team.
A strict sleep schedule helps because any unexpected wakeup triggers Charlotte’s nausea. She has also learned that frequent meals and drinking plenty of water helps her feel her best. When she becomes nauseated and starts to panic about vomiting in public, she has learned to focus on what is around her instead of her churning stomach.
Outside of home school, Charlotte stays busy by competing in mountain bike races, drawing and making ceramics, playing video games and wandering through town with friends. Even driving down to Chicago to see a concert gave her a taste of normalcy that once never seemed possible.
“There was just a point that we just didn’t think that this would end,” said Edie. “And that’s when we clung to that hope that we were getting from the Children’s Wisconsin Cyclic Vomiting Syndrome Program and the new treatments because it did make it better. Is it gone? No. But it is manageable.”
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