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epilepsy

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

Children’s of Alabama Clinicians Bring Expertise and Training to Vietnam

Global Surgery NEW_WEB

Children’s of Alabama physicians review a brain scan at a hospital in Vietnam. Neurosurgeons, neurologists and other medical staff travel to Vietnam at least once a year to provide lectures and hands-on training at hospitals in Hanoi and Ho Chi Minh City as part of Children’s of Alabama’s Global Surgery Program.

Surgical interventions to reduce the burden of drug-resistant epilepsy in children have become an integral part of the field in the past 20 years. In low- or middle-income countries like Vietnam, however, it typically remains a vision, not a reality. Vietnam, for instance, has just two adult and two pediatric neurosurgery training programs for a country of 95 million people, and just four pediatric neurosurgeons serving a population of more than 50 million in the northern part of the country.

Enter Children’s of Alabama’s Global Surgery Program, which is designed to form strong, collaborative relationships with large pediatric hospitals in low- and middle-income countries and provide subspecialty fellowship training at Children’s. The hospital’s relationship with Vietnam began in 2013, with an initial visit to neurosurgeons in Ho Chi Minh City. Since then, a team from Children’s, including pediatric neurosurgeon Brandon Rocque, M.D., MS, FAANS, Pediatric Epilepsy Surgery Director Pongkiat Kankirawatana, M.D., Clinical Neurophysiology and Pediatric Epilepsy Program Director Monisha Goyal, M.D., and Director of Neuromonitoring Trei King, R.EEG.T, C.N.I.M., among others, has traveled the nearly 9,000 miles to Vietnam at least once a year to provide lectures and hands-on training at hospitals in Hanoi and Ho Chi Minh City. Their efforts have helped create premier epilepsy programs that draw children from throughout southeast Asia.

“We started with the corpus callosotomy,” Rocque said, a procedure performed on children with generalized epilepsy prone to drop attacks. It involves splitting the main connection pathway between the two cerebral hemispheres to prevent the attacks. The Vietnamese team, led by a neurosurgeon who specialized in brain tumors, performed two such surgeries with the Children’s of Alabama neurosurgeons, then went on to complete 10 themselves over the next six months, all with good long-term results.

Epilepsy surgery is not possible without advanced EEG monitoring, which is where King came in. His job was to teach EEG technologists how to use an EEG in the operating room, including electrode placements, and the most appropriate test for the child’s condition. “We started with the basics and now we’re going much deeper,” he said.

“The people there are extremely hard working and very, very smart,” King said. “They just didn’t have the opportunity and education. The training with our staff allows them to see the entire gamut of what we do in the field and, hopefully, grow to do what we do.”

The Children’s of Alabama team usually spends a week in each city, giving lectures and assisting with the more complex surgeries. “We’re not trying to hammer out a bunch of cases,” Rocque stressed. “The model is not missionary surgery; it’s teaching and working on the patients they asked us to assist with in order to reach a goal of improving specific techniques for the neurologists and surgeons.”

In addition to building the team’s skills in epilepsy surgery, the team hopes to improve how pediatric neurosurgeons are trained in Vietnam, Rocque said. Currently, residents are trained in neurosurgery but don’t receive any formal pediatric training. “There is a really big opportunity to improve the way pediatric neurosurgery is taught in this region,” Rocque said. To help in that goal, Vietnamese physicians and EEG nurses now come to Alabama for several months for focused training on various procedures.

The partnership has continued to grow, with the Vietnamese doctors sending PowerPoint presentations on difficult cases for discussion at Children’s of Alabama’s weekly multidisciplinary meeting, during which the neurology team develops treatment plans. Now the team also discusses the Vietnamese patients. “When we started, we often had to ask for more information and make some changes to the treatment plan,” Rocque said. “But over the last year, their own recommendations have been spot on.”

The experience has been eye opening for the Children’s of Alabama clinicians. “I found a pediatric neurology and neurosurgery program making a valiant effort in diagnosing and treating one child after another with minimal resources,” said Goyal, who visited City Children’s Hospital in Ho Chi Minh City. The children slept on cots that spilled out into the adjacent roofed but open courtyards and hallways, she said. “There were no fans and in September temperatures in Ho Chi Minh were far from balmy.” She was also struck by the fact that the government does not allow the use of benzodiazepines, one of the most common medications used to control seizures in the U.S.

However, Goyal said, “the small number of clinicians do an admirable job with limited resources. They learn from textbooks, not from mentors, even though they have much fewer technical and pharmacological resources.”

“As a physician, this has been a very rewarding experience,” Goyal said. She, Rocque and King are planning another trip this spring to Ho Chi Minh City to continue helping the hospital develop of its own pediatric surgical epilepsy program.

King echoed Goyal’s comments. “It’s been one of the most rewarding things I’ve experienced in my career,” he said. “You see the big difference you make not only in the training, but in the impact on the patients receiving care that they would not get unless we’re there.”

“The patients and families are so appreciative,” King said. “I’ve never experienced that level of appreciation before. I think a lot of it has to do with realizing that without the partnership and collaboration we wouldn’t be able to do the surgeries.”

For instance, he recalls one family whose child was operated on returning to the hospital a year later with a picture of the child to express their thanks. “Those are the things they make this so rewarding,” he said. “When we see the difference it makes in the life of the patients and families and the joy that continues long after the surgery.”