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Inside Pediatrics, Neurology & Neurosurgery

New Clinic Looks for Links Between Neurology and Genetics

Children’s of Alabama has a specialized clinic in neurogenetics.

Some neurologic conditions have a genetic basis, and some genetic conditions manifest with neurological symptoms. With so much crossover, Children’s of Alabama created a specialized clinic in neurogenetics. 

“I get a lot of referrals from my neurology colleagues and my genetics colleagues,” said Amitha Ananth, MD, who completed a fellowship in medical genetics as well as neurology. “Creating the clinic allows us to focus in on these problems rather than seeing the children individually. It also provides a good teaching environment for trainees in neurology and genetics to see the overlap.”

Neurogenetics is a growing field of study designed to better understand genetic causes of brain disorders, and to diagnose and treat these conditions. 

Ananth sees children and families together with a genetic counselor to discuss genetic risks and the benefits of testing. “It’s really helpful to have a genetic counselor explain and guide the discussion about testing,” she said. 

So how did she become interested in neurogenetics? “I was always going to be a neurologist,” she said. “I found the brain and the nervous system really fascinating. And in medical school, I found I enjoyed the pediatric version of it so much more.” 

Ananth went to Stanford to complete the medical genetics fellowship after realizing she didn’t have enough genetics background to feel comfortable with gene sequencing and understanding the results. “There are definitely people in child neurology with significant research backgrounds who are quite comfortable with genetics, but as a purely clinical child neurologist I felt I needed the extra training to gain this expertise.” 

A lot of pediatric neurology has a genetic basis, she said. The affordability and accessibility of broad-based genetic testing, such as whole exome sequencing, is relatively new but provides important information in difficult-to-diagnose cases. “What I learned during my training was that the next big revolution was going to be in diagnosing neurogenetic conditions with the hope that we would work toward treating them.”

That’s already happening with groundbreaking new treatments for genetically based pediatric neurologic diseases such as Duchenne’s muscular dystrophy and spinal muscular atrophy (SMA). Ananth remembers when she was in residency, and SMA was a death sentence. “There was no treatment. Now there is,” she said.   

Inside Pediatrics, Neurology & Neurosurgery

Headache Checklist Supports Primary Care Providers and Helps Patients Find Relief Faster

The Children’s of Alabama’s PCP Headache Referral Checklist is helping doctors evaluate and treat headache patients.

Even kids get headaches. Lots of headaches. A U.S. survey found that 17 percent of children had “frequent or severe headaches” according to their parents, and that rate is thought to be as high as 30 percent among post-pubescent children.[i]

The UAB pediatric neurology group at Children’s of Alabama knows the numbers. Headache is the second-most common referral to their practice. In 2019, for instance, they received at least 40 referrals a month of children with headaches, and that number has skyrocketed since the start of the pandemic. And that, according to UAB Child Neurology Residency Program Director and pediatric neurologist Sarah Novara, MD, MSHQS, makes it difficult to effectively triage patients into available appointment spots. 

“Our goal is to best help these children be evaluated and managed, but we knew our referral process was not what it could be,” she said. At the same time, the neurology group also recognized community pediatric providers could help many of the patients they referred if they had the tools to succeed, freeing up neurologists to see those who required more complex care.

“It became apparent that we weren’t educating the community providers well enough so they would feel confident managing primary headache disorders in children and adolescents,” neurology faculty Scott Turner, DNP, said. That’s important because most headaches are not caused by a life-threatening condition like a brain tumor, which is exceedingly rare. 

Evaluating and treating headache patients as quickly as possible is critically important given that migraine, a very common headache type, is the second leading cause of disability in the world.[ii] Plus, recurrent headaches in children can significantly impair their quality of life, leading to missed school and missed opportunities for successful learning.

The pediatric neurology team embarked on a mission from 2019 to 2020 to better educate primary care providers about pediatric headaches and, in turn, create a better system of triage and communication to the pediatric neurology group.

The result is the PCP Headache Referral Checklist. With a large, red stop sign front and center, the message is clear: referring providers need to work through the brief checklist to check for headache red flags that should prompt a referral to the emergency department. These include:

  • Focal neurologic deficit 
  • Altered mental status, high fever and neck rigidity
  • Sudden severe headache (called a “thunderclap headache”)
  • Papilledema
  • Headaches that wake the child from sleep 

They also document special circumstances that may necessitate an earlier appointment with the neurology team, such as headaches that recur 15 times or more a month. 

The checklist also contains tools to help primary care providers manage their patients’ headaches while they wait for their visit with a specialist, including medication doses, a link to the Alabama State Department of Education school medication permission form, and a link to the Headache Relief Guide, an online portal specifically designed to help children learn about headaches and how to prevent and treat them. A QR code provides a link to the American Academy of Neurology and American Headache Society guideline for the acute treatment of migraine in children and adolescents. 

“The primary care provider has often done a very good workup of the child,” Novara said. “The checklist helps us see that and avoid redundancies.”

The team piloted the form with three Birmingham pediatric practices, where it proved highly successful for both the referring provider and neurology team triaging. “We didn’t know if they would go for it,” Novara said. “They’re busy, and they already have a lot of forms to fill out, but they loved it.”

“(Nurse practitioners) don’t get a lot of guidance or training in headache,” Turner said. And the time primary care providers can spend with patients is limited. The checklist, he said, “gives them the support to make decisions for themselves.”

Today, the checklist is required with the referral. A pediatric neurologist or nurse practitioner reviews it and triages the patient for appointments. Even before the child is seen by the pediatric neurology group, however, the primary care provider can start some of the interventions listed on the form. “This is empowering and also helps the family see that the referring provider is on the same wavelength as the pediatric neurology team at Children’s of Alabama,” Novara said. 

One important outcome is a better-quality referral, she said. “We have more information and are better able to care for the patient.”

In the meantime, the number of kids with headaches is increasing due to COVID. For some, recurring headaches are a lingering symptom of a COVID infection. In other cases, Turner said, parents held off seeking care during the height of the pandemic. Plus, the pandemic itself took a toll on children’s mental health. “When you completely turn a child’s life upside down, you’re going to end up with a lot of stress, which we know is a common comorbidity with chronic pain.”

In addition to the universal use of the headache referral checklist, the team is also reaching out to community providers through social media and hosting webinars and other educational activities about pediatric headache. “Primary care providers really seem to want this information,” Turner said. 


[i] Lateef TM, Merikangas KR, He J, Kalaydjian A, Khoromi S, Knight E, Nelson KB. Headache in a national sample of American children: prevalence and comorbidity. J Child Neurol. 2009 May;24(5):536-43. doi: 10.1177/0883073808327831. PMID: 19406755; PMCID: PMC2794247.

[ii] Powers, Scott W., et al. “Prevalence of Headache Days and Disability 3 Years After Participation in the Childhood and Adolescent Migraine Prevention Medication Trial.” JAMA Network Open, vol. 4, no. 7, American Medical Association, 2021, pp. e2114712–e2114712,

Inside Pediatrics, Neurology & Neurosurgery

Birmingham to Cape Town: Children’s Neurologist Consults Across Continents

Leon Dure, MD, neurologist trained in pediatric movement disorders at Children’s of Alabama.

It’s not easy to find a specialist trained in pediatric movement disorders. At Children’s of Alabama, there are two: Leon Dure, MD, and Emily Gantz, DO. They and their multidisciplinary team provide the bulk of care for children with movement disorders in Alabama and beyond. 

Considering the dearth of movement disorder specialists here in the U.S., Dure wondered what the numbers were like in Africa. His curiosity led him to become a consultant to a pediatric neurologist in Cape Town, South Africa. 

Dure’s interest in helping physicians in under-developed countries was piqued through his work with the International Child Neurology Association (ICNA), which seeks to foster education and resources for practitioners in low-resource environments, such as South Asia, Africa and South America. 

He recalls a meeting where a doctor from sub-Saharan Africa presented. “She said there are 80 million children under the age of 18 within that region and two or three neurologists,” Dure said. “So, I realized that the types of problems and issues they’re facing are very different from what we face here.”

In the U.S., Dure often receives requests from colleagues for his opinion on a child, typically via a video sent by text. Why, he wondered, couldn’t the same be done for clinicians in low- and moderate-income countries?

Turns out it wasn’t quite so simple, given the challenges of moving information from places as disparate as South Africa and Birmingham. Dure persevered and found vCreate, a tech company that works with the U.K.’s National Health System to provide secure video messaging. There is even a separate unit called vCreateNeuro, a cloud-based service that allows registered patients and clinicians to securely share smartphone-recorded videos. 

He and vCreate developed a proof-of-concept project with a neurologist who has an interest in movement disorders at the Red Cross Hospital in Cape Town. When he has something he wants Dure to review, the neurologist uploads it to the vCreate platform, and Dure gets an email alert. 

“Then we begin a back-and-forth regarding what to call it, what to do about it, how to work it up, et cetera,” he said. 

The pilot has been in place for about six months, and Dure has consulted on about eight videos. 

“These are relatively unusual conditions that are very difficult to characterize,” he said. “So just having someone else say ‘Yeah, you got it, you’re right,’ is quite helpful.”

Dure would like to grow the program to other countries with other U.S.-based pediatric neurologists providing their expertise, but that will require funding. For now, vCreate has been providing the technology for free. “I don’t know if that’s going to be a long-term possibility,” he said. “But so far, it works. And I’m able to provide my expertise to somebody in Cape Town without a whole lot of effort.”

Inside Pediatrics, Neurology & Neurosurgery

Epilepsy Transition Clinic Helps Adolescents Move to Adult Care 

At right, Kathryn Lalor, M.D., is a pediatric neurologist at Children’s of Alabama and an assistant professor in the Division of Neurology in the University of Alabama at Birmingham Department of Pediatrics. At left is epilepsy specialist Quynh Vo, M.D., of the University of Alabama at Birmingham.

At right, Kathryn Lalor, M.D., is a pediatric neurologist at Children’s of Alabama and an assistant professor in the Division of Neurology in the University of Alabama at Birmingham Department of Pediatrics. At left is epilepsy specialist Quynh Vo, M.D., of the University of Alabama at Birmingham.

Adolescents are not known for self-discipline. Yet that’s exactly what teens with epilepsy need in order to avoid seizure triggers, like lack of sleep and alcohol consumption. They also must be vigilant about taking their medication. However, as young people become young adults and start to manage their care independently, “these are the hardest things to do,” said Children’s of Alabama pediatric neurologist Kathryn Lalor, M.D. 

Which is why young adulthood carries a high risk of recurrent seizures, particularly as epilepsy patients transition from pediatric to adult neurology. “Many of these patients have had epilepsy for a long time, and they’ve been diagnosed and cared for by the same neurologist for a long time. It can be very scary and disconcerting to change that, especially as you’re coping with so many other things,” Dr. Lalor said. 

Then there are the difficulties on the medical side, such as electronic medical record systems that don’t talk to each other, making transitioning between providers difficult. “We were hearing from our adult colleagues that they just didn’t have the information they needed,” Dr. Lalor said. “It was like starting over with the medical history.” 

Which is why Dr. Lalor and her team started one of the first epilepsy transition clinics in the country. “We really wanted to improve the process from a logistical and informational perspective but also help guide these patients through the process.” That’s particularly important given the impact of epilepsy on daily life. “It affects school, being able to drive, your job,” she said. “And we really wanted to be a place where we could help young adults gain their footing in their life.” 

Now when the pediatric neurologist refers the patient to the adult provider, they gather all the pertinent data and meet together with the patient. 

The young person also completes a transition-readiness assessment questionnaire, a validated tool specifically for epilepsy, to determine how ready they are to independently manage their disease. “And if there are any places where they’re still behind, still not doing things quite on their own, we set ‘homework’ goals for them for the next visit,” said Dr. Lalor. Clinic staff follow patients until they are fully managing their own care or until the staff feels they’re stable and ready to transition, at which point most patients continue with epilepsy specialist Quynh Vo, M.D., of the University of Alabama at Birmingham. 

The clinic is so busy that in December 2021, staff added a second day a month. The next step, Dr. Lalor said, is to implement national guidelines that recommend beginning transition at age 12 and add case management and social workers to the team.  

Inside Pediatrics, Neurology & Neurosurgery

License Plates and Safer Schools: Advocacy in Action in Epilepsy 

Kathryn Lalor, M.D., is a pediatric neurologist at Children’s of Alabama and an assistant professor in the Division of Neurology in the University of Alabama at Birmingham Department of Pediatrics.

Kathryn Lalor, M.D., is a pediatric neurologist at Children’s of Alabama and an assistant professor in the Division of Neurology in the University of Alabama at Birmingham Department of Pediatrics.

When you think about epilepsy and Children’s of Alabama, you think about the epilepsy clinic, groundbreaking research, and state-of-the-art treatments and surgeries. You probably don’t think about license plates and training school staff to give life-saving emergency treatments. Yet that’s just what the pediatric neurology division has been doing as part of its advocacy efforts in the epilepsy field.  

Together with the Epilepsy Foundation AlabamaChildren’s of Alabama pediatric neurologists Monisha Goyal, M.D., Kathryn Lalor, M.D., and other staff designed the first epilepsy license plate in the country. The state approved the “Help End Epilepsy” car tag in March 2020, but it couldn’t be produced until at least 1,000 people committed to buying it. The team hit that milestone in 2021 thanks to the help of a generous donation that made the first 1,000 tags free.

“That was a big, big deal,” Dr. Lalor said. Each plate costs $50, $41.25 of which goes to the pediatric epilepsy program at Children’s. “We want to use some of that money to help educate future epilepsy specialists,” she said, citing a shortage of specialists in the region. In fact, while Children’s has a fellowship slot in epilepsy, it hasn’t had the funding to fill it.

The second major advocacy effort in 2021 revolved around improving the school environment for children with epilepsy by training school personnel other than nurses to administer seizure-rescue medications. That’s important for the 7,500 Alabama students with epilepsy. If there isn’t a nurse nearby, they can’t participate in activities like sports and field trips. Yet just 70 to 75 percent of Alabama public schools have access to a nurse, often sharing that nurse among several schools. 

Dr. Lalor and her colleagues, along with the Epilepsy Foundation Alabama, lobbied state legislators to pass the Seizure Safe Schools Act, including testifying in front of the House and Senate committees.  

It wasn’t as easy as they expected it to be, with opposition coming from the school nurses association and some legislators concerned that allowing non-medical volunteers to administer emergency medicine would hinder efforts to hire more nurses. That was never the intention, Dr. Lalor said. “We would love for school nurses to be everywhere,” she said. “The school systems just can’t afford that.” And there’s a national shortage of school nurses. Nonetheless, the legislature added an amendment to the act calling for more efforts to put school nurses in every school. “We fully support this,” said Dr. Lalor. “This is crucial for the safety of students.” 

A statewide task force composed of Epilepsy Foundation and Children’s representatives, school nurses, and public health officials is working to implement the new law and hopes to roll out education in early spring 2022. 

Inside Pediatrics, Neurology & Neurosurgery

Stopping Tics in Their Tracks 

Emily Gantz, M.D., is a pediatric neurologist at Children’s of Alabama and an assistant professor in the Division of Neurology in the University of Alabama at Birmingham Department of Pediatrics.

Emily Gantz, M.D., is a pediatric neurologist at Children’s of Alabama and an assistant professor in the Division of Neurology in the University of Alabama at Birmingham Department of Pediatrics.

The hallmark of Tourette syndrome is an array of tics, ranging from eye blinking and rolling to head and neck movements to verbal sounds. “It’s like feeling that you need to cough in a meeting, so you try to suppress it. But the more you try not to cough, the bigger the itch gets, so you just have to cough,” said Children’s of Alabama pediatric neurologist Emily Gantz, D.O. “Then [Tourette syndrome patients’] brains learn that when they do the movement or make the sounds, the urge goes away, and they feel better.” 

Those tics, however, can lead to bullying, academic issues, and social isolation. But just a few hours spent with the occupational therapists and neurologists at the Comprehensive Behavioral Intervention for Tics, or CBIT, clinic at Children’s of Alabama, can be lifechanging. 

The multidisciplinary program began in 2010. Since then, thousands of children have passed through, and 95 percent have significantly reduced or eliminated their tics. “It’s very doable,” said Jan Rowe, M.D., OT, who started the clinic“While it is hard work, the kids see it as a very easy way to manage their tics.” 

The children first meet with Dr. Gantz or Pediatric Neurology Director Leon S. Dure IV, M.D., who makes or confirms a diagnosis of Tourette syndrome, tic disorder, or other functional movement disorder. Then patients spend about one hour a week for eight weeks with a CBIT-trained occupational therapist in the clinic, where they learn competing responses to interrupt the tics, which minimizes and/or extinguishes them. 

For instance, someone with a head or neck tic, such as flipping their head back, is taught to push their head straight back, like leaning into a headrest. “When you do that, your chin automatically comes down just a bit and the front neck muscles are activated, which holds the head still,” Dr. Rowe said. An eye-rolling tic might be managed by looking down and out. And shoulder shrugs can be headed off by pushing and holding the shoulders down with the arms against the sides. 

“Having a competing response or strategy to block the tic allows the child to do something instead of just trying to suppress it, which takes a tremendous amount of physical and mental energy,” Dr. Rowe said. “This therapy can be really life-changing for these kids, especially those facing teasing or bullying in school or in their social life,” she said. And it only takes a handful of sessions. 

The clinic has been particularly busy the past 18 months with a pandemic-related phenomenon called “TikTok tics.” It primarily affects teenage girls with no previous history of tics. Time spent watching people with Tourette syndrome on the social media platform TikTok, combined with anxiety and stress, seem to trigger abnormal vocalizations and movements. 

The problem is global, Dr. Rowe said. Girls come into the clinic with a diagnosis of Tourette syndrome from their primary care clinician, but it’s clear something else is going on since they didn’t have the tics before, something Dr. Gantz confirms during a Zoom visit. The teens are invited into the CBIT program but must also work with a therapist to deal with their anxiety, stress, or trauma. “Let’s face it, these kids have had tremendous loss in the past two years,” Dr. Rowe said. “Many of them are on overload.”  

Dr. Rowe, who has tics herself, has been running the clinic for 12 years. “I just absolutely love it,” she said. “It is so life-changing.” 

Inside Pediatrics, Neurology & Neurosurgery

Pioneering Surgery Spares Parents and Infants from Helmets

The Cleft and Craniofacial Center at Children’s of Alabama is one of the busiest in the country, with some of the most experienced physicians and support staff. From cleft palate to craniosynostosis (a condition in which the skull fuses too early) and complex tumor surgeries, the center draws patients from the entire Southeast region and beyond. It is a truly multidisciplinary group with neurologists, neurosurgeons, plastic surgeons, and a craniofacial pediatrician. 

It also offers state-of-the art therapies, including a new type of endoscopic surgery for craniosynostosis in infants as young as three months that is only performed in a few centers in the U.S. “The typical procedure is an endoscopic release of the craniosynostosis followed by post-operative helmet therapy,” said neurosurgeon James M. Johnston, M.D. “Helmet therapy works well, but kids have to wear it for 23 hours a day, and that can be a lot of work for families, especially when they live far from Birmingham,” he said. In addition, the Alabama Medicaid program, which covers most of these children, does not pay for the helmets, which can cost thousands of dollars (and children often need more than one). This puts tremendous financial strain on many families.  

So Dr. Johnston, joined by neurosurgeon Curtis J. Rozzelle, M.D., and plastic surgeons Rene’ P. Myers, M.D., and John Grant, M.D., brought spring-mediated cranioplasty, which was developed at Wake Forest University, to Children’s. It starts with the same endoscopic craniectomy used for children who would require helmets. Only in this procedure, the plastic surgeon steps in and inserts custom-made springs into the bony defect created by the surgery. The springs work to expand the skull over several months to correct the abnormal head shape and ensure appropriate cranial volume for brain growth. A few months later, the plastic surgeon removes the springs during a same-day surgery.  

“What’s nice is that there’s no need for a helmet,” Dr. Johnston said. Plus, studies show the procedure is just as safe and effective as cranioplasties requiring helmets.1 It’s also covered by all health insurance. “So, we’re able to do it for all children,” he said.  

A similar procedure using cranial distractors like those used to lengthen femurs is used for skull expansion, explained Dr. Grant. This technology is used in older children who need more intracranial volume but who are beyond the age at which the skull can form new bone to fill in surgically created soft spots. By “stretching” the bones of the skull more slowly, he said, the child’s body adjusts by making bone to fill in the growing gap. 

Regardless of the procedure used, early referrals are critical for these babies, said Dr. Rozzelle. “If we can see them by 2 months of age, that gives us plenty of time to get whatever preoperative assessments we need and get them on the schedule so that either the spring or endoscopic craniectomy with subsequent molding helmet is a viable option,” he said. Older babies cannot be treated endoscopically and require standard open surgery, which may lead to more blood loss and longer hospital stays.2 

Yet the craniofacial clinic still sometimes sees babies 6 months or older who never received a diagnosis or whose pediatrician didn’t refer them to Children’s. “That’s frustrating,” Dr. Rozzelle said. 

Nonetheless, said Dr. Myers, “Since we are comfortable with all of the techniques, we can tailor a plan to the individual child. No one is exactly the same.” 


1 Arko L, Swanson JW, Fierst TM, et al. Spring-mediated sagittal craniosynostosis treatment at the Children’s Hospital of Philadelphia: technical notes and literature review. Neurosurg Focus. 2015 May;38(5):E7

2 Hashim PW, Patel A, Yang JF, et al. The effects of whole-vault cranioplasty versus strip craniectomy on long-term neuropsychological outcomes in sagittal craniosynostosis. Plast Reconstr Surg 134:491–501, 2014.

Inside Pediatrics, Neurology & Neurosurgery

Advanced Imaging Enables Complex Surgeries for Epilepsy

If you’re going to conduct surgery on the brains of children with severe epilepsy, you better know what type they have, where they have it, and how it affects function.  

That’s where functional imaging comes in, including single-photon emission computerized tomography (SPECT), functional MRI (fMRI), positron emission tomography (PET), and magnetoencephalography (MEG). Most neurosurgical centers have one or two; but Children’s of Alabama has them all.  

“This is important,” said pediatric neurosurgeon Jeffrey P. Blount, M.D., “because there is never perfect alignment between the studies.” With multiple studies, however, comes greater certainty about the brain regions the disease impacts, which provides greater certainty about which parts to remove during surgery. Agreement between the scans is called “concordance,” and it is the central concept in epilepsy localization, said Dr. Blount.  

Most patients who require epilepsy surgery also require an invasive monitoring system prior to surgery, said neurosurgeon Curtis J. Rozzelle, M.D. In the past, he explained, that required an open cranial exposure to place electrodes on the surface of the brain and, sometimes, within the brain. 

But with newer techniques, particularly stereoelectroencephalography (SEEG), a minimally invasive surgical procedure used to precisely find the areas of the brain where seizures originate, surgeons can place an array of depth electrodes without performing a craniotomy. Instead, each electrode is placed robotically through a tiny hole drilled in the skull using a robotic stereotactic approach. “That relies very heavily on high-resolution scans,” Dr. Rozelle said, including fusing CT and MRI images, to put the electrodes in without damaging a critical part of the brain. 

“Mostly what we’re trying to avoid is hitting blood vessels with the depth electrodes while getting an array of electrodes that will cover the area of interest,” Dr. Rozelle said. The functional imaging studies are critical in establishing the target zones. Plus, since MEG and fMRI are based on magnetic field fluctuations, the MEG images can be mapped onto the MRI scan in three dimensions. The older technique, in which electrodes were placed on the surface of the brain, only provided a two-dimensional image. 

The child spends several days with the implanted electrodes to capture data about the seizures, which a neurologist then analyzes to identify the exact area of the brain that requires treatment. That surgery itself also relies heavily on high-resolution imaging. A laser ablation, for instance, is performed in the MRI scanner. A larger-volume surgery that requires open resection also relies on imaging because the surgical target looks the same as the normal brain. “To help us ensure that we hit the target, we can map the neurologist analysis into a navigation system that directs us to the right area,” Dr. Rozzelle said. “That ensures that we remove the tissue we need to take out and keep everything else intact.” 

Neurosurgeons at Children’s perform about 50 cranial epilepsy procedures a year, of which about 30 require the invasive monitoring. 

“We are very fortunate to work in a center where we have so much high-quality functional imaging available on a single campus,” said Dr. Blount. 

Inside Pediatrics, Neurology & Neurosurgery

Addressing Post-Traumatic Syndrome Disease from Hydrocephalus

Hydrocephalus-Doctor-Brain-Scans-Resized-V2

Children’s of Alabama neurosurgeon Brandon Rocque, M.D.

It’s not surprising that kids with brain tumors and their parents experience a significant amount of stress and psychological distress during the acute post-diagnosis period. It even has a name: pediatric medical traumatic stress. As Children’s of Alabama neurosurgeon Brandon Rocque, M.D., studied this phenomenon a few years ago, it occurred to him that it would almost certainly apply to children with hydrocephalus. 

“We know that just encountering doctors or the medical system can be traumatic for children,” said Dr. Rocque. “For children, just coming to the hospital can be traumatic enough to trigger post-traumatic stress disorder,” or PTSD. 

Numerous factors contribute to stress, particularly the perceived threat to the child’s life. “Even if there isn’t a threat, the child perceives it as such,” Dr. Rocque said. Add to that separation from their parents, uncertainty about the outcome, and the unpredictability of a serious medical condition. “That describes hydrocephalus extremely well,” he said, because these children are treated with shunts that could become blocked at any time requiring additional medical interventions.  

Symptoms of shunt failure can vary widely. Some children simply have a mild headache; other patients can become extremely sick and be in danger of death within a couple of hours. By age 10, “the average child [with hydrocephalus] has had at least two shunt replacements. This is always hanging over the families,” Dr. Rocque said, putting them and their children at high risk for PTSD. 

To test his hypothesis, Dr. Rocque introduced a screening survey into the hydrocephalus clinic to screen for PTSD as well as anxiety, depression, fatigue and resilience. “We found that, overall, the kids with hydrocephalus are doing pretty well. But the parents are not doing so well,” he said. About one in five parents met the diagnostic criteria for PTSD based on their symptoms. More than half attributed it to their child’s condition.  

So why aren’t the kids as affected? One reason, Dr. Rocque said, is that the children don’t know anything different. They’ve lived their entire lives with the condition and the shunts. “But for parents, there was always something new and the risk that something bad is going to happen to their child,” he said.  

Not all the kids surveyed were fine, however. “Some had issues with PTSD, and those were the ones coming to the hospital more. Those whose shunts weren’t behaving well,” Dr. Rocque said. “We need to be aware that these kids have a higher risk for PTSD.”  

They also found that the children and their patients tested exhibited very little resilience, which can help protect against PTSD.  

A survey conducted in conjunction with the Hydrocephalus Association confirmed their findings.  

Dr. Rocque and his team are now working with the association to develop a program to help reduce the risk of PTSD in patients and their families and with a psychologist who is also the mother of an adult with hydrocephalus to develop a tool to help build resilience in patients and their families.  

“This is the first time anyone has really focused on the psychological comorbidities of this condition,” Dr. Rocque said. “I think it has the potential to have a big effect in our population.” 

Inside Pediatrics, Neurology & Neurosurgery

Exploring the Brain from the Inside Out

Pediatric neurointerventional radiology is a small but growing specialty, one increasingly in use given the growing number of endovascular procedures performed in children with neurovascular conditions. “It’s a niche specialty,” says Jesse Jones, M.D., Children’s of Alabama Chief of Neurointervention. “A lot of doctors don’t know about it—let alone patients.”  

Dr. Jones is part of the hospital’s vascular anomalies team, one of the largest pediatric vascular anomalies programs in the Southeast and the only one in Alabama. He works with an interdisciplinary team of experts specializing in the diagnosis, treatment and ongoing care of all vascular anomalies and is part of the team’s monthly clinic. 

On the adult side, neurointerventional radiologists spend a lot of time removing blood clots from stroke patients. But stroke is rarer in children. The hospital’s neurosurgeons and neurologists more often call on Dr. Jones to evaluate congenital anomalies, including vein of Galen malformation or arteriovenous malformations (AVM), as well as inflammatory disorders like vasculitis or obliterative vasculopathy. “It’s when a child presents with dangerous or unusual neurovascular findings and the team is trying to characterize it and plan future treatment that I come in,” he said. 

Dr. Jones, who completed a residency and two fellowships, uses minimally invasive techniques to diagnose and treat numerous neurovascular conditions, including stroke and AVM, but also aneurysms, and lympho-vascular proliferations of the head and neckThe beauty of his approach is that it helps avoid open incisions, reducing the risk of complications and enabling kids to go home sooner. 

His interest in pediatric medicine started with his grandfather, who was a pediatrician. “I looked up to the work he did treating children,” Dr. Jones said. “Working with adults can get frustrating because many conditions they have could have been avoided with lifestyle changes. But in children, they bear no responsibility.” 

Dr. Jones also knew he wanted to do something with the brain. “I’m fascinated with how the brain works,” he said. “It’s a miraculous organ and even after all these years of study still a bit of an enigma.” Being involved in a neuroscience-related field and interacting with other specialists who study the brain is intellectually stimulating, he said. “It’s the best of both worlds: I get to use my hands as an interventional radiologist and work with the brain too.” 

And, of course, work with children.