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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.

Dr. Andrew Campbell examines a child

Children’s National physicians provide education at 46th Annual Sickle Cell Disease Association of America Convention

Dr. Andrew Campbell examines a child

Andrew Campbell, M.D., presented at the conference on the topics of hydroxyurea (HU) and blood transfusions.

More than 600 researchers, physicians, nurses, social workers and individuals living with sickle cell disease (SCD) and sickle cell trait (SCT) gathered in Baltimore for the 46th Annual National Sickle Cell Disease Association of America (SCDAA) Convention in mid-October. Children’s National physicians Andrew Campbell, M.D., director of the Comprehensive Sickle Cell Program, and Deepika Darbari, M.D., were among the speakers at the four-day convention discussing the latest scientific research and clinical information through seminars, panel discussions and symposiums.

Dr. Campbell presented at the conference on the topics of hydroxyurea (HU) and blood transfusions. He spoke to families about the benefits of HU, explaining how it lowers the percentage of sickle cells in the blood and decreases the overall inflammatory process. He stressed the importance of HU as a medication used in the prevention of SCD and emphasized the potential decrease in organ damage and increased overall survival rate of SCD patients. The importance of minor antigen blood group phenotyping was also discussed, as it can decrease the chance of patients rejecting future blood transfusions by developing new red blood cell antibodies.

“The indications for blood transfusions in the acute ‘ill’ setting can be life-saving and improve oxygen delivery and overall clinical outcomes within sickle cell complications, including acute chest syndrome, stroke and splenic sequestration. Approximately 10 to 15 percent of patients will need monthly blood transfusions for primary (i.e. stroke, patients with abnormal brain vessel TCD velocities >200cm/s) and secondary (i.e. patients with a previous stroke, multiple splenic sequestrations, recurrent priapism, recurrent acute chest syndromes) sickle cell complications,” explains Dr. Campbell.

Dr. Darbari, a hematologist at Children’s National, educated medical colleagues on chronic pain in SCD and emphasized the increase in pain from adolescence to adulthood.

“During childhood, pain in SCD is considered a consequence of discrete episodes of vaso-occlusion.  Such vaso-occlusion is a complex process in which abnormally shaped (so-called ‘sickled’) red blood cells episodically obstruct the microcirculation thereby causing distal ischemia and resultant pain. As patients get older, mechanisms such as peripheral neuropathic or centralization may play important roles in transition and maintenance of chronic pain. It is important to consider underlying mechanisms contributing to pain when managing a patient with SCD,” states Dr. Darbari. She referenced her coauthored and published Analgesic, Anesthetic and Addiction Clinical Trial Translations Innovations Opportunities and Networks (ACTTION)-American Pain Society Taxonomy (AAPT) criteria for classifying chronic pain in SCD and how useful this tool can be for physicians in the treatment of patients with SCD.

Both Drs. Campbell and Darbari shared their expertise on different facets of SCD with families and medical professionals alike. Their impactful work is paving the way for future treatments and pain management techniques for treating patients living with SCD and their families.

ASCAT Conference Attendees

Children’s National represented at ASCAT conference in London

ASCAT Conference Attendees

From left to right: Lisa Thaniel, Ph.D., Brittany Moffitt, Deepika Darbara, M.D., Steven Hardy, Ph.D., Andrew Campbell, M.D., Barbara Speller-Brown, DNP, Stefanie Margulies and Karen Smith-Wong all represented Children’s National at the ASCAT Conference in London.

Deepika Darbari, M.D., Andrew Campbell, M.D., and Steven Hardy, Ph.D., represented Children’s National at the Annual Sickle Cell Disease and Thalassemia (ASCAT) Conference in London in late October. The theme of this year’s conference was Sickle Cell Disease and Thalassemia: Bridging the Gap in Care and Research.

Dr. Darbari, a Children’s National hematologist, was the featured Grand Rounds speaker and led a pain management symposium. Dr. Darbari studies complications of sickle cell disease with an emphasis on pain. She conducts clinical and translational studies to better understand sickle cell pain and its management. She addressed the topics of pain mechanisms and phenotypes in sickle cell disease during her symposium.

Dr. Campbell, Director of the Comprehensive Sickle Cell Disease Program at Children’s National, has served on the steering committee for this annual international conference for the past two years, working alongside colleagues from across the globe to bring together multiple experts who work with children with blood disorders. Dr. Campbell remarks, “I’m pleased to promote and be a part of [this conference] because it’s one of the best sickle cell/thalassemia conferences in the world pushing the field forward with international representation.” He spoke at the conference during Dr. Darbari’s symposium, discussing sickle cell disease pain around the globe.

Dr. Hardy, a pediatric psychologist in the divisions of Blood and Marrow Transplant, Blood Disorders (Hematology) and Oncology and the Center for Cancer and Blood Disorders at Children’s National, also presented at the conference on his abstract “Computerized Working Memory Training Improves Cognition in Youth with Sickle Cell Disease.” His abstract received the Best Oral Abstract Award at the conference and was awarded a 500 pound prize. In his work at Children’s National, Dr. Hardy provides evidence-based psychological assessments and treatments for children with cancer, sickle cell disease and other blood disorders, as well as those patients undergoing bone marrow transplants.

Poster presentations were also given by Barbara Speller Brown, NP, DNP, Lisa Thaniel, MSW, Ph.D., Brittany Moffitt, MSW, and Stefanie Margulies, senior clinical research coordinator, all representing Children’s National at the ASCAT Conference.

American Society of Hematology logo

Leading blood disorder experts from Children’s National convene in Atlanta for 59th American Society of Hematology annual meeting

In early December 2017, more than 25,000 attendees from around the world, including several experts from Children’s National Health System, convened in Atlanta for the American Society of Hematology’s annual meeting and exposition, the world’s premiere hematology event. For four days, physicians, nurses and other healthcare professionals attended sessions, listened to speakers and collaborated with each other, focusing on enhancing care and treatment options for patients with blood disorders and complications, including leukemia, sickle cell disease and transplants.

As nationally recognized leaders in the field, the Children’s National team led educational sessions and gave keynote speeches highlighting groundbreaking work underway at the hospital, which sparked engaging and productive conversations among attendees. Highlights from the team include:

  • Catherine Bollard, M.D., M.B.Ch.B., Director of the Center for Cancer and Immunology Research, educating global experts on cellular immunotherapy for non-Hodgkin lymphoma.
  • Kirsten Williams, M.D., bone and marrow transplant specialist, presenting novel work utilizing TAA-specific T cells for hematologic malignancies with Dr. Bollard, the sponsor of this first-in-man immunotherapy; moderating sessions on immunotherapy and late complications and survivorship after hematopoietic stem cell transplantation (HSCT).
  • Allistair Abraham, M.D., blood and marrow transplantation specialist, moderating a session on hemoglobinopathies.
  • David Jacobsohn, M.D., ScM, Division Chief of Blood and Marrow Transplantation, moderating a session on allogeneic transplantation results.
  • Naomi Luban, M.D., hematologist and laboratory medicine specialist, introducing a plenary speaker on the application of CRISPR/Cas 9 technology for development of diagnostic reagents for diagnosis of alloimmunization from stem cells.

Additional presentations from the Children’s National team included an oral abstract on the hospital’s work to improve hydroxyurea treatment for sickle cell disease by pediatric resident Sarah Kappa, M.D., who also received an ASH Abstract Achievement Award; another key session on hemoglobinopathies moderated by Andrew Campbell, M.D., director of the Comprehensive Sickle Cell Disease Program; an abstract on the clinical use of CMV- specific T-cells derived from CMV-native donors, presented by Patrick Hanley, Ph.D.; a leukemia study presented by Anne Angiolillo, M.D., oncologist; and a presentation about pain measurement tools in sickle cell disease by Deepika Darbari, M.D., hematologist.

Visit the ASH website to learn more about the conference attendees and their research.

Photo of patient walking through the hallways

Cardiovascular and GI symptom relief

Photo of patient walking through the hallways

By adding antroduodenal manometry to the cardiovascular tilt table test, doctors in the GI Motility Program are able to collaborate with cardiologists to treat both cardiovascular and gastroenterological symptoms in children with complex orthostatic intolerance.

Physicians treating pediatric patients with complex orthostatic intolerance issues often face a double whammy – the children exhibit symptoms of their cardiovascular condition, but secondary issues relating to gastrointestinal functions are also common. That’s why cardiologists and gastroenterologists at Children’s National Health System have collaborated in recent years to diagnose and find comprehensive treatment solutions for patients with conditions such as neurally mediated hypotension (NMH) and postural orthostatic tachycardia syndrome (POTS).

Their innovative team approach was highlighted in a study of their first 35 patients from age 10-23, published in the Journal of Pediatric Gastroenterology and Nutrition last fall – patients who experienced relief for multiple symptoms thanks to treatment at Children’s National.

The collaboration is possible because of the advancements in gastroenterological diagnostics here – specifically related to the comprehensive GI Motility testing. While patients with POTS can exhibit an abnormal heart rate, low blood pressure, headaches, fatigue or weight loss, their gastroenterological symptoms like nausea and constipation are often under recognized, says Children’s Director of the Comprehensive GI Motility Program Anil Darbari, M.D., MBA, who co-authored the study with a team including Jeffrey Moak, M.D., Director of the Electrophysiology Program at Children’s.

Through antroduodenal manometry of the stomach and upper small intestine, in combination with the cardiovascular tilt table test, the team has been able to more accurately diagnose and treat these patients.

“We have the ability to do them together, thereby making the connection between these two conditions and providing a path for management or treatment,” Dr. Darbari said.

Typically, by the time he sees these patients, those with complex medical issues have often seen several other gastroenterologists at multiple centers, and have been through a lot. The study found that overall, antroduodenal manometry was abnormal in 26 of 35 (74%) patients either at baseline or during tilt table testing in subjects with orthostatic intolerance. Darbari and his colleagues concluded that upper GI motility studies should always be part of the comprehensive evaluation for this population of patients, because treating the autonomic condition improved their gastroenterological symptoms as well.

What does the future look like for this double-whammy approach?

“We have a cohort of over 100 patients with these issues who have been evaluated using this combined diagnostic approach,” Dr. Darbari said. “This gives the team the knowledge and opportunity to help even more kids, which is very rewarding.”

In addition to comprehensive assessment and medical approaches, Children’s National is home to leaders in minimally invasive laparoscopic and endoscopic diagnostic and corrective procedures that have enabled Children’s GI motility specialists and the teams they collaborate with to offer the next level of comprehensive pediatric medical care.