Meetings

Vittorio Gallo

Neurodevelopmental disorders: Developing medical treatments

Vittorio Gallo

Vittorio Gallo, Ph.D., Chief Research Officer, participates in the world’s largest general scientific gathering, leading panelists in a timely conversation about progress made so far with neurodevelopmental disorders and challenges that lie ahead.

The human brain is the body’s operating system. Imagine if rogue code worked its way into its hardware and software, delaying some processes, disrupting others, wreaking general havoc.

Neurodevelopmental disorders are like that errant code. They can occur early in life and impact brain development for the rest of the person’s life. Not only can fundamental brain development go awry, processes that refine the brain also can become abnormal, creating a double neural hit.  Adding to those complications, children with neurodevelopmental disorders like autism spectrum disorder (ASD) and Fragile X syndrome often contend with multiple, overlapping cognitive impairments and learning disabilities.

The multiple layers of complexities for these disorders can make developing effective medical treatments particularly challenging, says Vittorio Gallo, Ph.D., Chief Research Officer at Children’s National Health System and recipient of a coveted Senator Jacob Javits Award in the Neurosciences.

During the Feb. 16, 2019, “Neurodevelopmental Disorders: Developing Medical Treatments” symposium, Gallo will guide esteemed panelists in a timely conversation about progress made so far and challenges that lie ahead during the AAAS Annual Meeting in Washington, the world’s largest general scientific gathering.

“This is a very important symposium; we’re going to put all of the open questions on the table,” says Gallo. “We’re going to present a snapshot of where the field is right now: We’ve made incredible advances in developmental neuroscience, neonatology, neurology, diagnostic imaging and other related fields. The essential building blocks are in place. Where are we now in developing therapeutics for these complex disorders?”

For select disorders, many genes have been identified, and each new gene has the potential to become a target for improved therapies. However, for other neurodevelopmental disorders, like ASD, an array of new genes continue to be discovered, leaving an unfinished picture of which genetic networks are of most importance.

Gallo says the assembled experts also plan to explore major research questions that remain unanswered as well as how to learn from past experiences to make future studies more powerful and insightful.

“One topic up for discussion will be new preclinical models that have the potential to help in identifying specific mechanisms that cause these disorders. A combination of genetic, biological, psychosocial and environmental risk factors are being combined in these preclinical models,” Gallo says.

“Our studies of the future need to move beyond describing and observing in order to transform into studies that establish causality between the aberrant developmental processes and these constellations of neurodevelopmental disorders.”

Randi Streisand

Randi Streisand, Ph.D. to be honored with the Michael C. Roberts Award for Outstanding Mentorship

Randi Streisand

Randi Streisand, Ph.D., chief of Psychology and Behavioral Health at Children’s National Health System, will be honored with the Michael C. Roberts Award for Outstanding Mentorship by the  Society of Pediatric Psychology (SPP), a Division of the American Psychological Association. This award honors pediatric psychology faculty who go above and beyond to mentor students and provide professional advice and guidance through students’ various training phases.

The Society of Pediatric Psychology will present the award at their Annual Conference held on Apr. 4-6, 2019 in New Orleans, La.

Streisand was selected for the award based on her exceptional mentorship in the areas of research, clinical work and overall career development through graduate school, postdoctoral fellowships and early career stages.

“I’m very honored to be selected for this distinguished award,” says Streisand. “Working with students, fellows and junior faculty members has been the highlight of my career. I really enjoy helping guide people on their own career paths. I have been fortunate to mentor many truly talented individuals, several of whom I now get to work with as valued colleagues.”

Streisand has served as a primary mentor on funded career development awards, research fellowships and dissertations. Her impressive track record of mentoring behavioral researchers has benefited six faculty members by moving Children’s fellows into tenure-track and clinical faculty positions. Furthermore, her research assistants have been accepted into leading graduate programs in psychology and health including the University of Florida, Loyola University Chicago, Georgia State University and UT Southwestern Medical Center.

“Dr. Streisand’s approach to mentorship is comprehensive, and she goes the extra mile for each intern, colleague and researcher she works with,” says Roger J. Packer, M.D., senior vice president at Children’s Center of Neuroscience and Behavioral Medicine. “She has already made a major impact on the field of pediatric psychology through her superb mentorship and will continue to do so for the years to come.”

mitochondria

Treating nephrotic-range proteinuria with tacrolimus in MTP

mitochondria

Mitochondria are the cell’s powerplants and inside them the MTP enzymatic complex catalyzes three steps in beta-oxidation of long-chain fatty acids.

In one family, genetic lightning struck twice. Two sisters were diagnosed with mitochondrial trifunctional protein (MTP) deficiency. This is a rare condition that stops the body from converting fats to energy, which can lead to lactic acidosis, recurrent breakdown of muscle tissue and release into the bloodstream (rhabdomyolysis), enlarged heart (cardiomyopathy) and liver failure.

Mitochondria are the cell’s powerplants and inside them the MTP enzymatic complex catalyzes three steps in beta-oxidation of long-chain fatty acids. MTP deficiency is so rare that fewer than 100 cases have been reported in the literature says Hostensia Beng, M.D., who presented an MTP case study during the American Society of Nephrology’s Kidney Week.

The 7-month-old girl with known MTP deficiency arrived at Children’s National lethargic with poor appetite. Her laboratory results showed a low corrected serum calcium level, elevated CK level and protein in the urine (proteinuria) at a nephrotic range. The infant was treated for primary hypoparathyroidism and rhabdomyolysis.

Even though the rhabdomyolysis got better, the excess protein in the girl’s urine remained at worrisome levels. A renal biopsy showed minimal change disease and foot process fusion. And electron microscopy revealed shrunken, dense mitochondria in visceral epithelial cells and endothelium.

“We gave her tacrolimus, a calcineurin inhibitor that we are well familiar with because we use it after transplants to ensure patient’s bodies don’t reject the donated organ. By eight months after treatment, the girl’s urine protein-to-creatinine (uPCR) ratio was back to normal. At 35 months, that key uPCR measure rose again when tacrolimus was discontinued. When treatment began again, uPCR was restored to normal levels one month later,” Dr. Beng says.

The girl’s older sister also shares the heterozygous deletion in the HADHB gene, which provides instructions for making MTP. That missing section of the genetic how-to guide was predicted to cause truncation and loss of long-chain-3-hydroxyacl CoA dehydrogenase function leading to MTP deficiency.

The older sister was diagnosed with nephrotic syndrome and having scar tissue in the kidney’s filtering unit (focal segmental glomerulosclerosis) when she was 18 months old. By contrast, she developed renal failure and progressed to end stage renal disease at 20 months of age.

“Renal involvement has been reported in only one patient with MTP deficiency to date, the older sister of our patient,” Dr. Beng adds.

Podocytes are specialized cells in the kidneys that provide a barrier, preventing plasma proteins from leaking into the urine. Podocytes, however, need energy to function and are rich in mitochondria.

“The proteinuria in these two sisters may be related to their mitochondrial dysfunction. Calcineurin inhibitors like tacrolimus have been reported to reduce proteinuria by stabilizing the podocyte actin cytoskeleton. Tacrolimus was an effective treatment for our patient, who has maintained normal renal function, unlike her sister,” Dr. Beng says.

American Society of Nephrology’s Kidney Week presentation

  • “Treatment of nephrotic-range proteinuria with tacrolimus in mitochondrial trifunctional protein deficiency

Hostensia Beng, M.D., lead author; Asha Moudgil, M.D., medical director, transplant, and co-author; Sun-Young Ahn, M.D., MS, medical director, nephrology inpatient services, and senior author, all of Children’s National Health System.

Roger Packer

Roger J. Packer, M.D. presents keynote address for BRAIN 2019

Roger Packer

2019 Otto Lien Da Wong visiting professor in neuro-oncology at BRAIN 2019, Roger J. Packer, M.D. presented the keynote address.

 

More than 400 neurologists, neurosurgeons, pathologists, pediatricians, clinical and basic scientists gathered in Hong Kong for Brain 2019, a conjoint congress of the 3rd Asian Central Nervous System Germ Cell Tumour Conference (CNSGCT), the 9th Interim Meeting of the International Chinese Federation of Neurosurgical Sciences (ICFNS) and the 16th Asia Pacific Multidisciplinary Meeting for Nervous System Diseases (BRAIN) which is also jointly organized by The Chinese University of Hong Kong. This three-day convention discussed advances in pediatric neuro-oncology and neuro-rehabilitation.

Invited as the 2019 Otto Lien Da Wong (OLDW) visiting professor in neuro-oncology, Roger J. Packer, M.D., senior vice president for the Center of Neuroscience and Behavioral Medicine and director at the Gilbert Neurofibromatosis and Brain Tumor Institutes, presented a keynote address titled “Advances in Pediatric Brain Tumors.” Established in 2009, the purpose of the visiting professorship is to advance surgical knowledge and techniques in neuro-oncology between Hong Kong and major medical centers around the world. Dr. Packer was selected from an international field of acclaimed academic surgeons and scholars in the field of neuro-oncology. Two additional presentations included “Pediatric Brain Tumors in Molecular Era: Germ Cell Tumors” as an invited guest of the BRAIN conference and a presentation on “Treatment of Medulloblastoma and PNET” as a session presented by the ICFNS.

In addition to his presentations, Dr. Packer will participate in surgical teaching and scholastic exchange with local surgeons, surgical trainees and medical students.

Preemie Baby

Getting micro-preemie growth trends on track

Preemie Baby

According to Children’s research presented during the Institute for Healthcare Improvement 2018 Scientific Symposium, standardizing feeding practices – including the timing for fortifying breast milk and formula with essential elements like zinc and protein – improves growth trends for the tiniest preterm infants.

About 1 in 10 infants is born before 37 weeks gestation. These premature babies have a variety of increased health risks, including deadly infections and poor lung function.

Emerging research suggests that getting their length and weight back on track could help. According to Children’s research presented during the Institute for Healthcare Improvement 2018 Scientific Symposium, standardizing feeding practices – including the timing for fortifying breast milk and formula with essential elements like zinc and protein – improves growth trends for the tiniest preterm infants.

The quality-improvement project at Children’s National Health System targeted very low birth weight infants, who weigh less than 3.3 pounds (1,500 grams) at birth. These fragile infants are born well before their internal organs, lungs, brain or their digestive systems have fully developed and are at high risk for ongoing nutritional challenges, health conditions like necrotizing enterocolitis (NEC) and overall poor development.

The research team measured progress by tracking the micro-preemies’ mean delta weight Z-score for weight gain, which measures nutritional status.

“In this cohort, mean delta weight Z-scores improved by 43 percent, rising from -1.8 to the goal of -1.0, when we employed an array of interventions. We saw the greatest improvement, 64 percent, among preterm infants who had been born between 26 to 28 weeks gestation,” says Michelande Ridoré, MS, Children’s NICU quality-improvement program lead who presented the group’s preliminary findings. “It’s very encouraging to see improved growth trends just six months after introducing these targeted interventions and to maintain these improvements for 16 months.”

Within Children’s neonatal intensive care unit (NICU), micro-preemies live in an environment that mimics the womb, with dimmed lighting and warmed incubators covered by blankets to muffle extraneous noise. The multidisciplinary team relied on a number of interventions to improve micro-preemies’ long-term nutritional outcomes, including:

  • Reducing variations in how individual NICU health care providers approach feeding practices
  • Fortifying breast milk (and formula when breast milk was not available), which helps these extra lean newborns add muscle and strengthen bones
  • Early initiation of nutrition that passes through the intestine (enteral feeds)
  • Re-educating all members of the infants’ care teams about the importance of standardized feeding and
  • Providing a decision aid about feeding intolerance.

Dietitians were included in the daily rounds, during which the multidisciplinary team discusses each infant’s care plan at their room, and used traffic light colors to describe how micro-preemies were progressing with their nutritional goals. It’s common for these newborns to lose weight in the first few days of life.

  • Infants in the “green” zone had regained their birth weight by day 14 of life and possible interventions included adjusting how many calories and protein they consumed daily to reflect their new weight.
  • Infants in the “yellow” zone between day 15 to 18 of life remained lighter than what they weighed at birth and were trending toward lower delta Z-scores. In addition to assessing the infant’s risk factors, the team could increase calories consumed per day and add fortification, among other possible interventions.
  • Infants in the “red” zone remained below their birth weight after day 19 of life and recorded depressed delta Z-scores. These infants saw the most intensive interventions, which could include conversations with the neonatologist and R.N. to discuss strategies to reverse the infant’s failure to grow.

Future research will explore how the nutritional interventions impact newborns with NEC, a condition characterized by death of tissue in the intestine. These infants face significant challenges gaining length and weight.

Institute for Healthcare Improvement 2018 Scientific Symposium presentation

  • “Improved growth of very low birthweight infants in the neonatal intensive care unit.”

Caitlin Forsythe, MS, BSN, RNC-NIC, NICU clinical program coordinator, Neonatology, and lead author; Michelande Ridoré, MS, NICU quality-improvement program lead; Victoria Catalano Snelgrove, RDN, LD, CNSC, CLC, pediatric clinical dietitian; Rebecca Vander Veer, RD, LD, CNSC, CLC, pediatric clinical dietitian; Erin Fauer, RDN, LD, CNSC, CLC, pediatric clinical dietitian; Judith Campbell, RNC, IBCLC, NICU lactation consultant; Eresha Bluth, MHA, project administrator; Anna Penn, M.D., Ph.D., neonatologist; Lamia Soghier, M.D., MEd, Medical Unit Director, Neonatal Intensive Care Unit; and Mary Revenis, M.D., NICU medical lead on nutrition and senior author; all of Children’s National Health System.

Megan Young

Orthopaedic Surgeon named 2019 LLRS Traveling Fellow

Megan Young

Megan Young, M.D.

Megan Young, M.D., has been named a 2019 Limb Lengthening and Reconstruction Society (LLRS) Traveling Fellow.

The fellowship provides leading education in limb lengthening and reconstruction, trains future leaders of LLRS and establishes mentor relationships between current society members and new surgeons.

“We are beyond proud that Dr. Young was selected for this highly competitive opportunity,” says Matthew Oetgen, M.D., chief of Orthopaedics and Sports Medicine. “This is only the latest recognition Dr. Young has received for her growing expertise in limb lengthening and complex lower extremity reconstructions.”

During her fellowship in August 2019, Dr. Young will travel to multiple limb lengthening and reconstruction surgical centers to share ideas and exchange best practices with orthopaedic surgeons at every career stage – from trainees to seasoned veterans. She will present her key takeaways from the experience at the society’s 2020 annual meeting.

Dr. Young has a special interest in caring for children with lower extremity deformity and limb length discrepancies and has developed a Limb Lengthening program at Children’s, which offers patients and their families comprehensive treatment options for these complex conditions using leading edge technology.

Lactobacillis-Bacteria

Does ZIP code factor into genitourinary system health?

Lactobacillis-Bacteria

Clinicians suspect that taking probiotics, such as lactobacillus supplements, and making changes to diet may prevent urinary diseases that occur commonly among pediatric patients. A research team led by Children’s faculty is exploring whether changes in the built environment also affect the urinary microbiome.

Emerging evidence suggests that the variety and volume of bacteria that reside in the bladder – the urinary microbiome – significantly impact whether people’s genitourinary systems remain healthy or become susceptible to disease.

Already, clinicians suspect that taking probiotics and making changes to diet may prevent urinary diseases that occur commonly among pediatric patients. A research team led by Children’s faculty is exploring whether changes in the built environment also affect the urinary microbiome.

Using experimental models, they looked at how stable the urinary microbiome was over time. Then, they measured the potential effect of changing the built environment on the urinary microbiome of preclinical models.

They did this by following six C57BL/6 experimental models for five months, starting from when they were nine weeks old. They collected urine specimens when the study began and repeated sample collections each month. The multidisciplinary team isolated microbial DNA from these specimens to determine the makeup of the bacterial community present in their urinary tracts.

All of the experimental models shared a single cage, drank the same water and ate the exact same chow. At four months, however, they moved the preclinical models to a different facility within the same county. Their chow and bedding remained unchanged, but the water source changed since they received tap water at both locations.

“There were no changes in the proportion of specific bacteria in the urinary microbiomes from month zero through month five, which means the urinary microbiomes of healthy experimental models remain stable over time,” says Michael Hsieh, M.D., Ph.D., a urologist at Children’s National Health System and senior author of the work presented during the Pediatric Urology Fall Conference. “However, the convergence of the Shannon Diversity Index, the clustering seen on Principal coordinate analyses and changes in functional analyses taken as a whole suggest that an overall shift of the urinary microbiome occurred due to a change in the physical environment.”

This work suggests that where patients live could influence which bacteria grow in the urinary tracts, including during urinary tract infections.

The Societies for Pediatric Urology’s Pediatric Urology Fall Conference

  • “Effects of time and the built environment on the stability of the mouse urinary microbiome: implications for clinical utility.”

Catherine S. Forster, M.D., MS, pediatric hospitalist, Children’s National; James Cody, Ph.D., Biomedical Research Institute; Nirad Banskota, MS, Biomedical Research Institute; Crystal Stroud, MS, Children’s National; Ljubica Caldovic, Ph.D., principal investigator, Children’s National; and Michael Hsieh, M.D., Ph.D., urologist, Children’s National.

new mom with baby

Fighting perinatal mood and anxiety disorders on multiple levels

new mom with baby

Over the past several decades, it’s become increasingly recognized that perinatal mood and anxiety disorders (PMADs), including postpartum depression, are more than just “baby blues.” They’re the most common complication of childbirth in the U.S., affecting about 14 percent of women in their lifetimes and up to 50 percent in some specific populations. PMADs can lead to a variety of adverse outcomes for both mothers and their babies, including poor breastfeeding rates, poor maternal-infant bonding, lower infant immunization rates and maternal suicides that account for up to 20 percent of postpartum deaths.

But while it’s obvious that PMADs are a significant problem, finding a way to solve this issue is far from clear. In a policy statement published December 2018 in the journal Pediatrics, the American Academy of Pediatrics recommends that pediatric medical homes coordinate more effectively with prenatal providers to ensure PMAD screening occurs for new mothers at well-child checkups throughout the first several weeks and months of infancy and use community resources and referrals to ensure women suffering with these disorders receive follow-up treatment.

To help solve the huge issue of PMADs requires a more comprehensive approach, suggests Lenore Jarvis, M.D., MEd, an emergency medicine specialist at Children’s National Health System. A poster that Dr. Jarvis and colleagues from Children’s Perinatal Mental Health Taskforce recently presented at the American Academy of Pediatrics 2018 National Convention and Exhibit in Orlando, Florida, details the integrated care to help women with PMADs that originated at Children’s National and is being offered at several levels, including individual, interpersonal, organizational, community and policy. The poster was ranked best in its section for the Council on Early Childhood.

At the base level of care for mothers with possible PMADs, Dr. Jarvis says, are the one-on-one screenings that take place in primary care clinics. Currently, all five of Children’s primary care clinics screen for mental health concerns at annual visits. At the 2-week, 1-, 2-, 4- and 6-month visits, mothers are screened for PMADs using the Edinburgh Postnatal Depression Scale, a validated tool that’s long been used to gauge the risk of postpartum depression. In addition, recent studies at Children’s neonatal intensive care unit (NICU) and emergency department (ED) suggest that performing PMAD screenings in these settings as well could help catch even more women with these disorders: About 45 percent of parents had a positive screen for depression at NICU discharge, and about 27 percent of recent mothers had positive screens for PMADs in the ED.

To further these efforts, Children’s National recently started a Perinatal Mental Health Taskforce to promote multidisciplinary collaboration and open communication with providers among multiple hospital divisions. This taskforce is working together to apply lessons learned from screening in primary care, the NICU and the ED to discuss best practices and develop hospital-wide recommendations. They’re also sharing their experiences with hospitals across the country to help them develop best practices for helping women with PMADs at their own institutions.

Furthering its commitment to PMAD screening, Children’s National leadership set a goal of increasing screening in primary care by 15 percent for fiscal year 2018 – then exceeded it. Children’s National is also helping women with PMADs far outside the hospital’s walls by developing a PMAD screening toolkit for other providers in Washington and across the country and by connecting with community partners through the DC Collaborative for Mental Health in Pediatric Primary Care. In April 2019, the hospital will host a regional perinatal mental health conference that not only will include its own staff but also staff from other local hospitals and other providers who care for new mothers, including midwives, social workers, psychologists, community health workers and doulas.

Finally, on a federal level, Dr. Jarvis and colleagues are part of efforts to obtain additional resources for PMAD screening, referral and treatment. They successfully advocated for Congress to fully fund the Screening and Treatment for Maternal Depression program, part of the 21st Century Cures Act. And locally, they provided testimony to help establish a task force to address PMADs in Washington.

Together, Dr. Jarvis says, these efforts are making a difference for women with PMADs and their families.

“All this work demonstrates that you can take a problem that is very personal, this individual experience with PMADS, and work together with a multidisciplinary team in collaboration to really have an impact and promote change across the board,” she adds.

In addition to Dr. Jarvis, the lead author, Children’s co-authors include Penelope Theodorou, MPH; Sarah Barclay Hoffman, MPP, Program Manager, Child Health Advocacy Institute; Melissa Long, M.D.; Lamia Soghier M.D., MEd, NICU Medical Unit Director; Karen Fratantoni M.D., MPH; and Senior Author Lee Beers, M.D., Medical Director, Municipal and Regional Affairs, Child Health Advocacy Institute.

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.

CASD Posters

Bridging gaps in autism care through technology

CASD Posters

CASD Faculty Member and Clinical Psychologist, Dr. Allison Ratto (top left); Postdoctoral Fellow, Dr. Marissa Miller, (top right); and Research Assistants, Eleonora Sadikova (bottom left) and Laura Saldana (bottom right) presented posters at ABCT.

Technology’s potential to improve care delivery and reduce human suffering were the key focus of discussion at the recent Annual Convention of the Association for Behavioral and Cognitive Therapies (ABCT), held in Washington, D.C.

Within ABCT’s Autism Spectrum and Developmental Disabilities Special Interest Group (ASDD SIG), presentations showcased tools that leverage technology to better meet the needs of both autistic people and the clinicians who care for them. Researchers from the Center for Autism Spectrum Disorders (CASD) at Children’s National took center stage at the ASD focused group to share information about novel developments underway that harness technology for children and families.

Lauren Kenworthy, Ph.D., director of CASD, served as the keynote speaker for the ASDD SIG Meeting. She also chaired a panel, “Leveraging Technology to Improve Autism Acceptance and Treatment” and presented, ” Online Parent Training Modules to Improve Executive Function in Autistic Children” about the e-Unstuck and On Target Parent Training Study, which adapts CASD’s successful classroom-based Unstuck and On Target toolkit for children ages 5 to 10 to an online platform so more families can benefit from the program’s skills and strategies.

Dr. Kenworthy was honored with the 2018 Transformative Contribution Award from the ABCT Autism Spectrum and Developmental Disabilities Special Interest Group for her lifetime of contributions to better understanding and better interventions for young people with ASD.

“It was a special honor to receive this recognition from ABCT this year, when the annual meeting is here in our home city,” says Dr. Kenworthy. “The Center for Autism Spectrum Disorders is focused on developing technology solutions that deliver therapies to everyone who needs them, no matter where they live, and technology is one powerful and promising way we can bridge care gaps both in the Washington, D.C. region and really, around the world.”

CASD Talks

Dr. Lauren Kenworthy presenting during the panel she chaired (top); presenting to the ASDD SIG (bottom left); and receiving the ASDD SIG Transformative Award from ASDD SIG Awards Committee Chair, Dr. Tyler Hassenfeldt (bottom right).

In addition to Dr. Kenworthy, several other CASD researchers presented research during panels and poster presentations, including:

  • Panel Presentation: Efficacy of a Parent-Mediated Sexual Education Curriculum for Youth With ASD”– Cara Pugliese, Ph.D.
  • Poster presentations:
    • “Evidence of Enhanced Social Skills in Young Dual-Language Learners on the Autism Spectrum”- Allison Ratto, Ph.D. (first author)
    • “Exploring Contributors to Parents’ Ideal and Realistic Goals for Involvement in School Training”-Marissa Miller, Ph.D. (first author)
    • “Examining Caregiver Well-Being and Service Use between Latino and Non-Latino Caregivers”-Laura Saldana (first author)
    • “Pre-Pubertal Signs of Future Gender Dysphoria in Youth with ASD”-Eleonora Sadikova (first author)

The Association for Behavioral and Cognitive Therapies Annual Convention has been held for more than half a century. The gathering includes 3,500-plus mental health professionals and students who specialize in cognitive and behavioral therapies.

SIOP logo

Children’s National physicians attend the International Society of Paediatric Oncology in Japan

SIOP logo

From November 16 to 19, medical professionals, clinicians, nurses and oncology patients and families from around the globe gathered for the International Society of Paediatric Oncology (SIOP) in Kyoto, Japan. Pediatric experts in their respective fields Jeffrey Dome, M.D., Ph.D., AeRang Kim, M.D., Ph.D., Steven Hardy, Ph.D., and Karun Sharma, M.D., attended SIOP representing Children’s National. The four-day scientific programme engaged those in pediatric oncology with educational lectures, keynote speakers, tailored sessions for survivors, families and support organizations, free paper sessions, specialist sessions and Meet the Expert talks.

Dr. Kim, an oncologist with the Center for Cancer and Blood Disorders and a member of the solid tumor faculty at Children’s National, presented with Dr. Sharma, director of Interventional Radiology at Children’s, on “Interventional Radiology: Technology and Opportunities” in Meet the Expert talks on both Saturday and Sunday of the programme. They discussed background information, preclinical studies, current, ongoing studies of high-intensity focused ultrasound (HIFU), HIFU in combination with heat sensitive formulated chemotherapy and future directions. In 2017, Children’s National was the first U.S. children’s hospital to successfully use MR-HIFU to treat osteoid osteoma, and is currently accruing on early phase studies evaluating HIFU ablation and HIFU in combination with lyso-thermosensitive liposomal doxorubicin for pediatric patients with refractory/recurrent solid tumors.

Dr. Hardy, a pediatric psychologist in the Center for Cancer and Blood Disorders at Children’s, presented on “Brief Psychosocial Screening to Identify Patients in Need of a Mental Health Treatment Referral in a Childhood Cancer Survivorship Clinic.” In his educational lecture, Dr. Hardy described findings that show a brief mental and behavioral health questionnaire given to patients in the Children’s National survivorship clinic is a sensitive screening tool that can identify patients in need of more formal psychosocial evaluation and treatment. He also presented data supporting the use of a lower threshold of psychological symptoms necessary to trigger discussions about mental health treatment compared to previous reports. The key implication of Dr. Hardy’s work is that survivorship clinics lacking embedded psychology support could adopt this questionnaire, which is publically available and translated into 86 languages, to help identify survivors with mental and behavioral health concerns and ensure appropriate referrals are made.

Dr. Dome, Vice President of the Center for Cancer and Blood Disorders, served on the SIOP Scientific Programme Advisory Committee, which selected the topics for presentation.

SIOP provides an international forum for the sharing of new research and ideas related to pediatric oncology. The annual conference furthers the efforts made towards developing new treatments and cures and opens the conversation, encouraging innovation and collaboration with experts from around the world. Children’s National has taken part in SIOP for many years, most recently hosting the meeting in Washington, D.C., in 2017.

pregnant woman holding eggs

How does diet during pregnancy impact allergies in offspring?

pregnant woman holding eggs

A small percentage of women said they consumed fewer allergens during pregnancy to stave off food allergies in their newborns, according to preliminary research Karen Robbins, M.D., presented during the American College of Asthma Allergy and Immunology 2018 Annual Scientific Meeting.

Pregnant women routinely swear off alcohol and tobacco to boost their chances of having a healthy baby. What about common food allergens like nuts and milk?

There are scant data that describe how often pregnant women deliberately stop eating a specific food item in order to prevent future food allergies in their newborns. As a first step toward addressing this data gap, a research team led by Karen Robbins, M.D., an allergist at Children’s National Health System, pored through a longitudinal study conducted by the Food and Drug Administration (FDA) and the Centers for Disease Control and Prevention.

About 4,900 pregnant women completed the Infant Feeding Practices Study II prenatal questionnaire from May 2005 to June 2007. The study tracked 2,000 pregnant women from the third trimester of pregnancy and their infants through the first year of life. A small percentage of women said they had consumed fewer allergens during pregnancy to stave off food allergies in their newborns, according to a poster Dr. Robbins presented during the American College of Asthma Allergy and Immunology 2018 Annual Scientific Meeting. While their numbers were small, most of these women reported giving up major allergens like nuts, milk or eggs during pregnancy, including:

  • 144 (2.9 percent) reported restricting their diet in some way to prevent future food allergies in their offspring
  • 84 women (1.7 percent) ate fewer nuts
  • 15 women (.3 percent) ate fewer eggs and
  • 2 women (.04 percent) ate/drank consumed less dairy/milk.

“At the time the survey was conducted, few pregnant women in this large data set said they gave up certain foods with the express aim of avoiding a food allergy in their babies,” Dr. Robbins says. “However, mothers who had an older child with a food allergy or who had food allergies themselves had significantly higher odds of trying this food avoidance strategy.”

Despite the diet changes, infants born to these expectant mothers were twice as likely to experience problems with food at age 4 months – though not at age 9 months or 12 months. And these infants were no more likely to be diagnosed with a food allergy.

According to the FDA, millions of Americans suffer a food allergy each year. Reactions can range from mild to life-threatening and can begin soon after eating a problematic food item or an ingredient from that food. Among the most common allergenic foods are milk, eggs, fish, shellfish, tree nuts, peanuts, wheat and soybeans.

“We really need to know more about how often targeted food avoidance occurs among U.S. pregnant women who have a family history of food allergies,” Dr. Robbins adds. “We hope to learn what factors into these women’s decision-making as well as why many of them settled on food avoidance as a potential strategy to try to prevent food allergy in their infants.”

American College of Asthma Allergy and Immunology 2018 Annual Scientific Meeting presentation

  • “Prenatal food allergen avoidance practices for food allergy prevention.”

Karen Robbins M.D., lead author; Ashley Ramos Ph.D., co-author; Marni Jacobs, Ph.D., co-author; Kate Balas BS, co-author; and Linda Herbert, Ph.D., director of Children’s Division of Allergy and Immunology’s psychosocial clinical program, and senior author.

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.

emergency signs

Disparities in who accesses emergency mental health services

emergency signs

A Children’s research team found the number of children and adolescents visiting the nation’s emergency departments due to mental health concerns continued to rise at an alarming rate from 2012 through 2016, with mental health diagnoses for non-Latino blacks outpacing such diagnoses among youth of other racial/ethnic groups.

The demand for mental health services continues to be high in the U.S., even among children. The Centers for Disease Control and Prevention (CDC) reports that one in seven U.S. children aged 2 to 8 had a diagnosed mental, behavioral or developmental disorder. In addition, 3 percent of U.S. children aged 3 to 17 had a diagnosis of anxiety, and 2.1 were diagnosed with depression, according to the CDC.

Knowing which children use mental health services can help health care providers improve access and provide more targeted interventions.

Children’s researchers recently investigated this question in the emergency room setting, reporting results from their retrospective cross-sectional study at the American Academy of Pediatrics (AAP) 2018 National Conference & Exhibition. The research team found the number of children and adolescents visiting the nation’s emergency departments due to mental health concerns continued to rise at an alarming rate from 2012 through 2016, with mental health diagnoses for non-Latino blacks outpacing such diagnoses among youth of other racial/ethnic groups.

“Access to mental health services among children can be difficult, and data suggest that it can be even more challenging for minority children compared with non-minority youths,” says Monika K. Goyal, M.D., MSCE, assistant division chief and director of research in the Division of Emergency Medicine at Children’s National Health System and the study’s senior author. “Our findings underscore the importance of improving access to outpatient mental health resources as well as expanding capacity within the nation’s emergency departments to respond to this unmet need.”

An estimated 17.1 million U.S. children are affected by a psychiatric disorder, making mental health disorders among the most common pediatric illnesses. Roughly 2 to 5 percent of all emergency department visits by children are related to mental health concerns. The research team hypothesized that within that group, there might be higher numbers of minority children visiting emergency departments seeking mental health services.

To investigate this hypothesis, they examined Pediatric Health Information System data, which aggregates deidentified information from patient encounters at more than 45 children’s hospitals around the nation. Their analyses showed that in 2012, 50.4 emergency department visits per 100,000 children were for mental health-related concerns. By 2016, that figure had grown to 78.5 emergency department visits per 100,000 children.

During that same five-year time span, there were 242,036 visits by children and adolescents 21 and younger with mental health-related issues*. Within that group:

  • The mean age was 13.3
  • Nearly 55 percent were covered by public insurance
  • 78.4 per 100,000 non-Latino black children received mental health-related diagnoses and
  • 51.5 per 100,000 non-Latino white children received mental health-related diagnoses.

“When stratified by race and ethnicity, mental health-related visits to the nation’s emergency departments rose for non-Latino black children and adolescents at almost double the rate seen for non-Latino white children and adolescents,” Dr. Goyal adds. “These children come to our emergency departments in crisis, and across the nation children’s hospitals need to expand mental health resources to better serve these vulnerable patients.”

Because the study did not include reviews of individual charts or interviews with patients or providers, the reason for the disparate demand for mental health resources remains unclear.

*The number of patient visits during the five-year study period was revised on Nov. 1 2018, after updated analyses.

American Academy of Pediatrics National Conference & Exhibition presentation

  • “Racial disparities in pediatric mental health-related emergency department visits: a five-year, multi-institutional study.”

Anna Abrams, M.D.; Gia Badolato, MPH; Robert McCarter Jr., ScD; and Monika K. Goyal, M.D., MSCE

ambulance

Accident or assault? Pediatric firearm injuries differ by age

ambulance

According to a retrospective, cross-sectional study led by Children’s researchers, younger kids are more likely to be shot by accident, and odds are higher that older youths are victims of an assault involving a firearm.

An increasing number of children are injured by firearms in the U.S. each year, but the reasons these injuries happen vary. According to a new retrospective, cross-sectional study led by Children’s researchers and presented at the American Academy of Pediatrics (AAP) 2018 National Conference & Exhibition, firearm injuries vary by the intent of the person discharging the weapon. Younger kids are more likely to be shot by accident, and odds are higher that older youths are victims of an assault involving a firearm. Efforts to protect children from firearm-related injuries should factor in these differences in intent as legislation and policies are drafted, the study team suggests.

Researchers led by Shilpa J. Patel, M.D., MPH, Children’s assistant professor of pediatrics and emergency medicine, reviewed data aggregated in the Nationwide Emergency Department Sample from 2009 to 2013 looking for emergency department visits to treat firearm-related injuries suffered by children and adolescents 21 and younger. They excluded emergency department visits for firearm-related injuries attributed to air, pellet, BB or paintball guns.

Firearm-related injuries are a leading cause of injury and death for U.S. children. Some 111,839 children and youth were treated in emergency departments for firearm-related injuries, or 22,367 per year when averaged over the five-year study period. Nearly 63 percent of these youths were injured by accident; 30.4 percent were victims of assault; 1.4 percent used a firearm to injure themselves. Of note:

  • 89.3 percent were male
  • Their mean age was 18 (67.3 percent 18 to 21; 27.9 percent 13 to 17; 4.8 percent younger than 12)
  • 1 percent were discharged from the emergency department
  • 30 percent had injuries grave enough to trigger hospital admission and
  • 1 percent died from their injuries.

“Children younger than 12 were more likely to be shot by accident. By contrast, we found that the odds of experiencing firearm-related injuries due to assault were higher for youths aged 18 to 21,” Dr. Patel says. “Physicians can play a powerful role in preventing pediatric firearm-related injuries by routinely screening for firearm access and speaking with families about safe firearm storage and violence prevention,” she adds.

Some 52.1 percent of children with firearm-related injuries lived with families whose median household incomes exceeded $56,486.

American Academy of Pediatrics National Conference & Exhibition presentation

  • “Emergency department visits for pediatric firearm-related injury: by intent of injury.”

Shilpa J. Patel, M.D., MPH, assistant professor of pediatrics and emergency medicine and lead author, Gia M. Badolato, MPH, senior clinical research data manager and study co-author, Kavita Parikh, M.D., MS, associate professor of pediatrics and study co-author, and Monika K. Goyal, M.D., MSCE, assistant division chief and director of Academic Affairs and Research in the Division of Emergency Medicine and study senior author, all of Children’s National Health System; and Sabah F. Iqbal, M.D., medical director, PM Pediatrics, study co-author.

Femoral fracture

Broken system? Pain relief for fractures differs by race/ethnicity

Femoral fracture

Data collected by a multi-institutional research team show that kids’ pain from long bone fractures may be managed differently in the emergency department depending on the child’s race and ethnicity.

Children who experience broken bones universally feel pain. However, a new multi-institutional study presented at the American Academy of Pediatrics (AAP) 2018 National Conference & Exhibition suggests that emergency treatment for this pain among U.S. children is far from equal. Data collected by the research team show that kids’ pain may be managed differently in the emergency department depending on the child’s race and ethnicity. In particular, while non-Latino black children and Latino children are more likely to receive any analgesia, non-white children with fractured bones are less likely to receive opioid pain medications, even when they arrive at the emergency department with similar pain levels.

“We know from previously published research that pain may be treated differentially based on a patient’s race or ethnicity in the emergency department setting. Our prior work has demonstrated that racial and ethnic minorities are less likely to receive opioid analgesia to treat abdominal pain, even when these patients are diagnosed with appendicitis,” says study leader Monika K. Goyal, M.D., MSCE, assistant division chief and director of Academic Affairs and Research in the Division of Emergency Medicine at Children’s National Health System. “Emergency departments delivering evidence-based care should treat all pediatric patients consistently. These findings extend our work by demonstrating that children presenting with long bone fractures also experience differential treatment of pain based on their race or ethnicity.”

The AAP calls appropriately controlling children’s pain and stress “a vital component of emergency medical care” that can affect the child’s overall emergency medical experience. Because fractures of long bones – clavicle, humerus, ulna, radius, femur, tibia, fibula – are commonly managed in the emergency department, the research team tested a hypothesis about disparities in bone fracture pain management.

They conducted a retrospective cohort study of children and adolescents 21 and younger who were diagnosed with a long bone fracture from July 1, 2014, through June 30, 2017. They analyzed deidentified electronic health records stored within the Pediatric Emergency Care Applied Research Network Registry, which collects data from all patient encounters at seven pediatric emergency departments.

During that time, 21,642 patients with long bone fractures met the study inclusion criteria and experienced moderate to severe pain, rating four or higher on a 10-point pain scale. Some 85.1 percent received analgesia of any type; 41.5 percent received opioid analgesia. Of note:

  • When compared with non-Hispanic white children, minority children were more likely to receive pain medication of any kind (i.e. non-Latino black patients were 58 percent more likely to receive any pain medication, and Latino patients were 23 percent more likely to receive any pain medication).
  • When compared with non-Latino white children, minority children were less likely to receive opioid analgesia (i.e., non-Latino black patients were 30 percent less likely to receive opioid analgesia, and Latino patients were 28 percent less likely to receive opioid analgesia).

“Even though minority children with bone fractures were more likely to receive any type of pain medication, it is striking that minority children were less likely to receive opioid analgesia, compared with white non-Latino children,” Dr. Goyal says. “While it’s reassuring that we found no racial or ethnic differences in reduction of patients’ pain scores, it is troubling to see marked differences in how that pain was managed.”

Dr. Goyal and colleagues are planning future research that will examine the factors that inform how and why emergency room physicians prescribe opioid analgesics.

American Academy of Pediatrics National Conference & Exhibition presentation

  • “Racial and ethnic differences in the management of pain among children diagnosed with long bone fractures in pediatric emergency departments.”

Monika K. Goyal, M.D., MSCE, and James M. Chamberlain, M.D., Children’s National; Tiffani J. Johnson, M.D., MSc, Scott Lorch, M.D., MSCE, and Robert Grundmeier, M.D., Children’s Hospital of Philadelphia; Lawrence Cook, Ph.D., Michael Webb, MS, and Cody Olsen, MS, University of Utah School of Medicine; Amy Drendel, DO, MS, Medical College of Wisconsin; Evaline Alessandrini, M.D., MSCE, Cincinnati Children’s Hospital; Lalit Bajaj, M.D., MPH, Denver Children’s Hospital; and Senior Author, Elizabeth Alpern, M.D., MSCE, Lurie Children’s Hospital.

newborn kangaroo care

Boosting parental resilience in the NICU

newborn kangaroo care

Preliminary findings from an ongoing cross-sectional study presented during the American Academy of Pediatrics 2018 National Conference & Exhibition suggests a strong relationship between resilience and the presence of social support, which may help parents to better contend with psychological distress related to their preterm infant being in the NICU.

Resilience is the remarkable ability of some people to bounce back and overcome stress, trauma and adversity. Being resilient is especially important for parents whose babies are born prematurely – a condition that predisposes these children to numerous health risks both immediately and far into the future and that often triggers a stay in the neonatal intensive care unit (NICU). According to the Centers for Disease Control and Prevention, about 1 in 10 U.S. infants was born preterm in 2016.

Parents of these vulnerable newborns who feel less resilient may experience more symptoms of psychological distress, including depression and anxiety. However, preliminary findings from an ongoing cross-sectional study presented during the American Academy of Pediatrics (AAP) National Conference & Exhibition suggests a strong relationship between resilience and the presence of social support, which may help parents to better contend with psychological distress related to their preterm infant being in the NICU.

“Oftentimes, parenting a child in the NICU can be a time of crisis for families,” says Ololade A. Okito, M.D., FAAP, a Neonatal-Perinatal Medicine Fellow at Children’s National Health System who presented the preliminary study results during the 2018 AAP conference. “Studies have indicated a relationship between higher resilience and a reduction in psychological stress in other groups of people. However, it was unclear whether that finding also applies to parents of infants in the NICU.”

Because parental psychological distress can impact the quality of parent-child interactions, the Children’s research team wants to evaluate the relationship between resilience and psychological distress in these parents and to gauge whether activities that parents themselves direct, like the skin-to-skin contact that accompanies kangaroo care, helps to bolster resiliency.

So far, they have analyzed data from 30 parents of preterm infants in the NICU and used a number of validated instruments to assess parental resilience, depressive symptoms, anxiety, NICU-related stress and perceived social support, including:

The infants were born at a mean gestational age of 29.2 weeks. When their newborns were 2 weeks old:

  • 44 percent of parents (16 of 30) reported higher resilience
  • 37 percent of parents (11 of 30) screened positive for having elevated symptoms of depression and
  • 33 percent of parents had elevated anxiety.

“These early findings appear to support a relationship between low parental resilience scores and higher scores for depression, anxiety and NICU-related stress. These same parents were less likely to participate in kangaroo care and had lower social support. By contrast, parents who had more social support – including  receiving support from family, friends and significant others – had higher resilience scores,” says Lamia Soghier, M.D., FAAP, CHSE, Medical Unit Director of Children’s Neonatal Intensive Care Unit and senior study author.

The study is an offshoot from “Giving Parents Support (GPS) after NICU discharge,” a large, randomized clinical trial exploring whether providing peer-to-peer parental support after NICU discharge improves babies’ overall health as well as their parents’ mental health. The research team hopes to complete study enrollment in early 2019.

American Academy of Pediatrics National Conference & Exhibition presentation

  • “Parental resilience and psychological distress in the neonatal intensive care unit (PARENT) study.”

Ololade A. Okito, M.D., FAAP, Neonatal-Perinatal Medicine Fellow and presenting author; Yvonne Yui, M.D.; Nicole Herrera, MPH, Children’s Research Institute; Randi Streisand, Ph.D., Chief, Division of Psychology and Behavioral Health; Carrie Tully, Ph.D.; Karen Fratantoni, M.D., MPH, Medical Director of the Complex Care Program; and Senior Author, Lamia Soghier, M.D., FAAP, CHSE, Medical Unit Director, Neonatal Intensive Care Unit; all of Children’s National Health System.

QUILT conference

Children’s National hosts Quality Improvement Leadership Training Course

QUILT conference

In October 2018, Children’s National hosted 20 neonatologists from 15 hospitals in China for a 10 day Quality Improvement Leadership Training Course focused on quality improvement principles and methodology. The course also featured presentations on hospital-wide quality improvement work and included speakers from the Quality & Safety Department, Nursing Quality, and the Neonatal Intensive Care Unit (NICU). The Performance Improvement team worked with the attendees on their own projects, such as reducing antibiotic use and increasing family-centered care in the NICU. The attendees then presented at the end of the course to their colleagues, as well as to five hospital presidents visiting from China.

neuron

Children’s National to host 29th Annual Pediatric Neurology Update

neuron

The Children’s National Health System Center for Neuroscience and Behavioral Medicine is proud to host the 29th Annual Pediatric Neurology Update course.

This year’s course will focus on three critical areas in pediatric neuroscience and neurodevelopment: epilepsy with focuses on innovations in epilepsy surgery and new therapeutics; tuberous sclerosis including neurosurgical advances and transition to adulthood; and autism spectrum disorder with emphasis on new understandings and pre-requisites for an “Autism Friendly Hospital.”

We invite you to join us for presentations from renowned experts in the field in this full-day, CME accredited event on April 11, 2019 at the Bethesda North Marriott Hotel & Conference Center in Rockville, MD.

For more information and to register, visit ChildrensNational.org/NeurologyUpdate.

Charles Berul and Rohan Kumthekar demonstrate tiny pacemaker

A new prototype for tiny pacemakers, faster surgery

Charles Berul and Rohan Kumthekar demonstrate tiny pacemaker

Charles Berul, M.D., chief of cardiology at Children’s National, and Rohan Kumthekar, M.D., a cardiology fellow working in Dr. Berul’s bioengineering lab at the Sheikh Zayed Institute for Pediatric Surgical Innovation, explore ways to make surgical procedures for infants and children less invasive.

Rohan Kumthekar, M.D., a cardiology fellow working in Dr. Charles Berul’s bioengineering lab at the Sheikh Zayed Institute for Pediatric Surgical Innovation, part of Children’s National Health System, presented a prototype for a miniature pacemaker at the American Heart Association’s Scientific Sessions 2018  on Sunday, Nov. 11. The prototype, approximately 1 cc, the size of an almond, is designed to make pacemaker procedures for infants less invasive, less painful and more efficient, measured by shorter surgeries, faster recovery times and reduced medical costs.

Kumthekar, a Cardiovascular Disease in the Young Travel Award recipient, delivered his oral abstract, entitled “Minimally Invasive Percutaneous Epicardial Placement of a Custom Miniature Pacemaker with Leadlet under Direct Visualization,” as part of the Top Translational Science Abstracts in Pediatric Cardiology session.

“As cardiologists and pediatric surgeons, our goal is to put a child’s health and comfort first,” says Kumthekar. “Advancements in surgical fields are tending toward procedures that are less and less invasive. There are many laparoscopic surgeries in adults and children that used to be open surgeries, such as appendix and gall bladder removals. However, placing pacemaker leads on infants’ hearts has always been an open surgery. We are trying to bring those surgical advances into our field of pediatric cardiology to benefit our patients.”

Instead of using open-chest surgery, the current standard for implanting pacemakers in children, doctors could implant the tiny pacemakers by making a relatively tiny 1-cm incision just below the ribcage.

“The advantage is that the entire surgery is contained within a tiny 1-cm incision, which is what we find groundbreaking,” says Kumthekar.

With the help of a patented two-channel, self-anchoring access port previously developed by Berul’ s research group, the operator can insert a camera into the chest to directly visualize the entire procedure. They can then insert a sheath (narrow tube) through the second channel to access the pericardial sac, the plastic-like cover around the heart. The leadlet, the short extension of the miniature pacemaker, can be affixed onto the surface of the heart under direct visualization. The final step is to insert the pacemaker into the incision and close the skin, leaving a tiny scar instead of two large suture lines.

The median time from incision to implantation in this thoracoscopic surgery study was 21 minutes, and the entire procedure took less than an hour on average. In contrast, pediatric open-heart surgery could take up to several hours, depending on the child’s medical complexities.

“Placing a pacemaker in a small child is different than operating on an adult, due to their small chest cavity and narrow blood vessels,” says Kumthekar. “By eliminating the need to cut through the sternum or the ribs and fully open the chest to implant a pacemaker, the current model, we can cut down on surgical time and help alleviate pain.”

The miniature pacemakers and surgical approach may also work well for adult patients with limited vascular access, such as those born with congenital heart disease, or for patients who have had open-heart surgery or multiple previous cardiovascular procedures.

The miniature pacemakers passed a proof-of-concept simulation and the experimental model is now ready for a second phase of testing, which will analyze how the tailored devices hold up over time, prior to clinical testing and availability for infants.

“The concept of inserting a pacemaker with a 1-cm incision in less than an hour demonstrates the power of working with multidisciplinary research teams to quickly solve complex clinical challenges,” says Charles Berul, M.D., a guiding study author, electrophysiologist and the chief of cardiology at Children’s National.

Berul’s team from Children’s National collaborated with Medtronic PLC, developers of the first implantable pacemakers, to develop the prototype and provide resources and technical support to test the minimally-invasive surgery.

The National Institutes of Health provided a grant to Berul’s research team to develop the PeriPath, the all-in-one 1-cm access port, which cut down on the number of incisions by enabling the camera, needle, leadlet and pacemaker to be inserted into one port, through one tiny incision.

Other study authors listed on the abstract presented at Scientific Sessions 2018 include Justin Opfermann, M.S., Paige Mass, B.S., Jeffrey P. Moak, M.D., and Elizabeth Sherwin, M.D., from Children’s National, and Mark Marshall, M.S., and Teri Whitman, Ph.D., from Medtronic PLC.