Behavioral Sciences

Dr. Keating and Abigail

Multidisciplinary approach to hydrocephalus care

Reflective of the myriad symptoms and complications that can accompany hydrocephalus, a multidisciplinary team at Children’s National works with patients and families for much of childhood.

The Doppler image on the oversized computer screen shows the path taken by blood as it flows through the newborn’s brain, with bright blue distinguishing blood moving through the middle cerebral artery toward the frontal lobe and bright red depicting blood coursing away. Pitch black zones indicate ventricles, cavities through which cerebrospinal fluid usually flows and where hydrocephalus can get its start.

The buildup of excess cerebrospinal fluid in the brain can begin in the womb and can be detected by fetal magnetic resonance imaging. Hydrocephalus also can crop up after birth due to trauma to the head, an infection, a brain tumor or bleeding in the brain, according to the National Institutes of Health. An estimated 1 to 2 per 1,000 newborns have hydrocephalus at birth.

When parents learn of the hydrocephalus diagnosis, their first question tends to be “Is my child going to be OK?” says Suresh Magge, M.D., a pediatric neurosurgeon at Children’s National Health System.

“We have a number of ways to treat hydrocephalus. It is one of the most common conditions that pediatric neurosurgeons treat,” Dr. Magge adds.

Unlike fluid build-up elsewhere in the body where there are escape routes, with hydrocephalus spinal fluid becomes trapped in the brain. To remove it, surgeons typically implant a flexible tube called a shunt that drains excess fluid into the abdomen, an interim stop before it is flushed away. Another surgical technique, called an endoscopic third ventriculostomy has the ability to drain excess fluid without inserting a shunt, but it only works for select types of hydrocephalus, Dr. Magge adds.

For the third year, Dr. Magge is helping to organize the Hydrocephalus Education Day on Feb. 25, a free event that offers parents an opportunity to learn more about the condition.

Reflective of the myriad symptoms and complications that can accompany hydrocephalus, such as epilepsy, cerebral palsy, cortical vision impairment and global delays, a multidisciplinary team at Children’s National works with patients and families for much of childhood.

Neuropsychologist Yael Granader, Ph.D., works with children ages 4 and older who have a variety of developmental and medical conditions. Granader is most likely to see children and adolescents with hydrocephalus once they become medically stable in order to assist in devising a plan for school support services and therapeutic interventions. Her assessments can last an entire day as she administers a variety of tasks that evaluate how the child thinks and learns, such as discerning patterns, assembling puzzles, defining words, and listening to and remembering information.

Neuropsychologists work with schools in order to help create the most successful academic environment for the child. For example, some children may struggle to visually track across a page accurately while reading; providing a bookmark to follow beneath the line is a helpful and simple accommodation to put in place. Support for physical limitations also are discussed with schools in order to incorporate adaptive physical education or to allow use of an elevator in school.

“Every child affected by hydrocephalus is so different. Every parent should know that their child can learn,” Granader says. “We’re going to find the best, most supportive environment for them. We are with them on their journey and, every few years, things will change. We want to be there to help with emerging concerns.”

Another team member, Justin Burton, M.D., a pediatric rehabilitation specialist, says rehabilitation medicine’s “piece of the puzzle is doing whatever I can to help the kids function better.” That means dressing, going to the bathroom, eating and walking independently. With babies who have stiff, tight muscles, that can mean helping them through stretches, braces and medicine management to move muscles smoothly in just the way their growing bodies want. Personalized care plans for toddlers can include maintaining a regular sleep-wake cycle, increasing attention span and strengthening such developmental skills as walking, running and climbing stairs. For kids 5 and older, the focus shifts more to academic readiness, since those youths’ “full-time job” is to become great students, Dr. Burton says.

The area of the hospital where children work on rehabilitation is an explosion of color and sounds, including oversized balance balls of varying dimensions in bright primary colors, portable basketball hoops with flexible rims at multiple heights, a set of foam stairs, parallel bars, a climbing device that looks like the entry to playground monkey bars and a chatterbox toy that lets a patient know when she has opened and closed the toy’s doors correctly.

“We end up taking care of these kids for years and years,” he adds. “I always love seeing the kids get back to walking and talking and getting back to school. If we can get them back out in the world and they’re doing things just like every other kid, that’s success.”

Meanwhile, Dr. Magge says research continues to expand the range of interventions and to improve outcomes for patients with hydrocephalus, including:

  • Fluid dynamics of cerebrospinal fluid
  • Optimal ways to drain excess fluid
  • Improving understanding of why shunts block
  • Definitively characterizing post-hemorrhagic ventricular dilation.

Unlike spina bifida, which sometimes can be corrected in utero at some health institutions, hydrocephalus cannot be corrected in the womb. “While we have come a long way in treating hydrocephalus, there is still a lot of work to be done. We continue to learn more about hydrocephalus with the aim of continually improving treatments,” Dr. Magge says.

During a recent office visit, 5-year-old Abagail’s head circumference had measured ¼ centimeter of growth, an encouraging trend, Robert Keating, M.D., Children’s Chief of Neurosurgery, tells the girl’s mother, Melissa J. Kopolow McCall. According to Kopolow McCall, who co-chairs the Hydrocephalus Association DC Community Network, it is “hugely” important that Children’s National infuses its clinical care with the latest research insights. “I have to have hope that she is not going to be facing a lifetime of brain surgery, and the research is what gives me the hope.”

Stacy Hodgkinson, Ph.D. Psychologist, Generations Program Director of Mental Health and Research and Study Lead Author

Improving mental health service access

Woman sitting on chair

Psychologist Stacy Hodgkinson, Ph.D., has been implementing a new strategy — integrating mental health services with primary care — to increase patients’ access to mental health care.

Children are disproportionately affected by poverty in the United States: Although they make up less than one-quarter of the entire population, about one-third of people living in poverty are kids. Lack of economic resources in childhood can have lifelong effects, including increasing the chances of experiencing a variety of mental health issues.

What’s more, although kids living in low socioeconomic settings are more likely to need mental health care, studies show that they are less likely to receive it, says Children’s National Health System Psychologist Stacy Hodgkinson, Ph.D. Estimates indicate that fewer than 15 percent of children living in poverty who need mental health care receive any services, and even fewer get comprehensive treatment.

The reasons for this disparity are multifold, Hodgkinson explains. One reason is simply insufficient numbers of trained mental health care providers to meet demand, particularly in low-income communities. Another is an inability to access available services —parents in low-paying jobs may not be able to take time off to take their children to appointments or even afford bus fare to reach a clinic. Others are afraid of the stigma that might surround being treated for a mental health issue. In her role as the director of mental health and research for the Generations Program, a support service for teen parents and their children, Hodgkinson says she has seen each of these scenarios in play.

However, she adds, over the past several years, she and Children’s National colleagues have been implementing a new strategy to increase mental health care access: Integrating these services with primary care.

“Often times, a family is with a primary care provider throughout a child’s life into adulthood. It’s a natural, familiar setting where people feel comfortable,” Hodgkinson says. “That makes a primary care provider’s office really fertile ground for integrating mental health services.”

Hodgkinson and coauthors point out in a review paper published in the January 2017 issue of Pediatrics that most children see their primary care provider for annual well visits as well as when they are sick — regardless of household income. Those visits provide ample opportunities for parents to bring up other concerns or for providers to implement screening that could lead to a mental health diagnosis. From there, she explains, that provider can offer mental health support and facilitate a connection with a mental health provider who works in the same office or who works in partnership with the primary care office.

In the review, she and colleagues suggest several strategies for making this idea become a reality. The first step, they agree, is education. Beginning with their fundamental training, primary care doctors and mental health providers need to see their roles as conjoined.

“We really need to change the way people think about primary care,” Hodgkinson says. “Disciplines don’t have to be siloed, where primary care providers do their thing here and mental health providers do their thing there. We should be thinking about how we can bring everyone together under one tent.”

Many psychology training programs have primary care integration rotations, she adds, and an increasing number of health systems like Children’s National now have mental health providers working in the same offices as primary care providers.

But not every clinic has the resources to group providers together under a single roof. Even for those offices, Hodgkinson says, primary care doctors need to develop a workflow that streamlines patients who need mental health services to health care professionals who provide it. In some cases, that might mean making the referral call on patients’ behalf to ensure they get through, walking families through the specific information they will need if they make the call on their own and following up to troubleshoot any problems with access.

“We want to close as many gaps as we can to keep families from falling through the cracks,” she says.

Developing an infrastructure that supports this model also can’t be ignored, Hodgkinson points out. Primary care offices might need to determine how to allocate space to mental health providers, hire dedicated workers to improve access and develop new strategies for billing.

None of this will be easy, she adds, but it will be worth it to make sure that more patients receive needed services.

“Even though we have integrated mental health and primary care at Children’s National, it very much remains a work in progress, and we’re continuing to fine-tune this machine to make it work better,” she says. “But if a patient comes to even one appointment that they might not have made it to in the past, that’s an accomplishment.”

Efficacy of family-centered advanced care planning for adolescents with HIV and their families

Led by experts at Children’s National Health System and the Adolescent Palliative Care Consortium, a new study published in Pediatrics reports that pediatric advanced care planning (pACP) can provide a positive environment for adolescents with Human Immunodeficiency Virus (HIV) and their families to discuss end of life care. Being born with HIV increases an adolescent’s risk of dying from an opportunistic infection or chronic illness, underscoring the need for pACP and the significance of this research.

Read more here.

AAP presentations on feeding disorders

Irene Chatoor, M.D., vice chair of the Department of Psychiatry and Behavioral Sciences at Children’s National Health System, specializes in helping children work through their food anxieties and encourages parents to set aside dedicated time for family meals. That’s expertise she will share with peers at the American Academy of Pediatrics 2016 National Conference.

“I also want to help pediatricians to differentiate between toddlers who ‘no-no-NO’ to the few foods they don’t like – which is OK – and children whose food selection is quite limited,” she says. “They need to be aware of red flags, like a child who spits out food, gags, or grimaces in response to certain foods or refuses to eat other foods that may look similar or that have the same texture as the aversive foods.”

Their limited may lead to nutritional problems, and also may have emotional consequences, according to a 2015 article published in Pediatrics for which Dr. Chatoor was senior author.

This makes parents increasingly anxious, and they often try all kinds of distractions to get their child to eat. Dr. Chatoor has described this feeding disorder as infantile anorexia. Interestingly, research has shown that families who eat together at regular times help their children to outgrow their feeding problems.

AAP 2016 presentations:
Saturday, October 22, 2016
• F1069- “Food Refusal: From Picky Eating to Feeding Disorders”
9:30 a.m. to 10:15 a.m.

Sunday, October 23, 2016
• F2012- “Food Refusal: From Picky Eating to Feeding Disorders”
7:30 a.m. to 8:15 a.m.