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Neurology & Neurosurgery

Children’s Neurologist Receives NIH Grant to Explore New Pathway in DMD

Dr. Michael Lopez received a nearly $1 million grant to study a new pathway in Duchenne muscular dystrophy.

What happens when you knock out a ubiquitous protein in muscle that appears to be involved in numerous neuromuscular diseases, including Duchenne muscular dystrophy (DMD)? That’s the question Children’s of Alabama pediatric neurologist Michael Lopez, M.D., Ph.D., and his mentors, University of Alabama at Birmingham (UAB) professor Peter King, M.D., and assistant professor Matthew Alexander, Ph.D., are trying to answer.

Lopez recently received a Career Development Award worth nearly $1 million from the National Institute of Neurologic Disorders and Stroke to better understand a novel pathway involved in the development and progression of DMD.

The disease, which primarily affects males, is caused by a mutation in the gene that encodes for the dystrophin protein, which is critical for musculoskeletal health. Without this protein, muscles degrade over time, resulting in a severe paralysis that affects breathing and eventually causes the heart to fail. Patients typically die in their early 20s or 30s.

There is no satisfactory treatment for DMD. A multidisciplinary approach involving neurology, cardiology, pulmonary care and rehabilitation—among other specialties—helps patients manage the disease. Immune-dampening corticosteroids are the primary medical therapy.

Lopez and his team identified a new pathway involved in the sustained inflammation that underlies the disease. While chronic inflammation is driven, in part, by elevated levels of the cytokine transforming growth factor β (TGFβ1), clinical studies using drugs to inhibit TGFβ1 have been, by and large, unsuccessful. Lopez thinks that’s because the TGF signaling is more complicated, so any attempt to reduce levels must account for downstream signaling via transcription factors, called Smads, that receive instructions from TGFβ.

While it’s been known for some time that the Smad2 and Smad3 factors are important players in the TGFβ pathway, Lopez’s research identified another Smad called Smad8 that is not only turned on in a cellular model of DMD but is 48 times higher than other Smad factors. His findings were published in the International Journal of Molecular Science in July. “It appears to be a previously unrecognized pathway that could cause larger dysregulation of gene expression within the muscle,” he said.

When the researchers silenced Smad8 in cultured muscle cells, they found the cells differentiated into muscle fibers more successfully. “That’s a key experiment because it shows that too much of Smad8 was likely doing the opposite: preventing the muscle cells from differentiating into myofibers,” Lopez said.

The grant provides the funds to breed transgenic mouse lines in which the gene that encodes for Smad8 is deleted in cells destined to become muscle cells. “That way, we can answer the question, ‘Is it necessary for the normal function of muscle, and does it make DMD less severe in the mouse?’” Lopez said. “The premise is that we can intervene on this pathway and reverse these impairments.”

January 17, 2023 by childrensal

Neurology & Neurosurgery

LITT Device Makes Epilepsy Surgery More Precise, Less Invasive

Surgeons perform a laser interstitial thermal therapy (LITT) procedure at Children’s of Alabama.

A new procedure called laser interstitial thermal therapy (LITT) allows Children’s of Alabama surgeons to take a minimally invasive approach to brain surgery and target tissue for ablation with greater precision.

Usually, patients with drug-resistant epilepsy who experience intractable seizures undergo resective surgery, in which a surgeon removes part of the brain. The procedure is very invasive, however, entailing a craniotomy, or removing part of the skull and cutting through the dura, which covers the brain. Some areas of the brain are difficult to navigate, and removing certain sections, such as the eloquent cortex, can lead to a loss of important functions, such as sensory processing or speech. Resective surgery also requires several days in the hospital and carries a risk of infection and bleeding.

“The small LITT device enables us to get into a deep region of the brain easily and safely,” pediatric neurologist Kathryn Lalor, M.D., said. “We can find the seizure onset with the electrode and then target the same area with LITT.”

The robotic system inserts a 2-to-3-millimeter probe (about the size of the tip on a new crayon) through a hole drilled into the skull. MRI guidance precisely locates the target area responsible for seizures. Once the probe is in place, a burst of laser energy destroys the tissue.

The device was initially FDA approved for temporal and medial structures in the brain, where much of adult epilepsy surgery occurs. Now, Children’s and other pediatric centers are demonstrating its effectiveness at treating epilepsy in other areas of the brain. “There’s a lot of research on how to make the energy delivery even more specific, so no unintended areas are affected,” Lalor said.

Using the device also reduces brain swelling thanks to its less invasive nature. “So, the recovery time is much quicker, and many of these patients go home the next day,” she said. In fact, studies find few complications and a good safety record.

In 2022, the team completed six surgeries using the LITT system.

January 17, 2023 by childrensal

Neurology & Neurosurgery

Children’s Embarks on Multi-Center Pediatric Migraine Study

Dr. Scott Turner is leading a pediatric migraine study at Children’s of Alabama.

The University of Alabama at Birmingham’s pediatric neurology group at Children’s of Alabama is launching its first externally funded study on migraines this year, marking the start of what they hope will become a robust research program in the area. Such research is needed given that an estimated 17% of children have frequent or severe headaches according to their parents. [i]^,[ii] The Children’s headache clinic team knows these numbers well—they see hundreds of children with headaches each year.

The five-year study, funded by the Patient-Centered Outcomes Research Institute (PCORI), is a comparative effectiveness trial designed to determine which works better at preventing pediatric migraines: medication (amitriptyline) plus cognitive behavioral therapy (CBT) or CBT alone. Current guidelines recommend using the two together to prevent migraines, but there is limited data on whether CBT is just as effective on its own.

“The big question is, do they really need amitriptyline?” nurse practitioner Scott Turner, DNP, the principal investigator for the Children’s of Alabama site, said. “Or would CBT alone actually be effective?” If it is, he said, patients might not need medication, which always carries a risk of side effects.

CBT teaches kids how their body and brain experience pain and how to use relaxation skills to reduce stress and pain. Therapists also work with patients to help them reduce negative thought and feeling patterns, such as always thinking the worst is going to happen or that a migraine will ruin an important event. Parents learn how to reinforce their child’s active coping efforts.

Children’s is one of 15 sites participating in the study. Its primary outcome is reducing the number of headache days and migraine-related disability from baseline to 28 weeks. Secondary outcomes include changes in headache severity and effects on the patient’s physical functioning and quality of life. Participants will receive CBT via telehealth, an approach that worked well during the pandemic and provides greater availability. The goal is to recruit about 400 children nationally, and Children’s hopes to enroll approximately 25 patients in the study beginning this spring.

Although he’s in charge of the study at Children’s, Turner initially doubted that CBT alone could be better than CBT with medication. “I would have thought that pill-taking was essential,” he said. But after researching the topic and learning more about CBT, he’s unsure. “I guess we’ll find out in about five years.”

[i] Nieswand V, Richter M, Gossrau G. Epidemiology of Headache in Children and Adolescents-Another Type of Pandemia. Curr Pain Headache Rep. 2020 Aug 25;24(10):62. doi: 10.1007/s11916-020-00892-6. PMID: 32840694; PMCID: PMC7447651.

[ii] 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.

January 17, 2023 by childrensal

Neurology & Neurosurgery

RNS Device Can Reduce Seizures in Children with Epilepsy

Dr. Kathryn B. Lalor is a pediatric neurologist at Children’s of Alabama.

A new procedure that can reduce the number and severity of epileptic seizures in children is now available at Children’s of Alabama. The NeuroPace RNS^®, or responsive neurosurgical stimulation, is a small device about the size of a matchbox. When placed inside the skull with two wires attached to the brain surface and/or inside the brain, it monitors and responds to brain signals, often short-circuiting a seizure before it begins. It’s been approved for use in adults since 2013, but with recent studies on its safety and effectiveness in children, more centers like Children’s are now offering it “off label” to patients whose seizures don’t respond to medication and/or other surgical interventions.

“It’s an adjunctive therapy, meaning we don’t do it as an initial treatment or thinking someone will necessarily be cured, although that is always our goal,” pediatric neurologist Kathryn B. Lalor, M.D., said. In a multicenter study of 17 patients under age 18, the average number of seizures fell 54.4% over the 1.7-year follow-up. Most patients also experienced less intense, shorter or less frequent seizures. One patient became seizure-free, although four showed no improvement.[1]

The device wouldn’t be a first step in managing seizures, Lalor said, because it’s surgical. “We would only undertake it if we know the seizures can’t be controlled with medications alone,” she said. It also has advantages over medications, including fewer, if any, long-term side effects. One major benefit of the device is that it seamlessly uploads data on its activity to a database clinicians can access, enabling them to track and measure seizures objectively.

“Right now, we know about seizures we witness,” Lalor said. “But there are silent seizures or ones that happen during sleep or when no one is around.” Better data enables doctors to ensure they’re treating all the seizures because even silent seizures can have an effect. With this data, she said, the team can remotely adjust the amount of stimulation the device sends and/or change a child’s medication.

While the device is still not FDA-approved for children, Lalor said more insurance companies are covering it, and a growing number of hospitals offer it with successful outcomes. There is also an ongoing multi-center trial—including the University of Alabama at Birmingham—evaluating its use in adolescents ages 12 to 17.

“We’re excited to be able to offer this,” Lalor said. The team hopes to implant the first device early this year.

[1] Nagahama Y, et al. Real-World Preliminary Experience With Responsive Neurostimulation in Pediatric Epilepsy: A Multicenter Retrospective Observational Study. Neurosurgery. 2020;39(6):997-1004.

January 17, 2023 by childrensal

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.

September 5, 2022 by childrensal

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,

September 5, 2022 by childrensal

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.”

September 2, 2022 by childrensal

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.

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.

February 15, 2022 by childrensal

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.

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 Alabama, Children’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.

February 15, 2022 by childrensal

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.

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.”

February 15, 2022 by childrensal

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