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Childhood-Onset Rumination Syndrome: Insights from 15 Years of Research

Childhood-Onset Rumination Syndrome: Insights from 15 Years of Research 1024 680 Pam Georgiana
Close up color photo of little boy holding hands on his belly

Education is needed to improve diagnostic timelines and treatment outcomes for pediatric patients.

Childhood-onset rumination syndrome presents significant diagnostic challenges, even for gastroenterologists. Physicians often misdiagnose the symptoms as gastroesophageal reflux disease. Initial treatments frequently fail, leading to delays in accurate diagnosis. Patients can experience symptoms for 2 to 3 years before receiving an accurate diagnosis.

“Rumination syndrome typically follows a triggering event, such as a viral illness, surgery or stress. While these factors are not the primary cause, they contribute to heightened nerve sensitivity in the stomach,” explains Ashley Kroon Van Diest, PhD, co-director of the Rumination Treatment Program and clinical lead of the Gastrointestinal Psychology Team at Nationwide Children’s Hospital.

This hypersensitivity causes the stomach to react as though any ingested content is harmful, prompting the abdominal wall muscles to contract. This pressure forces food back up, leading to repeated regurgitation that is either spat out or swallowed again. Treatment includes behavioral therapy and dietary modifications to help patients keep food down.

Nationwide Children’s operates one of only a handful of intensive treatment programs for rumination syndrome in the world. Over the past 15 years, the program has built a substantial database of patient cases, enabling detailed research into the condition. Dr. Kroon Van Diest and a research team recently used this data to evaluate the time between symptom onset and diagnosis among patients referred to the hospital. They also investigated whether diagnostic delays impacted treatment outcomes. The Journal of Pediatric Gastroenterology and Nutrition published the team’s findings.

“I believed that our efforts over the past 15 years, including extensive education and outreach to primary care providers, had shortened diagnostic times and improved outcomes,” says Dr. Kroon Van Diest, who is also a clinical associate professor at The Ohio State University.

The team analyzed 247 patient cases using chart reviews and family-reported questionnaires. The median time between symptom onset and diagnosis was 1 year, with no significant change observed between 2016 and 2022. Among children with available outcome data, 29% met the criteria for symptom resolution after treatment. The study found that longer diagnostic delays led to lower symptom resolution rates.

“Our data relied on rounded time estimates from family reports, which limited precision,” Dr. Kroon Van Diest acknowledges. “We now use stricter methods to capture specific timelines. This will help us better evaluate patient trends and outcomes over time.”

Dr. Kroon Van Diest emphasizes that these findings highlight the critical need for enhanced awareness and targeted education about rumination syndrome among medical professionals. The data shows quick referral to a behavioral psychologist or a program like Nationwide Children’s program can greatly improve treatment outcomes.

“Rumination is a clinical diagnosis. If a patient reports repeated regurgitation symptoms, it should be at the top of a primary care provider’s differential diagnosis list,” Dr. Kroon Van Diest advises. “There is no harm in referring a patient to a behavioral specialist while running additional tests to rule out other issues. Reducing the time to diagnosis is essential for helping kids recover faster.”

 

Reference:

Jia MR, Lu PL, Khoo JS, Sabella J, Yang DM, Puri NB, Vaz K, Yacob D, Di Lorenzo C, Kroon Van Diest AM. Delay in diagnosis is associated with decreased treatment effectiveness in children with rumination syndrome. Journal of Pediatric Gastroenterology and Nutrition. 2024;79(4):850-854.

About the author

Pam Georgiana is a brand marketing professional and writer located in Bexley, Ohio. She believes that words bind us together as humans and that the best stories remind us of our humanity. She specialized in telling engaging stories for healthcare, B2B services, and nonprofits using classic storytelling techniques. Pam has earned an MBA in Marketing from Capital University in Columbus, Ohio.

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