Innovations in Pediatric Epilepsy Care with Dr. David Bieber

Each year, more than 2,200 children from around the world come to Lurie Children’s Epilepsy Center for expert multidisciplinary epilepsy care. In this episode, Dr. David Bieber, a pediatric epilepsy specialist and director of the Clinical Neurophysiology Program at Lurie Children's, explains how new innovations help the team offer the very latest in personalized epilepsy care.

Show Notes

• The Epilepsy Center at Ann & Robert H. Lurie Children’s Hospital of Chicago, a Level 4 epilepsy center recognized by the National Association of Epilepsy Centers, extends its mission beyond seizure control to supporting children’s long-term medical, emotional, and developmental well-being.
• Dr. Bieber was drawn to epilepsy care because working with children allows him to intervene earlier in life and make decisions that can significantly shape a patient's long-term outcomes.
• Epilepsy care at Lurie Children’s is built around partnership, honesty and individualized interpretation of complex data. Dr. Bieber says tests like EEGs provide objective information, but meaningful care comes from interpreting those results in the context of each child’s life. This philosophy drives the center’s use of advanced tools such as stereo-EEG, epilepsy surgery, and neuromodulation devices to tailor treatment plans.
• Beyond physicians and surgeons within the center, the team includes neuropsychologists, psychiatrists, social workers, dietitians, and school liaisons who address the cognitive, emotional, and social challenges that often accompany epilepsy. Families benefit from coordinated care conferences and behind-the-scenes collaboration that focuses on quality of life, not just seizure reduction.
• Dr. Bieber is part of ongoing research into implantable neurostimulation devices and the push toward truly personalized epilepsy care using patient-specific brain data. He also takes part in  global health partnerships, including efforts to build sustainable epilepsy programs in underserved regions.

Transcript

[00:00:00] Erin Spain, MS:
This is Precision Perspectives on Children’s Surgery from Ann & Robert H. Lurie Children’s Hospital of Chicago. I’m your host, Erin Spain. On this podcast, we introduce you to surgeons and specialists at one of the country’s most renowned children’s hospitals to find out how they are transforming pediatric medicine.

Today, we’re taking you inside the Epilepsy Center at Ann & Robert H. Lurie Children’s Hospital of Chicago, one of the most advanced pediatric epilepsy programs in the country. Each year, more than 2,200 children from around the world come here for expert multidisciplinary care, from state-of-the-art video EEG monitoring to specialized clinics and advanced epilepsy surgery.

Recognized as a Level 4 Epilepsy Center by the National Association of Epilepsy Centers, this nationally prominent program doesn’t just treat epilepsy, it helps children live fuller lives by supporting their medical, emotional and developmental needs well into adulthood.

To learn more about this special program, we’re joined today by Dr. David Bieber, a pediatric epilepsy specialist and director of the Clinical Neurophysiology Program at Lurie Children’s. Welcome to the show, Dr. Bieber.

[00:01:19] Dr. David Bieber:
Thank you.

[00:01:20] Erin Spain, MS:
Let’s start with you. What led you to pediatric epilepsy, and can you explain neurophysiology for listeners who may not be familiar with the field?

[00:01:32] Dr. David Bieber:
I actually went into medical school wanting to be an adult cardiologist, and I hated it. I had planned my entire medical school career around cardiology, and then I had pediatrics at the very end. One thing led to another, and I realized how much I loved neurology, and more specifically, epilepsy.

I was fascinated by the field, and I loved working with children. It felt incredibly rewarding because I could make a bigger impact by helping patients earlier in their lives. When you work with children, the decisions you help them make now can benefit them for the rest of their lives. Being part of that process is deeply satisfying.

I’m technically a clinical neurophysiologist, which means I completed pediatrics residency, followed by general neurology with a pediatric focus, and then additional training in neurophysiology. Neurophysiology is the study of how the nervous system functions. Clinically, that includes EEGs, which measure brain waves, EMGs for nerves and muscles, sleep medicine and intraoperative monitoring of the nervous system during surgery.

I was drawn to the breadth of the field but ultimately focused on EEG and epilepsy. My particular area of interest is neuromodulation, which includes implantable devices in the brain or neck that deliver electrical stimulation to help control seizures.

[00:03:21] Erin Spain, MS:
Was the ability to really help this population what motivated you to focus on epilepsy?

[00:03:30] Dr. David Bieber:
Yes. The moment it really clicked for me was during training, when I was reading a stereotactic EEG. That’s when we use robotic guidance to place electrodes into or onto the brain to evaluate epilepsy for surgery. When I saw what was possible, and realized that epilepsy surgery is the only true cure for patients who don’t outgrow their epilepsy, I knew how impactful this work could be.

That’s when I changed everything to focus on epilepsy, particularly working with children who could benefit from epilepsy surgery.

[00:04:09] Erin Spain, MS:
What is your role within the Epilepsy Center, and what motivates you to come to work every day?

[00:04:19] Dr. David Bieber:
I find a lot of joy in being part of the patient and family care team. I see myself as a partner helping families navigate the very complex world of epilepsy.

I’ve always been passionate about understanding what a test result actually means for the person sitting in front of me. Tests may give us objective data, but medicine is really about interpreting that data and applying it in a way that helps the individual patient. These tests are biomarkers, signals of what the body is doing, and our job is to use that information thoughtfully.

That’s what drew me to epilepsy surgery, stereotactic EEG and neuromodulation. We have powerful tools that work, but there are still many questions about how to use them most effectively for each individual patient.

[00:05:28] Erin Spain, MS:
How do you approach relationship building with families?

[00:05:32] Dr. David Bieber:
Honesty. I want to be an open, honest partner in the provider-patient relationship, even when the truth is difficult. It’s better to be upfront about what we know and, just as importantly, what we don’t know.

[00:05:55] Erin Spain, MS:
People come from all over the world to the Epilepsy Center at Lurie Children’s. What makes this program unique?

[00:06:06] Dr. David Bieber:
We often see children who don’t respond to their first medication. Like all Level 4 centers, we offer complex epilepsy surgery, but we also have a high-volume, highly experienced team of epileptologists, neurosurgeons and radiologists who work together regularly.

Beyond surgery, we have one of the largest ketogenic diet programs in the country, with a dedicated team of dietitians. We were also among the first programs to include a school liaison to help families navigate education and daily life with epilepsy.

[00:07:14] Erin Spain, MS:
How do you address the unique developmental and emotional needs of children and adolescents with epilepsy?

[00:07:25] Dr. David Bieber:
Epilepsy is much more than seizures. It comes with significant psychosocial, emotional and cognitive challenges and is often associated with anxiety, depression and ADHD.

Our center is built around that understanding. In addition to physicians and nurse practitioners, we have an embedded neuropsychologist, close partnerships with psychiatry, social workers who help families access resources and therapists who support emotional health. Epilepsy is also more common in lower socioeconomic populations, and our social workers play a critical role in helping families navigate complex systems of care.

[00:08:51] Erin Spain, MS:
Can you walk us through what the journey looks like for a family, from referral through ongoing care?

[00:09:00] Dr. David Bieber:
The journey often starts long before families reach us. It can take years for children to receive the correct diagnosis because seizures can look very different and are sometimes misdiagnosed. It may take two years or more for families to reach a specialized epilepsy center.

Once families arrive here, the process becomes more streamlined. Our administrative team helps schedule appointments, our nurses guide families through initial questions and our epilepsy providers work with families to determine which tests and treatments are needed. Once you’re here, there’s a large team working together to support you.

[00:10:01] Erin Spain, MS:
There’s clearly a lot happening behind the scenes to design each treatment plan.

[00:10:16] Dr. David Bieber:
Absolutely. There are many moving parts. We hold surgical conferences with radiologists, neurosurgeons, epileptologists, psychiatrists and psychologists to review cases. We also have weekly multidisciplinary meetings focused on quality-of-life concerns beyond seizures, led by social workers, psychologists and psychiatry.

In addition, we meet regularly to review complex EEGs, and our nurses are constantly working behind the scenes to support families with school forms, sports clearance and daily needs.

[00:11:30] Erin Spain, MS:
What kinds of outcomes have you seen for children who undergo epilepsy surgery?

[00:11:44] Dr. David Bieber:
Some of the most powerful outcomes are children who go from having multiple seizures a day to being seizure-free for years after surgery. That’s not the case for everyone, especially for children with genetic or very complex epilepsy syndromes, but even reducing seizure burden can dramatically improve quality of life.

One of the most memorable moments for me was watching a patient attend high school graduation after years of uncertainty due to frequent seizures. Even when we can’t achieve complete seizure freedom, we can still make a meaningful difference in daily life.

[00:13:15] Erin Spain, MS:
Innovation and research are also a big part of your work. Can you talk about that?

[00:13:25] Dr. David Bieber:
My area of focus is implantable electrical stimulation devices, ranging from vagal nerve stimulators to devices implanted directly in the brain. These devices can sometimes be more effective than medication alone.

There is still a great deal to learn about how to best use this technology. My goal is to help individualize treatment so we can select the right device and settings for each patient based on their unique epilepsy.

[00:16:22] Erin Spain, MS:
You’re also involved in global health efforts. Can you tell us about that work?

[00:16:50] Dr. David Bieber:
Much of that work was inspired by Dr. Sandi Lam [Lurie Children’s Division Head of Neurosurgery]. We’ve partnered with a pediatric hospital in Uganda to help build their neurology and epilepsy surgery program through education, collaboration and training. The goal is to empower local teams so they can provide high-quality care independently.

It’s been incredibly rewarding to watch that program grow and succeed.

[00:18:05] Erin Spain, MS:
Looking ahead, what’s your vision for pediatric epilepsy care over the next five to 10 years?

[00:18:15] Dr. David Bieber:
Access to care is one of the biggest challenges. The sooner children receive appropriate treatment, the better their long-term outcomes. Education and awareness are critical.

My other focus is personalized care, using data and new technologies to match the right treatment to the right patient as early as possible.

[00:19:01] Erin Spain, MS:
What message would you like to leave with families coming to the center for the first time?

[00:19:09] Dr. David Bieber:
We’ll be here for you. If you need anything or have questions, reach out and we’ll figure it out together.

[00:19:16] Erin Spain, MS:
Dr. David Bieber, thank you so much for being on the show.

[00:19:19] Dr. David Bieber:
It was my pleasure. Thanks for having me.

[00:19:21] Erin Spain, MS:
For more information, including how to make a referral or schedule an appointment, visit luriechildrens.org.

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