Clinic Provides Neurodevelopmental and Neuropsychiatric Services to Children and Adults

For decades, the Tuberous Sclerosis Complex Clinic at Cincinnati Children’s, which is one of the largest clinics of its kind, has served families around the world. The clinic provides care to over 600 children and adults each year, with plans to grow.

Neurologist Jamie Capal, MD, returned to Cincinnati Children’s this past year to help colleagues Darcy Krueger, MD, PhD, David Ritter, MD, PhD, David Franz, MD and others expand neurodevelopmental and neuropsychiatric services for the Tuberous Sclerosis Complex Clinic.

“We’re adding a specific clinic focused on tuberous sclerosis complex-associated neuropsychiatric disorder, that we’re holding twice a month for dedicated visits,” says Dr. Capal, who serves as the clinic’s director. “There’s only one other clinic in the country that does this.”

Helping Families Manage Development and Behavior

For patients with tuberous sclerosis complex, symptoms can vary, but typically most cases include seizures. The biggest struggle for families, though, is often developmental and behavioral disorders.

“Families usually can come to terms with seizures because we have some treatments and disease-modifying therapies,” says Dr. Capal. “But it’s really the neuropsychiatric—the development, the behavior—that’s trickier to pin down. It’s not like you can take a pill and everything gets better, so it really disrupts their lives. There’s also not a lot of research as to why this happens or what we can do to make it better, and it takes an emotional toll on families.”

Many experts at Cincinnati Children’s, including Dr. Capal who did a combined residency in neurology and neurodevelopmental disabilities, are interested in and dedicated to finding ways to make neuropsychiatric symptoms better for patients and families. The team hopes to harness all the neurodevelopmental expertise and modify it to tuberous sclerosis complex—with more clinical and research expansion to come.

“We’ve always had the ability to provide comprehensive care,” says Dr. Capal. “But our dedicated tuberous sclerosis complex-associated neuropsychiatric disorder clinic really expands on that.”

Remote Delivery of Behavioral Intervention

One function of the tuberous sclerosis complex-associated neuropsychiatric disorder clinic is behavioral intervention through telehealth. Cincinnati Children’s providers are working to extend their medical licensing to deliver telehealth in other states for patients who can’t access similar services in their home states. Additionally, other local tuberous sclerosis complex clinics that may need a higher level of expertise in this area can collaborate with the providers at Cincinnati Children’s.

As part of these efforts, Dr. Capal and her team have received a grant from the Department of Defense focused on remote delivery of behavioral intervention. The therapy, called Regulating Together, was developed by Rebecca Shaffer, PsyD, at Cincinnati Children’s.

Regulating Together uses a combination of caregiver training, mindfulness, and cognitive and behavioral techniques that target emotion regulation in kids with a variety of challenges. Initially designed to treat patients with autism, this approach has since provided therapy for kids with conditions such as attention-deficit/hyperactivity disorder and Fragile X syndrome.

Typically, Regulating Together as a clinical service happens during group therapy in the hospital for both children and parents. Now, the Tuberous Sclerosis Complex Clinic is trying it in a remote setting for children with tuberous sclerosis complex.

“We’re piloting it as a remote intervention for kids ages 8 to 17,” Dr. Capal says. “This is something we recognize as an unmet need and something families have really struggled with despite medications and other options.”

The hope is that families can get the rare, expert care they need even if they don’t live close to Cincinnati Children’s.

Interested in learning more about the Tuberous Sclerosis Complex Clinic, or need a second opinion? Contact us at 513-636-4222.

(Published December 2025)

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