Tag Archive for: gastroenterology

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Children’s National Hospital ranked #5 in the nation on U.S. News & World Report’s Best Children’s Hospitals Honor Roll

U.S. News BadgesChildren’s National Hospital in Washington, D.C., was ranked #5 in the nation on the U.S. News & World Report 2023-24 Best Children’s Hospitals annual rankings. This marks the seventh straight year Children’s National has made the Honor Roll list. The Honor Roll is a distinction awarded to only 10 children’s hospitals nationwide.

For the thirteenth straight year, Children’s National also ranked in all 10 specialty services, with eight specialties ranked in the top 10 nationally. In addition, the hospital was ranked best in the Mid-Atlantic for neonatology, cancer, neurology and neurosurgery.

“Even from a team that is now a fixture on the list of the very best children’s hospitals in the nation, these results are phenomenal,” said Kurt Newman, M.D., president and chief executive officer of Children’s National. “It takes a ton of dedication and sacrifice to provide the best care anywhere and I could not be prouder of the team. Their commitment to excellence is in their DNA and will continue long after I retire as CEO later this month.”

“Congratulations to the entire Children’s National team on these truly incredible results. They leave me further humbled by the opportunity to lead this exceptional organization and contribute to its continued success,” said Michelle Riley-Brown, MHA, FACHE, who becomes the new president and CEO of Children’s National on July 1. “I am deeply committed to fostering a culture of collaboration, empowering our talented teams and charting a bold path forward to provide best in class pediatric care. Our focus will always remain on the kids.”

“I am incredibly proud of Kurt and the entire team. These rankings help families know that when they come to Children’s National, they’re receiving the best care available in the country,” said Horacio Rozanski, chair of the board of directors of Children’s National. “I’m confident that the organization’s next leader, Michelle Riley-Brown, will continue to ensure Children’s National is always a destination for excellent care.”

The annual rankings are the most comprehensive source of quality-related information on U.S. pediatric hospitals and recognizes the nation’s top 50 pediatric hospitals based on a scoring system developed by U.S. News.

“For 17 years, U.S. News has provided information to help parents of sick children and their doctors find the best children’s hospital to treat their illness or condition,” said Ben Harder, chief of health analysis and managing editor at U.S. News. “Children’s hospitals that are on the Honor Roll transcend in providing exceptional specialized care.”

The bulk of the score for each specialty service is based on quality and outcomes data. The process includes a survey of relevant specialists across the country, who are asked to list hospitals they believe provide the best care for patients with the most complex conditions.

The eight Children’s National specialty services that U.S. News ranked in the top 10 nationally are:

The other two specialties ranked among the top 50 were cardiology and heart surgery, and urology.

Erin Teeple

Why a colorectal transition program matters

Erin Teeple

Erin Teeple, M.D.

Children’s National Hospital recently welcomed pediatric and adult colorectal surgeon Erin Teeple, M.D., to the Division of Colorectal and Pelvic Reconstruction. Dr. Teeple is the only person in the United States who is board-certified as both a pediatric surgeon and adult colorectal surgeon, uniquely positioning her to care for people with both acquired and congenital colorectal disease and help them transition from pediatric care to adult caregivers.

What is the Colorectal Transition Program?

The Colorectal Transition Program helps young adults with congenital or acquired colorectal conditions transition their care from pediatric care providers to adult care providers. It is critical that they receive guided transitional care because they often have complex medical and surgical histories from the time they are born affecting more than one organ system. A transitional care team which knows the patient on the pediatric side and can help deliver them to the right doctors and care providers in an adult setting will smooth the transition. Collaborative care across specialties including colorectal surgery, gynecology, urology and gastroenterology helps ensure continued care of all organ systems affected. Similar transition programs already exist for other conditions such as congenital heart disease and cystic fibrosis.

What’s new about this program?

I am both a pediatric surgeon and an adult colorectal surgeon, which means I can care for these children even prenatally and continue that care throughout adulthood. There is no other program in the United States led by a practicing pediatric surgeon who is also board-certified in adult colorectal surgery.

In addition, the collaboration between Children’s National Hospital and Medstar means we can bring unprecedented partnerships with urology, gynecology and gastroenterology on the adult side to offer collaborative care akin to the kind of care we offer our pediatric patients in the Division of Colorectal and Pelvic Reconstruction.

Who will benefit from this program?

Teenagers and adults with congenital and acquired colorectal disease, such as cloaca and other anorectal malformations, Hirschsprung disease, inflammatory bowel disease (IBD), pelvic floor dysfunction, familial adenomatous polyposis (FAP), those who have cecostomy or have had in their past a complex reconstruction will benefit the most from this program.

We have started to transition our existing young adults into this program. We also have seen many adults who have struggled to find care since leaving a pediatric care setting decades ago. These people have come from the local area as well as nationally and internationally to find experienced and collaborative care they have desperately sought.

How is Children’s National Hospital leading the way?

By recruiting the only U.S. surgeon boarded in both pediatric surgery and colorectal surgery, Children’s National will offer unique expertise to both initial surgical reconstruction and care and add a wealth of experience to the care of these children as they age into adulthood.

Having a devoted clinician with a foot in both the pediatric and adult worlds will foster long term relationships and build the depth of the team providing clinical care to all our patients and their families.

Why do you think it is so important to involve a surgeon with your training in the care of these kids?

A pediatric colorectal surgeon is critical to the initial care of an infant with congenital colorectal disease. My knowledge as an adult colorectal surgeon adds a different perspective to the treatment plan for our young patients but also will bring key insight to the process of transitioning that care to providers who specialize in adults later down the road. I also bring the knowledge and experience of a pediatric surgeon to the adult side, which gives me the ability to know the complex congenital anatomy that needed to be reconstructed when the patient was a child and to bring together a team optimized for the care of often complex conditions. Adults with these conditions also have unique needs that are different from the typical adult colorectal patient, and my specific expertise gives me the right skills to help them.

USA line art map with a wheat plant icon

State of Celiac Disease in the United States

USA line art map with a wheat plant iconVahe Badalyan, M.D., director of the Children’s National Celiac Disease Program, discusses the current state of celiac disease in the United States, including diagnosis and care among pediatric populations.

Q: In your opinion, how would you classify the state of Celiac Disease among children in the United States as it compares to 10 years ago?

A: Celiac disease in the United States is increasingly recognized as a common disorder of childhood. While this can partly be attributed to improved recognition and more testing by primary care providers, “true incidence” of this immune-mediated disease is also said to be rising, independent of the screening practices.

While there is a larger variety of gluten-free food options available today, these options are often more costly than their gluten-counterparts. Additionally, gluten-free food options are not covered by insurance companies. With inflation and rising food prices, there is a real concern for increased economic burden and food insecurity for the families of children with celiac.

Q: Are there any misnomers about Celiac Disease that you think are important to address?

A: Classic symptoms of celiac disease, including diarrhea and malnutrition, now occur in a minority of celiac patients. There is a rising proportion of milder or asymptomatic presentation at the time of diagnosis. Paired with the fact that most celiac patients identified through mass-screening did not have a family history of celiac disease (~90%) or gastrointestinal symptoms (70%), one may need to have a high index of suspicion for children with atypical presentation, such as neurologic symptoms, iron and vitamin D deficiency.

Q: What excites you about the future of treatment for Celiac Disease?

A: I am encouraged that researchers across the globe are testing new, pharmacologic therapies for celiac disease. Some of the tested compounds, such as latiglutenase or TAK-062 , involve breaking down gluten-using enzymes, while others, such as TAK-101 aim to induce immune tolerance. These compounds are still at the early stages of the long and arduous process of drug development and approval. Current randomized trials typically include adults, although some recently opened enrollment to adolescents. While there are no guarantees, I am cautiously optimistic that in the future we will have pharmacologic, non-dietary treatment options for celiac disease.

Q: How is Children’s National a leader in the field of pediatric Celiac Disease?

A: Concerns about gluten exposure can be quite stressful for our patients and families, which can lead to hypervigilance, anxiety and even depression. We are fortunate to have a full-time psychologist, Shayna Coburn, Ph.D., as part of our Multidisciplinary Celiac Disease Program team. This allows us to treat not only physiological symptoms and concerns associated with celiac disease, but to also evaluate the psychological problems that may arise as a result of the condition.

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Children’s National named to U.S. News & World Report’s Best Children’s Hospitals Honor Roll

US News BadgesChildren’s National Hospital in Washington, D.C., was ranked No. 5 nationally in the U.S. News & World Report 2022-23 Best Children’s Hospitals annual rankings. This marks the sixth straight year Children’s National has made the list, which ranks the top 10 children’s hospitals nationwide. In addition, its neonatology program, which provides newborn intensive care, ranked No.1 among all children’s hospitals for the sixth year in a row.

For the twelfth straight year, Children’s National also ranked in all 10 specialty services, with seven specialties ranked in the top 10.

“In any year, it would take an incredible team to earn a number 5 in the nation ranking. This year, our team performed at the very highest levels, all while facing incredible challenges, including the ongoing pandemic, national workforce shortages and enormous stress,” said Kurt Newman, M.D., president and chief executive officer of Children’s National. “I could not be prouder of every member of our organization who maintained a commitment to our mission. Through their resilience, Children’s National continued to provide outstanding care families.”

“Choosing the right hospital for a sick child is a critical decision for many parents,” said Ben Harder, chief of health analysis and managing editor at U.S. News. “The Best Children’s Hospitals rankings spotlight hospitals that excel in specialized care.”

The annual rankings are the most comprehensive source of quality-related information on U.S. pediatric hospitals and recognizes the nation’s top 50 pediatric hospitals based on a scoring system developed by U.S. News.

The bulk of the score for each specialty service is based on quality and outcomes data. The process includes a survey of relevant specialists across the country, who are asked to list hospitals they believe provide the best care for patients with the most complex conditions.

The seven Children’s National specialty services that U.S. News ranked in the top 10 nationally are:

The other three specialties ranked among the top 50 were cardiology and heart surgery, gastroenterology and gastro-intestinal surgery, and urology.

hand holding blocks that spell out IBD

Q&A with Carmelo Cuffari, M.D., on inflammatory bowel disease

hand holding blocks that spell out IBDCarmelo Cuffari, M.D., the new director of Inflammatory Bowel Disease (IBD) Program at Children’s National Hospital is a pediatric gastroenterologist with over 25 years of expertise in managing children and adolescents with Crohn’s disease and ulcerative colitis. His areas of research include drug development and the pharmacology and genomics of immunomodulatory drugs in inflammatory bowel disease and in transplantation.

Here, Dr. Cuffari tells us more about the program he is leading and what it means for the future of pediatric IBD patients at Children’s National.

Q: What are some of the most valuable changes or advancements for the program you hope to see in the next couple of years?

A: In my position as director of IBD, Children’s National supports my goals for the program which include:

  • Expanded regional accessibility to an IBD specialist
  • Potential to develop international services
  • Potential to develop a multidisciplinary pediatric IBD program that would include surgery, psychology and genetics
  • Expanding staff to include another IBD specialist to increase our reach

Q: What makes the IBD at Children’s National unique from other programs in the country?

A: We have the unique possibility of developing a colorectal team with our surgical colleagues. This level of collaboration is unique and is a function of our division being under the department of pediatric surgery.

Q: Where do you see research in IBD going in the next few years?

A: There are many areas of exciting growth in research. The areas I am most excited about include:

  • Developing a tailored therapeutic approach to disease management that is disease phenotype specific
  • Developing biomarkers that may help identify which part of the immune system is dysregulated
  • Very early onset IBD (<6yrs) will be better defined genetically and immunologically
gluten free cupcakes

Grant funds behavioral intervention study of teens with celiac disease

Shayna Coburn

Shayna Coburn, Ph.D. was awarded a National Institute of Health (NIH) K23 Career Development Grant from the National Institute of Diabetes and Digestive and Kidney Diseases.

Shayna Coburn, Ph.D., was awarded a National Institute of Health (NIH) K23 Career Development Grant from the National Institute of Diabetes and Digestive and Kidney Diseases. This is the first NIH funded behavioral intervention study focused on children and teens with celiac disease.

The award will allow Dr. Coburn to refine and test a behavioral intervention for teens with celiac disease and their parents. Using feedback from teen and parent stakeholders, the goal of Dr. Coburn’s research is to improve a telehealth-based coping skills group for teens and parents in the Children’s National Celiac Program and then test whether it improves their quality of life and self-management of the gluten-free diet. Dr. Coburn will also conduct a randomized controlled trial to compare outcomes to those patients who receive current standard of care with the Celiac Program.

Dr. Coburn is a licensed psychologist in the Division of Gastroenterology, Hepatology and Nutrition at Children’s National Hospital and is in charge of psychosocial services in the Celiac Disease Program, which offers consultations and empirically supported interventions to help families navigate the challenges of diagnosis and management of the gluten-free diet. She also contributes to the local and national celiac disease community through her development of support and coping skills groups, educational programming, advocacy and research.

Vahe Badalyan

Q & A with Celiac Disease Program Director Vahe Badalyan, M.D.

Vahe Badalyan

Vahe Badalyan, M.D., Celiac Disease Program Director

Children’s National Hospital is helping to improve the way pediatric celiac disease is diagnosed and treated. We are proud to announce that Vahe Badalyan, M.D., is the new director of our Celiac Disease Program. Here, Dr. Badalyan tells us more about his work and what makes the Children’s National Celiac Disease Program unique.

Why did you decide to work in this field?

I developed my interest in gastroenterology (GI) from the first months of being a pediatric intern at Inova Fairfax Children’s Hospital. As a resident, I was fortunate to work with and learn from the pediatric GI group led by Ian Leibowitz, M.D., whose mentorship and example inspired me to choose a career in pediatric GI. This field is ripe with so many opportunities to improve the lives of children with very diverse medical conditions, such as celiac disease, inflammatory bowel disease, liver disease and short bowel syndrome, while achieving professional fulfillment and satisfaction. Later, as a pediatric GI fellow at Children’s National, I was fortunate to work with the late John Snyder, M.D., who was in the foundation of developing our celiac program and was so passionate about helping children and families cope with celiac disease. Part of the reason I joined the celiac program is to continue Dr. Snyder’s legacy and to build on his vision to provide excellent care, education and advocacy for our celiac patients.

What is the importance of the multidisciplinary clinic approach for celiac care?

The advantage of the multidisciplinary clinic approach is that patients receive comprehensive care that is tailored to their specific needs. In this setting, medical, nutrition and mental health professionals come together to share the care priorities from their unique perspectives and build a roadmap for the patient that incorporates details of care that may otherwise have been missed. Patient questions pertaining to multiple specialties can be discussed and answered right then and there.

What are some of the most valuable changes or advancements for the program you hope to see in the next couple of years?

We hope to expand the screening and diagnosis of celiac disease in our communities, as many patients with celiac have minimal or no symptoms and go undiagnosed for years. Early detection will allow us to get involved sooner in patients’ lives and make a bigger difference for them. We also hope to be a part of clinical research on celiac disease, including drug therapy trials.

What makes the Celiac Program at Children’s National unique from other programs in the country?

We place a big emphasis on mental health and have a dedicated psychologist working with the children and their families. We also have an excellent celiac educator, dietician, coordinator and nurse practitioner who empower our patients to cope with celiac, lead normal lives and achieve their dreams and aspirations.

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For fifth year in a row, Children’s National Hospital nationally ranked a top 10 children’s hospital

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Children’s National Hospital in Washington, D.C., was ranked in the top 10 nationally in the U.S. News & World Report 2021-22 Best Children’s Hospitals annual rankings. This marks the fifth straight year Children’s National has made the Honor Roll list, which ranks the top 10 children’s hospitals nationwide. In addition, its neonatology program, which provides newborn intensive care, ranked No.1 among all children’s hospitals for the fifth year in a row.

For the eleventh straight year, Children’s National also ranked in all 10 specialty services, with seven specialties ranked in the top 10.

“It is always spectacular to be named one of the nation’s best children’s hospitals, but this year more than ever,” says Kurt Newman, M.D., president and CEO of Children’s National. “Every member of our organization helped us achieve this level of excellence, and they did it while sacrificing so much in order to help our country respond to and recover from the COVID-19 pandemic.”

“When choosing a hospital for a sick child, many parents want specialized expertise, convenience and caring medical professionals,” said Ben Harder, chief of health analysis and managing editor at U.S. News. “The Best Children’s Hospitals rankings have always highlighted hospitals that excel in specialized care. As the pandemic continues to affect travel, finding high-quality care close to home has never been more important.”

The annual rankings are the most comprehensive source of quality-related information on U.S. pediatric hospitals. The rankings recognize the nation’s top 50 pediatric hospitals based on a scoring system developed by U.S. News. The top 10 scorers are awarded a distinction called the Honor Roll.

The bulk of the score for each specialty service is based on quality and outcomes data. The process includes a survey of relevant specialists across the country, who are asked to list hospitals they believe provide the best care for patients with the most complex conditions.

Below are links to the seven Children’s National specialty services that U.S. News ranked in the top 10 nationally:

The other three specialties ranked among the top 50 were cardiology and heart surgery, gastroenterology and gastro-intestinal surgery, and urology.

Shikib Mostamand

Functional GI Disorders Clinic helps patients with complex GI conditions

Shikib Mostamand

Shikib Mostamand, M.D., pediatric gastroenterologist at Children’s National Hospital, shares what makes the FGID clinic model unique.

Children’s National Hospital has started a multi-disciplinary Functional GI Disorders (FGID) Clinic to treat patients with complex gastroenterology disorders and illnesses that are unique to children. Shikib Mostamand, M.D., pediatric gastroenterologist at Children’s National shares what makes this clinic model unique.

What is the purpose of this clinic?

The purpose of this clinic is to establish a multi-disciplinary clinic to diagnose and treat functional GI Disorders (FGIDs) using a comprehensive, multi-modal approach to chronic abdominal pain and sensory predominant FGIDs (functional abdominal pain/visceral hyperalgesia, irritable bowel syndrome, chronic nausea, etc.). These are complex patients with various biopsychosocial and pathophysiologic mechanisms underlying their abdominal pain.

The clinic endeavors to serve as a unified home for their care. It strives to be the ideal venue to utilize diverse primary care, subspecialty and therapeutic offerings for managing chronic abdominal pain and related FGIDs.

How will this work benefit patients?

We have adopted a multi-disciplinary approach where the pediatric gastroenterologist, GI psychologist, psychiatrist and a pain medicine specialist work together to comprehensively take care of patients and improve their quality of life. This clinic model will allow us to capture valuable data and generate research questions and data to help us better understand pediatric FGIDs and improve care. Additionally, this will minimize the number of visits patients will have to make, as they will see multiple specialties in the same visit at the same time.

How is Children’s National leading in this space? How unique is this work? 

There are only a few other institutions that provide a collaborative, multi-disciplinary approach like this. These programs focus only on functional abdominal pain and not other functional GI disorders.

This model and approach to FGID is unique to Children’s National and not offered at many leading pediatric institutions. Thus, we are working towards innovating the care and creating a future standard for taking care of children with FGIDs.

NASPGHAN meeting logo

Children’s National Gastroenterology team presents virtually at NASPGHAN conference

NASPGHAN meeting logo

The North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) conference provides experts with an advanced understanding of the normal pediatric development and physiology of diseases of the gastrointestinal tract and liver.

The Children’s National Hospital gastroenterology team was due to present in-person at the conference but were unable to as a result of the COVID-19 pandemic. Instead they presented educational sessions virtually to gastroenterology experts across the country. The presentations spanned a variety of topics and are listed below:

  • Trisomy 21: Not all duodenal abnormalities are Celiac Disease
  • Celiac Kids Research Consortium (CeliacKIDS)
  • Postoperative complications in pediatric IBD patients on biologic therapy undergoing intra-abdominal surgery
  • 6 week infliximab trough levels as predictor of therapeutic maintenance infliximab trough levels and patient outcomes
  • Inflammatory bowel disease characteristics in pediatric patients of South Asian origin in the United States
  • Investigating treatment response rates in pediatric inflammatory bowel disease patients after switching biologics
  • Severely elevated fecal calprotectin in a pediatric patient with persistent giardiasis
  • Persistent hypoglycemia after treatment of gestational alloimmune liver disease (GALD)

The 2021 annual conference will be held on November 4-6 in Nashville, Tennessee.

Briony Varda

Q&A with urologist Briony Varda

Briony Varda

Briony Varda, M.D., M.P.H., is fellowship trained in pediatric genitourinary reconstructive surgery and her subspecialty interests include the care of patients with spina bifida and the neurogenic bladder, cloacal anomalies, hydronephrosis, vesicoureteral reflux and posterior urethral valves, among others.

Children’s National Hospital recognizes many urologic disorders and illnesses that are unique to children. As such, we pride ourselves in working with top urology experts, including Briony Varda, M.D., M.P.H., pediatric urologist, who recently joined the Urology Division at Children’s National.

Dr. Varda is fellowship trained in pediatric genitourinary reconstructive surgery and her subspecialty interests include the care of patients with spina bifida and the neurogenic bladder, cloacal anomalies, hydronephrosis, vesicoureteral reflux and posterior urethral valves, among others.

Here, Dr. Varda tells us more about her work and what it means for the future of pediatric urology patients at Children’s National.

Q: Why did you decide to work in this field?

I have always thoroughly enjoyed working with children. They keep you on your toes, tell it straight, make you laugh and demonstrate unique resilience. At the same time, surgery allows me to work with my hands, while being creative and helping others. Finally, I had great mentors within pediatric urology who strongly influenced me in a positive way.

In sum, the kids, the surgery and the people led me here.

Q: What is the importance of urology care?

We have three goals in pediatric urology: protect the kidneys and bladder, prevent infection and help our patients stay dry.

Although it’s usually clear when kids have urinary tract infections or trouble with urinary accidents, it’s not always visible when there is a problem with the kidney or bladder. Urologic care is therefore important because it prevents long-term damage that might otherwise go unnoticed until it is too late. This is particularly true for patients with abnormal functioning of the bladder related to a neurologic cause, such as spina bifida or a tethered spinal cord.

Q: How has the program expanded and what are some of the most valuable changes you hope to see in the next couple of years?

Our Spina Bifida Program currently includes physicians from physical medicine and rehabilitation (PMNR), orthopedics, neurosurgery and urology. Our newest additions include a full-time nurse practitioner who facilitates care coordination and has a clinical expertise in bowel management, two new urologists (myself and Christina Ho, M.D.), and Mi Ran Shin, M.D., who is our new PMNR physician.

We are also collaborating closely with the new Pediatric Colorectal & Pelvic Reconstruction Division for patients who need advanced bowel management. These additions will go a long way to helping improve the day-to-day living of our patients and help improve their long-term medical outcomes.

In the coming year, we are anticipating welcoming another full-time nurse to our program, offering more patient-facing resources including a webpage focused on urodynamics and an array of new patient education materials. We are also hoping to establish a regional transitional care network for our adolescent and young-adult patients.

Q: The Colorectal Program at Children’s National includes three urologists. How does this collaboration allow for the care of more complex cases at this hospital?

We are fortunate to be part of the Colorectal Program here at Children’s National Hospital. We provide subspecialty expertise for patients born with anorectal malformations, including cloacal anomalies and cloacal exstrophy. Although historically considered a general surgery problem, patients with anorectal malformations have a high rate of concomitant conditions affecting their genitourinary anatomy and function. By coordinating clinical care and surgery within a multidisciplinary team, we provide comprehensive care for even the most complex patients – nothing goes unnoticed and each subspecialist provides a unique perspective on management as it relates to their field.  Along with ourselves and the colorectal surgeons, we regularly collaborate with gynecology, gastroenterology, interventional radiology and anesthesia.

Q:  What is some of the research you’re working on now that you’re looking forward to the most?

We are currently designing a set of research projects aimed at investigating low-value healthcare utilization (for example, emergency room use and inappropriate testing) among patients with spina bifida. I plan to investigate institutional patterns and then expand out to the Washington, D.C., Maryland, Virginia area and the national setting. By identifying patterns in low-value healthcare utilization and their associated factors, we can ideally improve care delivery for this special healthcare needs population.

We are also working on institutional protocols to enact recently published guidelines by the Spina Bifida Association and the CDC so that we can eventually contribute our own data to national registries. This will pave the way for increasingly rigorous spina bifida research in the future.

feeding tubes

NIH grant funds development of pediatric feeding tube placement device

feeding tubes

A new grant will help to finalize development of the Pediatric PUMA-G System, the world’s first and only ultrasound-based procedure for placing feeding tubes into the stomach.

Researchers at Children’s National Hospital have received grant funding from the National Institute of Diabetes and Digestive and Kidney Diseases, within the National Institutes of Health (NIH), to finalize development of the Pediatric PUMA-G System, the world’s first and only ultrasound-based procedure for placing feeding tubes into the stomach. The funding will also support the first clinical trial of this technology in pediatric patients.

“Children’s National was chosen because we have a strong record of innovating pediatric devices and surgical procedures through the Sheikh Zayed Institute and we have a busy clinical interventional radiology service,” says Karun Sharma, M.D., Ph.D., director of Interventional Radiology and associate director of clinical translation at the Sheikh Zayed Institute for Pediatric Surgical Innovation (SZI) at Children’s National. “We are proud to be a part of this collaboration that will potentially help improve care of pediatric patients who cannot tolerate feeding by mouth.”

The feeding tubes are vital for children who cannot eat or swallow and require liquid nutrition (known as enteral feeding). Common feeding tube placement procedures for children may expose them to risks from invasive surgical tools or from ionizing radiation, which may lead to cancer in young patients at elevated rates. The PUMA-G System is less invasive and uses ultrasound to help physicians image the body during the procedure.

The grant, totaling $1.6M, will clinically evaluate the Pediatric PUMA-G System in collaboration with CoapTech, a biotechnology medical device company and two other premier pediatric medical centers — New York-Presbyterian Morgan Stanley Children’s Hospital and Children’s Hospital of Philadelphia.

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Children’s National ranked a top 10 children’s hospital and No. 1 in newborn care nationally by U.S. News

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Children’s National Hospital in Washington, D.C., was ranked No. 7 nationally in the U.S. News & World Report 2020-21 Best Children’s Hospitals annual rankings. This marks the fourth straight year Children’s National has made the list, which ranks the top 10 children’s hospitals nationwide.

In addition, its neonatology program, which provides newborn intensive care, ranked No.1 among all children’s hospitals for the fourth year in a row.

For the tenth straight year, Children’s National also ranked in all 10 specialty services, with seven specialties ranked in the top 10.

“Our number one goal is to provide the best care possible to children. Being recognized by U.S. News as one of the best hospitals reflects the strength that comes from putting children and their families first, and we are truly honored,” says Kurt Newman, M.D., president and CEO of Children’s National Hospital.

“This year, the news is especially meaningful, because our teams — like those at hospitals across the country — faced enormous challenges and worked heroically through a global pandemic to deliver excellent care.”

“Even in the midst of a pandemic, children have healthcare needs ranging from routine vaccinations to life-saving surgery and chemotherapy,” said Ben Harder, managing editor and chief of Health Analysis at U.S. News. “The Best Children’s Hospitals rankings are designed to help parents find quality medical care for a sick child and inform families’ conversations with pediatricians.”

The annual rankings are the most comprehensive source of quality-related information on U.S. pediatric hospitals. The rankings recognize the nation’s top 50 pediatric hospitals based on a scoring system developed by U.S. News. The top 10 scorers are awarded a distinction called the Honor Roll.

The bulk of the score for each specialty service is based on quality and outcomes data. The process includes a survey of relevant specialists across the country, who are asked to list hospitals they believe provide the best care for patients with the most complex conditions.

Below are links to the seven Children’s National specialty services that U.S. News ranked in the top 10 nationally:

The other three specialties ranked among the top 50 were cardiology and heart surgery, gastroenterology and gastro-intestinal surgery, and urology.

Marc Levitt

Premier pediatric colorectal program opens doors at Children’s National

Marc Levitt

“With the broad range of expertise at Children’s National, including the nation’s best NICU, I’m confident that colorectal patients will get better, integrated care faster and more effectively here than anywhere else in the world,” says Marc Levitt, M.D.

World-renowned surgeon opens first program for care and treatment of colorectal conditions in the mid-Atlantic.

A new, highly-specialized surgical program at Children’s National Hospital is expected to draw patients from around the world. The colorectal surgery program is the first in the mid-Atlantic region to fully integrate surgery, urology, gynecology and gastroenterology into one cohesive program for children. The program is led by Marc Levitt, M.D., an internationally recognized expert in the surgical care and treatment of pediatric colorectal disorders who has performed over 10,000 surgeries to address a wide spectrum of problems involving the colon and rectum – more than any other full time practicing pediatric surgeon in the world.

“In the 25 years that I’ve been passionate about helping children with colorectal and pelvic conditions, I’ve learned that collaborative and integrated programs are the best way to care for them,” says Dr. Levitt. “With the broad range of expertise at Children’s National, including the nation’s best NICU, I’m confident that colorectal patients will get better, integrated care faster and more effectively here than anywhere else in the world.”

The program provides diagnosis and treatment for every type of colorectal disorder occurring in infants, children and adolescents, from the most common to the most complex. Every necessary specialty is integrated into the program in one convenient location to provide seamless care for all colon and rectum conditions, with particular expertise in:

  • Anorectal malformations
  • Cloacal malformations
  • Chronic constipation and fecal incontinence
  • Fecal and urinary incontinence related to spinal conditions such as spina bifida
  • Hirschsprung disease
  • Motility disorders

“Every child receives a customized treatment plan to address his or her unique needs,” Dr. Levitt says about the program. “Additionally, our surgeons often combine complex procedures across specialties to reduce the number of surgeries a child requires. It isn’t unusual for us to include urology, gynecology, and gastroenterology teams in the operating room alongside the colorectal surgeons so multiple issues can be addressed in a single procedure – we know that when possible, fewer surgeries is always better for the child.”

Dr. Levitt has cared for children from 50 states and 76 countries. He is the founder of Colorectal Team Overseas (CTO), a group of international providers who travel to the developing world to provide care for patients and teaching of their physicians and nurses. He co-founded the Pediatric Colorectal and Pelvic Learning Consortium (PCPLC), an organization of collaborating colorectal centers across the globe.

“We’re absolutely thrilled to welcome Marc Levitt and launch the comprehensive colorectal program under his expert leadership,” adds Anthony Sandler, M.D., surgeon-in-chief and vice president of the Joseph E. Robert, Jr., Center for Surgical Care at Children’s National. “There are few in the world who can provide the expertise and leadership in colorectal diagnoses and treatment that Marc brings with him to Children’s. Many children and families from the region and from around the world will benefit from his expertise and from the program in general.”

alphabet pasta spelling out "gluten free"

Do celiac families need two toasters?

alphabet pasta spelling out "gluten free"

Parents using multiple kitchen appliances and utensils to prevent their child with celiac disease from being exposed to gluten may be able to eliminate some cumbersome steps according to new research.

Parents using multiple kitchen appliances and utensils to prevent their child with celiac disease from being exposed to gluten may be able to eliminate some cumbersome steps. A new, preliminary study from Children’s National Hospital published in the journal Gastroenterology found no significant gluten transfer when tools like the same toaster or knives are used for both gluten-free and gluten-containing foods.

The study authors found that performing these types of kitchen activities using the same kitchen equipment may not pose a high risk of gluten exposure for people with celiac disease. Additionally, basic kitchen hygiene, including routine washing of utensils and equipment with soap and water and handwashing, can further reduce or eliminate gluten transfer.

The authors tested three scenarios where it was thought that gluten transfer could be high enough to pose a gluten exposure risk for someone with celiac disease – in general, greater than 20 parts per million (ppm) or .002%.* However, the study found less gluten transfer than expected in the following scenarios:

  • Toasting bread: Gluten levels remained at less than 20 ppm when gluten-free bread was toasted in the same toaster as regular bread, across repeated tests and even when gluten-containing crumbs were present at the bottom of the toaster.
  • Cupcakes: Gluten levels also remained below 20 ppm in most cases when a knife used to cut frosted gluten-containing cupcakes was then used to cut gluten-free cupcakes, even when visible crumbs were stuck to the icing on the knife.
  • Pasta: Cooking gluten-free pasta in the same water as regular pasta did cause significant gluten transfer, sometimes as high as 115 ppm. However, if the gluten-free pasta was rinsed under running tap water after cooking, the gluten transfer dropped to less than 20 ppm. If the pasta pot was simply rinsed with fresh water before being reused, then gluten transfer was undetectable.

*U.S. Food and Drug Administration regulations allow foods with less than 20 parts per million of gluten to be labeled “gluten-free.” It is not possible to detect zero ppm—the lowest detected level is 3 ppm (.0003%).

“So many celiac parents, including me, have taken every precaution to prevent a gluten exposure in our homes. In many cases that means having two of everything – toasters, knives and pasta pots, with little or no hard evidence showing we needed to,” says Vanessa Weisbrod, executive director of the Celiac Disease Program at Children’s National Hospital, who conceived and led the study. “Though the sample is small, this study gives me hope that someday soon we’ll have empirical evidence to reassure the families we work with that their best defense is not two kitchens – it’s simply a good kitchen and personal hygiene. And, that we can travel to grandma’s house or go on a vacation without worrying about a second toaster.”

“These are areas of the kitchen where today we coach families to exercise an abundance of caution. We still recommend following all guidelines from your celiac care team to prevent cross contamination while we do further study,” adds Benny Kerzner, M.D., the study’s senior author and director of the Celiac Disease Program at Children’s National Hospital. “But the results are compelling enough that it’s time for our larger celiac community to look at the current recommendations with a critical eye and apply evidence-based approaches to pinpoint the true risks for families and eliminate some of the hypervigilant lifestyle changes that we sometimes see after a family receives a celiac diagnosis.”

“This study provides novel data that quantifies the risk of gluten exposure when preparing gluten-free food alongside gluten-containing foods and highlights the need for further study in this area so that recommendations can be evidence-based,” notes Jocelyn Silvester, M.D., Ph.D. FRCPC, director of Research for the Celiac Disease Program at Boston Children’s Hospital who led the study’s biostatistical analysis.

The authors maintain that the most important thing families can do to prevent gluten reaction is practicing simple hygiene steps that include washing pots, pans and kitchen utensils with soap and water after each use (and before using them to prepare gluten-free food) and for all family members to wash their hands with soap and water before preparing gluten-free food.

“The treatment burden of maintaining a strict gluten-free diet has been compared to that of end-stage renal disease, and the partner burden to that of caring for a cancer patient,” says Marilyn G. Geller, chief executive officer of the Celiac Disease Foundation. “This preliminary study is encouraging that this burden may be reduced by scientifically evaluating best practices in avoiding cross-contact with gluten. We congratulate the Children’s National Celiac Disease Program team in taking this important first step in bettering the lives of celiac disease patients and their loved ones.”

Children’s National ranked No. 6 overall and No. 1 for newborn care by U.S. News

Children’s National in Washington, D.C., is the nation’s No. 6 children’s hospital and, for the third year in a row, its neonatology program is No.1 among all children’s hospitals providing newborn intensive care, according to the U.S. News Best Children’s Hospitals annual rankings for 2019-20.

This is also the third year in a row that Children’s National has been in the top 10 of these national rankings. It is the ninth straight year it has ranked in all 10 specialty services, with five specialty service areas ranked among the top 10.

“I’m proud that our rankings continue to cement our standing as among the best children’s hospitals in the nation,” says Kurt Newman, M.D., President and CEO for Children’s National. “In addition to these service lines, today’s recognition honors countless specialists and support staff who provide unparalleled, multidisciplinary patient care. Quality care is a function of every team member performing their role well, so I credit every member of the Children’s National team for this continued high performance.”

The annual rankings recognize the nation’s top 50 pediatric facilities based on a scoring system developed by U.S. News. The top 10 scorers are awarded a distinction called the Honor Roll.

“The top 10 pediatric centers on this year’s Best Children’s Hospitals Honor Roll deliver outstanding care across a range of specialties and deserve to be nationally recognized,” says Ben Harder, chief of health analysis at U.S. News. “According to our analysis, these Honor Roll hospitals provide state-of-the-art medical expertise to children with rare or complex conditions. Their rankings reflect U.S. News’ assessment of their commitment to providing high-quality, compassionate care to young patients and their families day in and day out.”

The bulk of the score for each specialty is based on quality and outcomes data. The process also includes a survey of relevant specialists across the country, who are asked to list hospitals they believe provide the best care for patients with challenging conditions.

Below are links to the five specialty services that U.S. News ranked in the top 10 nationally:

The other five specialties ranked among the top 50 were cardiology and heart surgery, diabetes and endocrinology, gastroenterology and gastro-intestinal surgery, orthopedics, and urology.

Kinsley and Dr. Timothy Kane

Case study: Diagnosing a choledochal cyst in utero

Kinsley and Dr. Timothy Kane

The Feigel family worked with Timothy Kane, M.D., the division chief of general and thoracic surgery at Children’s National, to ensure an accurate diagnosis, coordinate a corrective procedure and support a strong recovery for Kinsley, who just celebrated a 5-month milestone.

On Sept. 30, 2018, Elizabeth Feigel gave birth to a healthy baby girl, Kinsley Feigel. Thirty-two days later, Elizabeth and her husband, Steven Feigel, delighted in another hospital moment: Kinsley, who developed a choledochal cyst in utero, was recovering from a surgical procedure to remove an abnormal bile duct cyst, which also required the removal of her gallbladder.

While the series of events, interspersed with multiple hospital visits, would likely create uneasiness in new parents, the Feigel family worked with Vahe Badalyan, M.D., a gastroenterologist at Children’s National Health System, and with Timothy Kane, M.D., the division chief of general and thoracic surgery at Children’s National, to ensure an accurate diagnosis, coordinate a corrective procedure and support a strong recovery for Kinsley, who just celebrated a 5-month milestone.

One of the keys to Kinsley’s success was close communication between her parents and providers.

Dr. Badalyan and Dr. Kane listened to Elizabeth and Steven’s concerns, explained complex medical terms in lay language, and provided background about Kinsley’s presenting symptoms, risk factors and procedures. Instead of second-guessing the diagnosis, Elizabeth and Steven put their trust into and remained in contact with the medical team, sharing updates about Kinsley at home. This parent-physician partnership helped ensure an accurate diagnosis and tailored treatment for Kinsley.

Here is her story.

An early diagnosis

During a 12-week prenatal ultrasound, Elizabeth discovered that Kinsley had an intra-abdominal cyst. Before Elizabeth came to Children’s National for an MRI, she met with several fetal medicine specialists and had a variety of tests, including an amniocentesis to rule out chromosomal abnormalities, such as Down syndrome.

The team at Children’s National didn’t want to prematurely confirm Kinsley’s choledochal cyst in utero, but additional ultrasounds and an MRI helped narrow the diagnosis to a few conditions.

After Kinsley was born, and despite looking like a healthy, full-term baby, she was transported to the neonatal intensive care unit (NICU) at Children’s National. Dr. Badalyan and Dr. Kane analyzed Kinsley’s postnatal sonogram and found the cyst was bigger than they previously thought. Over a five-day period, the medical team kept Kinsley under their close watch, running additional tests, including an additional sonogram. They then followed up with Kinsley on an outpatient basis to better understand and diagnose her cyst.

Outpatient care

Over the next few weeks, Kinsley, Elizabeth and Steven returned to Children’s National to coordinate multiple exams, ranging from an MRI to a HIDA scan. During this period, Elizabeth and Steven remained in contact with Dr. Badalyan. They heard about Kinsley’s lab results and sent updates about her symptoms, including her stool, which helped the medical team monitor her status.

Meanwhile, Dr. Badalyan and Dr. Kane worked closely with the lab to measure Kinsley’s bilirubin levels. Her presenting symptoms and risk factors, she had jaundice and is a female baby of Asian descent, are associated with both choledochal cysts and biliary atresia.

Over time and with the help of Elizabeth, Steven and the pediatric radiologists, Dr. Badalyan and Dr. Kane confirmed Kinsley had a type 1 choledochal cyst, the most common. Originally, the plan was to operate at three to six months, but Dr. Kane needed to expedite the procedure and operate on Kinsley at one month due to a rise in her bilirubin, a sign of progressive liver disease.

Higher bilirubin levels are common in newborns and remain elevated at about 5 mg/dL after the first few days of birth, but Kinsley’s levels peaked and remained elevated. Instead of her bile flowing into her intestine, her choledochal cyst reduced the flow of bile, which accumulated and started to pour back into her liver. The timing of the surgery was as important as the procedure.

The surgery

On Oct. 31, Halloween, Kinsley had laparoscopic surgery to remove the choledochal cyst. Approximately five to seven patients per year undergo choledochal cyst removal at Children’s National. Smaller infants typically undergo removal of a choledochal cyst using a large incision (or open procedure). Kinsley was the smallest baby at Children’s National to have this type of surgery performed by minimally invasive laparoscopic surgery, which required a few 3-mm incisions – the size of coriander seeds.

Some hospitals use the da Vinci robot, which starts at 8-mm incisions, the size of a small pearl, to conduct this procedure on infants, but this method cannot effectively be done in very small infants. Instead, Dr. Kane prefers to stitch sutures by hand. This technique keeps the incisions small and is technically demanding, but Dr. Kane doesn’t mind (he views this as an advanced technical skill). The goal for this surgery was to cut out the abnormal piece of Kinsley’s common bile duct, comprised of the cyst, remove  this and then sew the bile duct to the small intestine (duodenum), creating a digestive pathway. The new digestive tube allows for bile to flow from her liver through the common hepatic duct, in place of the pathway where the cyst formed, and into her intestine.

Like other surgeries, Dr. Kane needed to adapt the procedure, especially with Kinsley’s size: Taking too much from the bile duct would create a tight space, and could create obstruction, blocking bile, while leaving too much room could create leakage and spilling of the bile, requiring a follow-up surgical procedure within a week or two of the original operation.

Dr. Kane had a few options in mind before he operated. He didn’t know which would be most suitable until the operation, but he remained open and prepared for all three. Adopting this mindset, instead of having one procedure in mind, has helped Dr. Kane with precise and tailored surgeries, which often result in the best procedure and a stronger recovery period for young patients.

After 4.5 hours, the surgery, a two-part procedure – removing the cyst and recreating a functional bile duct – was complete.

Kinsley moved into the recovery unit, where she rested and recovered under close medical supervision for five days. During the first few days, she didn’t have liquids or milk, but she did have two bedside nurses monitoring her status in addition to surgeons making regular rounds. Elizabeth and Steven were relieved: The diagnosis and surgery were over.

Managing risk factors

Before Kinsley left the hospital, Elizabeth and Steven scheduled a follow-up visit to ensure Kinsley was recovering well and avoided risk of infection, such as cholangitis, which can occur suddenly and become chronic.

Following Kinsley’s post-surgical bloodwork in early November, Dr. Badalyan noticed Kinsley’s white blood count was high, signaling infection, and he immediately brought the family back to the hospital. To help her body fight the infection, Kinsley received antibiotics and intravenous fluids. She stayed in the hospital for five days. Fortunately, cholangitis is easy to treat with antibiotics; the key is to detect it early.

Kinsley returned home in time for Thanksgiving. She came back to the hospital for biweekly visits. At this point, she was filling out, reaching a 2-month milestone and nearing a full recovery. She returned for follow-up visits in December and January – and has been healthy ever since. She will continue to make routine visits during her first year to ensure her white blood count remains in a healthy range.

Investing in youth resilience

Dr. Badalyan and Dr. Kane envision a healthy future for Kinsley. They don’t expect she’ll need additional operations. Her parents are also looking on the bright side: Since gallbladders aren’t essential for survival or long-term health outcomes, and since many people can easily live without them, Kinsley may be at an advantage. Elizabeth thinks Kinsley may be more cautious about lifestyle choices to support living without a gallbladder, which also support longevity.

Another perspective noted by Dr. Badalyan and Dr. Kane is Kinsley’s resilience factor. Having the surgery earlier brought unique challenges, but her age makes it easier for Kinsley to bounce back as her body rapidly develops. Her tissues were healthy, compared to adult patients undergoing surgery with chronic liver problems or heart disease, which puts her at an advantage for a faster healing process. Dr. Badalyan also mentions that while it’s good for her Kinsley and her family to continue to monitor risks for infections, she won’t have gallstones.

Elizabeth also started to notice something that Kinsley’s doctors likely wouldn’t pick up on: Her personality seems to be a result of her hospital experience and stay. Kinsley’s an easy baby. She eats well and sleeps well, which Elizabeth credits to being around clinicians and to learning the art of self-soothing, a skill she likely acquired while recovering from surgery.

This month, Kinsley has another adventure. She’ll travel with her parents to visit extended family in Seattle, Napa Valley, Calif. and West Virginia. She has several relatives and family friends, all of whom are looking forward to meeting her.

Girl using smartphone with dad

Children’s National to participate in Hackathon

Girl using smartphone with dad

On March 24, 2019, George Washington University will host their annual George Hacks Medical Hackathon. Among the participants are Seema Khan, M.D., a gastroenterologist, and Kelley Shirron, MSN, CPNP, a nurse practitioner, at Children’s National Health System.

The event is a 24-hour innovation competition at George Washington University that will feature pitches addressing needs for patients battling cancer, medical and social innovation solutions for the aging community and more.

Below, Seema Khan and Kelley Shirron provide insight about the My EoE and BearScope mobile app they are pitching for the competition:

What is the idea surrounding the mobile app you are developing?

We encounter a lot of cases where the patient diagnosis of eosinophilic esophagitis (EoE) and its follow up care are delayed due to a lack of understanding regarding the nature of symptoms, miscommunications related to type of treatment and scheduling as a whole. From the moment the patient visits the doctor to the point of when an endoscopy is scheduled, the process warrants improvement and we believe this mobile app can assist tremendously. The availability of a mobile app like this can make it easier for patients to have better preparation for their procedures.

What are some obstacles that you encounter in relation to endoscopies?

We often experience instances where patients inadvertently violate their NPO (nothing by mouth) order, which results in complete cancellation of their endoscopy procedure. In a case like this, the patient would have to wait another few weeks before they can reschedule an appointment. An NPO violation leads to wasted resources. Mom and Dad took off work, the patient missed school, experienced unnecessary fasting and now they have to do it all over again, resulting in a delay of diagnosis.

How will the mobile app help patients with these issues?

We would like for the mobile app to allow patients to monitor their symptoms, corresponding to their period of treatment. The treatment for our patients is a very important process which requires close adherence. For example, the treatment can be tricky because it resembles the same diet that many kids with food allergies have to adhere to. With this mobile app, the patient could have easy access to that information and identify their food avoidances. The mobile app would identify foods they should avoid in their diet and the seasons they should avoid for scheduling of their scopes due to known seasonal allergies.

How do you envision your patients personally benefitting from the device?

We believe our mobile app can help patients avoid unnecessary pitfalls. For example, the mobile app can incorporate a game or an alarm to remind the patient to drink water or to take their medicine when necessary. A notification can pop up to remind the patient to stop eating and drinking and can detail what that means. Those notifications also include alerts for no gum chewing, hard candies, drinking coffee, etc.

Sometimes patients accidently go to the wrong location. It’s really heartbreaking to experience that because in some cases the patient hasn’t eaten in eight to 12 hours. Many times they’ve endured the pre -colonoscopy “clean out” for those also undergoing a colonoscopy and now we have to reschedule their procedure, all because of a location mix-up. We’re thinking of ways to integrate with WAZE or other navigational apps into this application to help patients coordinate their routes better, which is a helpful feature to have in Washington, D.C. An address of their procedure location could be pre-entered into the mobile app by their provider to avoid location mix-ups. By incorporating this feature, it will help us provide patients with efficient and prompt care.

What excites you about this project?

We’re excited about this because this mobile app could improve the delivery of health care by helping patients and their families identify possible associations between their diet and their symptoms. The content in the app will also help them be better prepared for their diagnostic procedure, and will hopefully reduce last-minute cancellations due to misunderstandings. These capabilities are fun to think about and we’re excited about the creativity that will be incorporated into this project.

Children’s National will also be hosting the 2019 Clinical and Translational Science Institute (CTSI) Healthcare Hackathon on March 29th. The half day hackathon will feature both medical and public health applications developed by participating teams. 

Ian Leibowitz

Ian Leibowitz, M.D., joins Children’s National as Chief of Gastroenterology, Hepatology, and Nutrition Services

Ian Leibowitz

Ian Leibowitz, M.D., an internationally respected expert earning prominence for his focus on improving the care of inflammatory bowel disease for children, joins Children’s National Health System as the chief of Gastroenterology, Hepatology, and Nutrition Services.

Dr. Leibowitz is an elected councilor to the Executive Committee of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASOHAN) and is a member of the Strategic Council and Physicians Leadership Group with ImprovedCareNow, a national collaborative that has created a community of clinicians and researchers that measures outcomes and develops best clinical standards.

Through his work as a highly accomplished pediatric gastroenterologist and his proactive approach to preventing remissions for those suffering from Crohn’s disease and Ulcerative Colitis, Dr. Leibowitz will lead a team of nationally recognized educators, research leaders and specialists to transform clinical care for children by enhancing the patient experience within this division.

Prior to coming to Children’s National, Dr. Leibowitz served as the Chief Medical Officer at Pediatric Subspecialists of Virginia (PSV), worked at the Gastroenterology Associates of Northern Virginia and at Inova Fairfax Hospital as the Chief of Pediatric Gastroenterology.

Dr. Leibowitz received his Medical Degree from St. George’s University of School of Medicine, St. George’s, Grenada, and completed his Residency and Fellowship in Pediatric Gastroenterology at Georgetown University, Washington, D.C. in 1989.

Girl complaining to doctor about stitch in side

Treating children and teens with undiagnosed stomach problems?

Girl complaining to doctor about stitch in side

Children and teens exhibiting symptoms of orthostatic intolerance (OI) or gastrointestinal (GI) distress may benefit from a new diagnostic tool, pairing a tilt table test with manometry, which combines the two fields and can yield better results in some cases than testing for either symptom alone.

A combination of two diagnostic tools to test for cardiovascular and gastrointestinal function provides potential answers for patients left feeling sick and with inconclusive results.

Imagine you’re a pediatrician and see a teenage patient who complains of gastrointestinal (GI) distress: nausea, bloating and abdominal pain. She hasn’t altered her diet or taken new medications. An ultrasound of her internal organs from a radiologist comes back clear. You refer her to a gastroenterologist to see if her GI tract, a tube that runs from her mouth to the bottom of her stomach, and houses many organs, including the esophagus, intestines and stomach, has inflammation or structural anomalies. The symptoms, depending on the severity of the problem, could range from mildly irritating to intrusive, leading to missed days from work or school.

The gastroenterologist may analyze her GI tract with an endoscope and often takes a biopsy to look at a sample of the intestinal lining for lesions and inflammation. The results, like the ultrasound, may come back clear.

While an “all-clear” diagnosis is good news for patients awaiting the results of a test for a disease process, these results frustrate patients with chronic GI problems. Without a definitive diagnosis, these patients and their doctors often worry about ‘missing something’ and are left searching for solutions—and scheduling more tests.

Research published in The Journal of Pediatrics, entitled “Utility of Diagnostic Studies for Upper Gastrointestinal Symptoms in Children with Orthostatic Intolerance,” and discussed on Oct. 24 at the 2018 Single Topic Symposium at the Annual Meeting of the North American Society of Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN), entitled Advances in Motility and in Neurogastroenterology (AIMING) for the future, now provides doctors with preliminary answers and a tool to test for orthostatic intolerance (OI).

The research team, a mix of cardiologists and gastroenterologists from Children’s National Health System, examined consecutive medical records of over 100 children and young adults with OI, a result of insufficient blood flow returning to the heart after standing up from a reclined position, which could result in lightheadedness or fainting, as well as gastrointestinal symptoms, including nausea and vomiting.

All patients had antroduodenal manometry, a test that uses a catheter, placed during an upper GI endoscopy, to measure the motility of the stomach and of the upper small intestines, in conjunction with a tilt-table test to measure blood pressure and heart rate changes with a change in posture. A gastric emptying study (GES) was performed in about 80 percent of the patients. The study found that antroduodenal manometry combined with the tilt-table test provided the best insights into adolescents and young adults with OI and GI symptoms.

Anil Darbari, M.D., MBA, a study author and the director of the comprehensive GI motility program at Children’s National, mentions the research highlights advances in the field of GI motility. It provides insights into the underlying pathophysiology of the conditions affecting the function of the GI tract and a roadmap to offer a multidisciplinary approach to help patients with sensory or motor GI motility problems, including those with OI or postural orthostatic tachycardia syndrome (POTS).

According to the National Institutes of Health, POTS is a form of OI, which affects more than 500,000 Americans, and most cases are diagnosed in women between the ages of 15 and 50. The cause of POTS is unknown but may begin after major surgery, trauma, a viral illness, pregnancy or before menstruation. The goal of treatment is to improve circulation and alleviate associated symptoms, including blurred vision, headaches, shortness of breath, weakness, coldness or pain in the extremities and GI symptoms, such as nausea, cramps and vomiting.

Dr. Darbari mentions that when his team and other GI motility doctors see patients for predominant GI symptoms, the patients may be frustrated because their primary GI providers often cannot find anything  wrong with their GI tracts— based on the routine testing including laboratory studies, radiological tests and endoscopy with biopsy, at least that they can find. Dr. Darbari isn’t surprised since the symptoms of GI distress and POTS often overlap. Nausea is seen in up to 86 percent of OI patients, a number similar to lightheadedness, which affects 87 percent of OI or POTS patients.

“The physicians and GI specialists are frustrated because they can’t find anything wrong so they think the patient is making up these symptoms,” says Dr. Darbari. “It’s a dichotomous relationship between the patient and physician because of the traditional tests, which almost always come back normal. This is where the field of neurogastroenterology or GI motility comes in. We’re able to explain what’s happening based on the function or motility of the GI tract.”

Dr. Darbari mentions that combining these two fields—testing for cardiovascular function and GI motility—provides the science behind these sought-out answers. The problem, and pain that patients feel affects the neuro-gastro part of the intestine, as opposed to appearing as inflammation, lesions or structural damage.

When asked about how this research may change the field of gastroenterology, Dr. Darbari explains that it’s important to continue to study the underlying mechanisms that control these symptoms. More research, especially from the basic science point of view, is needed to look at how the nerves interact with the muscles. He hopes that scientists will look at the nerve and how the nerve is laid out, as well as how the GI function interacts with that of the cardiovascular system.

Understanding this relationship will help gastroenterologists better understand how to manage these conditions. Right now the solutions involve integrative therapy, such as prescribing sensory modulation, which could include pain management, behavior modification, massage therapy, aroma therapy, acupuncture, meditation and/or hypnotherapy, in addition to or in place of medications to decrease sensory perception in the GI tract. The treatment varies for each patient.

The prospect of giving families answers, and continuing to guide treatment based on the best science, is also what motivates Lindsay Clarke, PA-C, a study author and the coordinator of the GI Motility program at Children’s National, to continue to search for solutions.

“I spend a lot of time on the phone with these families between appointments, between visits, and between procedures,” says Clarke. “They have seen other gastroenterologists. They have had GI testing. Nothing comes back to show why they are feeling this way. This research gives them real information. We can now say that your symptoms are real. We’ve found the connection between what you’re feeling and what’s going on inside of your body.”

“It’s a huge quality-of-life issue for these patients,” adds Dr. Darbari about the benefits of having data to guide treatment. “These are often well-appearing kids. People, including medical professionals, often brush off their symptoms because the patients look good. They don’t have lesions or any redness or swelling, compared, for example, to patients with inflammatory bowel disease, who appear unwell or who have clear physical, laboratory and radiological findings. They don’t appear to be broken.”

The study authors note patient dissatisfaction, health care provider frustration, high costs of care and potentially hazardous diagnostic studies often accompany endoscopic and radiologic studies that fail to reveal significant abnormalities.

Clarke envisions that the use of the dual tilt-table test and antroduodenal manometry may also encourage families to explore multidisciplinary treatment earlier on in a patient’s life, such as physical therapy or sensory therapy, to alleviate symptoms and the overall number of outpatient visits. It provides them the understanding to enroll in a multidisciplinary and comprehensive programs, and programs that offer complementary therapies for management of these complex symptoms.

“This study shows that it’s important to look beyond individual organs and to treat the whole child,” says Clarke. “We’re still not sure about which kinds of sensory therapies work best and we don’t want to overstate the aims of integrative treatments, especially since it may vary for each child, but as clinicians we’re looking forward to talking to families about potential solutions, cautiously, as the science unfolds.”

Additional study authors include Lana Zhang, M.D., Jeffrey Moak, M.D., Sridhar Hanumanthaiah, M.B.B.S., and Robin Fabian, R.N., from the Division of Cardiology at Children’s National, John Desbiens, B.S., from the Division of Gastroenterology at Children’s National, and Rashmi D. Sahay, M.D., from the Division of Biostatistics and Epidemiology at Cincinnati Children’s Hospital Medical Center.