The patient was seen at CHOP weeks later — her appointment was delayed due to COVID-19 — and her condition had deteriorated substantially. She was routinely regurgitating more than 30 times a day — leading to a rapid weight loss of 20 pounds (roughly one-fifth of her body mass) from her 5’2” frame. The loss of nutrients left her bloated, pale, dizzy and cold. She didn’t have energy for school or sports — both of which she’d previously enjoyed. AK also experienced repeated stomach pain that awakened her at night.
Our multidisciplinary team — consisting of a gastroenterologist, psychologist, and dietitian — jointly evaluated AK. After examining her, interviewing her and her parents about her symptoms, and reviewing findings from blood tests and an endoscopy, we diagnosed her with rumination syndrome. Then, we began exploring the right combination of treatments to halt the frequent regurgitation, regain her lost weight, meet her fluid needs and improve her quality of life.
Outpatient treatment
While medication can help soothe some contributing factors of rumination syndrome, it cannot reverse the condition. Instead, our primary treatment focus was to help AK relearn how to properly eat and digest food.
AK was prescribed a lactose-free vitamin supplement and our GI and psychology teams began a series of shoulder-to-shoulder telehealth appointments (during COVID-19) to regularly assess AK and begin cognitive behavioral therapy to help her learn how to manage her symptoms. One element of treatment included teaching AK diaphragmatic breathing, which is used as a competing response to stop the automatic abdominal contractions that cause rumination.
Outpatient treatment decreased AK’s rumination symptoms, but she continued to regurgitate most of what she ate and drank throughout the day. As a result, she continued to lose weight, preventing the teen from receiving the nutrients she needed to regain her strength and resume her active lifestyle. Our team strongly suspected AK may have also developed gastroparesis given her precipitous weight loss. Co-morbid GI conditions are common among youth, and require close coordination between gastroenterologists, behavioral health specialists, and registered dietitians to develop a coordinated treatment plan to address all issues.
Hospitalization, stabilization and personalization
To stabilize AK’s condition and confirm suspected findings, AK was hospitalized for a few days. We performed a second endoscopy and a gastric emptying scintigraphy — considered the “gold standard” in diagnosing gastroparesis. Our goal was to better understand how AK’s body was processing food and then to develop a personalized treatment regimen.
Testing confirmed AK had gastroparesis, in addition to rumination syndrome. The combination of disorders was affecting the normal spontaneous movement of her gastrointestinal smooth muscles and delaying food from being digested. AK’s rapid weight loss likely contributed to the onset of gastroparesis symptoms and further complicated her rumination.
While AK was hospitalized, our team began overnight NG tube feeds to ensure AK would receive adequate nutrition that would be digested more easily and less likely to be regurgitated. Then, our team worked to develop a coordinated plan to address AK’s rapid weight loss, rumination and gastroparesis, all of which were now intertwined.
After being stabilized in the hospital, AK was released home and began an individualized, intensive outpatient program that included:
- Nutritional NG tube feeds at night to help her get needed nutrition and regain her strength and stamina
- Gradual exposure to small amounts of food by mouth (we started with 1 Cheerio) and gradually increasing the volume and variety, as tolerated
- Structured use of diaphragmatic breathing during and after oral intake as a competing response to prevent the spontaneous movement of muscles in the abdomen from erroneously moving food into the esophagus
- Medication to help empty the stomach quicker and treat constipation
- This work required AK and her family to participate in 2-3 telehealth visits per week for ongoing treatment and assessment of progress.
Outcome
For the next several months, AK continued the breathing exercises, slowly increased food eaten by mouth and decreased the tube feedings. With our support and that of her family, AK was able to regain control of her health. Six months after being hospitalized, she no longer needed the feeding tube. Treatment shifted to focus on returning AK to baseline, reducing her reliance of diaphragmatic breathing, and preventing possible symptom relapse. She participated in regular appointments with the team for a total of nine months before being discharged from behavioral health, and now AK only meets with GI as needed.
While AK must be careful with food portions to avoid sporadic regurgitation and lingering gastroparesis symptoms, she has resumed her active lifestyle and is now in college. She continues to take medication to support digestion and treat occasional constipation.
Discussion
Though rumination can be a common gastrointestinal issue, it can be complicated by additional factors including food allergies or sensitivities, conditioned body responses and related GI conditions. When a pediatric patient is diagnosed with a condition such as this — and malnutrition is at risk — a referral to center with a specialty in pediatric motility disorders is appropriate. CHOP’s Suzi and Scott Lustgarten Center for GI Motility provides world-class diagnostic resources and services to children with all GI motility and related disorders. From assessment to diagnostic studies, from psychological support to nutritional interventions, we are available to partner with you to coordinate care for your patient and provide long-term follow-up.
Jennifer Webster, DO, is an attending gastroenterologist; Sarah Mayer-Brown, PhD, is a psychologist, both in the Division of Gastroenterology, Hepatology and Nutrition at Children’s Hospital of Philadelphia. This case study was reviewed by Hayat Mousa, MD, Director of the Suzi and Scott Lustgarten Center for GI Motility.
Featured in this article
Specialties & Programs
The patient was seen at CHOP weeks later — her appointment was delayed due to COVID-19 — and her condition had deteriorated substantially. She was routinely regurgitating more than 30 times a day — leading to a rapid weight loss of 20 pounds (roughly one-fifth of her body mass) from her 5’2” frame. The loss of nutrients left her bloated, pale, dizzy and cold. She didn’t have energy for school or sports — both of which she’d previously enjoyed. AK also experienced repeated stomach pain that awakened her at night.
Our multidisciplinary team — consisting of a gastroenterologist, psychologist, and dietitian — jointly evaluated AK. After examining her, interviewing her and her parents about her symptoms, and reviewing findings from blood tests and an endoscopy, we diagnosed her with rumination syndrome. Then, we began exploring the right combination of treatments to halt the frequent regurgitation, regain her lost weight, meet her fluid needs and improve her quality of life.
Outpatient treatment
While medication can help soothe some contributing factors of rumination syndrome, it cannot reverse the condition. Instead, our primary treatment focus was to help AK relearn how to properly eat and digest food.
AK was prescribed a lactose-free vitamin supplement and our GI and psychology teams began a series of shoulder-to-shoulder telehealth appointments (during COVID-19) to regularly assess AK and begin cognitive behavioral therapy to help her learn how to manage her symptoms. One element of treatment included teaching AK diaphragmatic breathing, which is used as a competing response to stop the automatic abdominal contractions that cause rumination.
Outpatient treatment decreased AK’s rumination symptoms, but she continued to regurgitate most of what she ate and drank throughout the day. As a result, she continued to lose weight, preventing the teen from receiving the nutrients she needed to regain her strength and resume her active lifestyle. Our team strongly suspected AK may have also developed gastroparesis given her precipitous weight loss. Co-morbid GI conditions are common among youth, and require close coordination between gastroenterologists, behavioral health specialists, and registered dietitians to develop a coordinated treatment plan to address all issues.
Hospitalization, stabilization and personalization
To stabilize AK’s condition and confirm suspected findings, AK was hospitalized for a few days. We performed a second endoscopy and a gastric emptying scintigraphy — considered the “gold standard” in diagnosing gastroparesis. Our goal was to better understand how AK’s body was processing food and then to develop a personalized treatment regimen.
Testing confirmed AK had gastroparesis, in addition to rumination syndrome. The combination of disorders was affecting the normal spontaneous movement of her gastrointestinal smooth muscles and delaying food from being digested. AK’s rapid weight loss likely contributed to the onset of gastroparesis symptoms and further complicated her rumination.
While AK was hospitalized, our team began overnight NG tube feeds to ensure AK would receive adequate nutrition that would be digested more easily and less likely to be regurgitated. Then, our team worked to develop a coordinated plan to address AK’s rapid weight loss, rumination and gastroparesis, all of which were now intertwined.
After being stabilized in the hospital, AK was released home and began an individualized, intensive outpatient program that included:
- Nutritional NG tube feeds at night to help her get needed nutrition and regain her strength and stamina
- Gradual exposure to small amounts of food by mouth (we started with 1 Cheerio) and gradually increasing the volume and variety, as tolerated
- Structured use of diaphragmatic breathing during and after oral intake as a competing response to prevent the spontaneous movement of muscles in the abdomen from erroneously moving food into the esophagus
- Medication to help empty the stomach quicker and treat constipation
- This work required AK and her family to participate in 2-3 telehealth visits per week for ongoing treatment and assessment of progress.
Outcome
For the next several months, AK continued the breathing exercises, slowly increased food eaten by mouth and decreased the tube feedings. With our support and that of her family, AK was able to regain control of her health. Six months after being hospitalized, she no longer needed the feeding tube. Treatment shifted to focus on returning AK to baseline, reducing her reliance of diaphragmatic breathing, and preventing possible symptom relapse. She participated in regular appointments with the team for a total of nine months before being discharged from behavioral health, and now AK only meets with GI as needed.
While AK must be careful with food portions to avoid sporadic regurgitation and lingering gastroparesis symptoms, she has resumed her active lifestyle and is now in college. She continues to take medication to support digestion and treat occasional constipation.
Discussion
Though rumination can be a common gastrointestinal issue, it can be complicated by additional factors including food allergies or sensitivities, conditioned body responses and related GI conditions. When a pediatric patient is diagnosed with a condition such as this — and malnutrition is at risk — a referral to center with a specialty in pediatric motility disorders is appropriate. CHOP’s Suzi and Scott Lustgarten Center for GI Motility provides world-class diagnostic resources and services to children with all GI motility and related disorders. From assessment to diagnostic studies, from psychological support to nutritional interventions, we are available to partner with you to coordinate care for your patient and provide long-term follow-up.
Jennifer Webster, DO, is an attending gastroenterologist; Sarah Mayer-Brown, PhD, is a psychologist, both in the Division of Gastroenterology, Hepatology and Nutrition at Children’s Hospital of Philadelphia. This case study was reviewed by Hayat Mousa, MD, Director of the Suzi and Scott Lustgarten Center for GI Motility.
Contact us
Suzi and Scott Lustgarten Center for GI Motility