Brain Stimulation Curbs Teen's Worst Seizures

By Jean Yaeger

Whenever Luke Waggoner’s seizures start ramping up, his mom Ami can make a switch on her phone that changes the rhythm of electrical activity delivered to his brain.

Inside Luke’s body is a network of tech devices and wires – running from his head to his abdomen – designed to help control his seizures. Deep brain stimulation (DBS) isn’t a cure for his type of epilepsy. Instead, it’s an adaptable tool used to keep Luke’s worst seizures from getting out of hand.

Ami is amazed at how much Luke’s health and quality of life have improved since July 2021, when neurosurgeon John Honeycutt, M.D. placed a pulse generator in his chest delivering electrical impulses to leads implanted in his brain.

Prior to receiving the DBS system, cluster seizures caused Luke to need emergency care at the hospital several times a month. Now, at age 16, he still has seizures every day. But the seizures no longer escalate to the point where he has to be hospitalized.

"Just to keep us out of the hospital has been amazing,” Ami said. “It’s been a life-changer for Luke.”

Luke’s family in Arlington works closely with the specialists at the Jane and John Justin Neurosciences Center at Cook Children’s in Fort Worth. They communicate frequently to track how Luke responds to different DBS settings. 

Warren Marks, M.D., director of the Movement Disorders Program at Cook Children’s, described DBS as a way to send small electrical impulses to specific areas of the brain. That stimulation affects the abnormal electrical bursts that cause seizures in Luke and other people with epilepsy. In simplest terms … DBS changes the brain’s electrical waves in hopes of reducing the misfires that lead to seizures. 

“I would think about DBS as being similar to medications, except it’s extremely targeted. Therefore, you can reduce most of the side effects that you see with medication,” Dr. Marks said. “We’re putting the impulses only where we want the impulses to be. We are not bathing the brain with electricity like we bathe the brain when we give medications.”   

Luke takes four medications daily, down from five prior to starting DBS.  Those meds likely contribute to Luke’s grogginess and slurred speech. That’s why his family and doctors hope he’ll be able to scale back even more on the dosage, as long as DBS continues to be effective. 

Cynthia Keator, M.D., medical director of the Epilepsy Monitoring Unit at Cook Children’s, said DBS not only gives Luke better seizure control, but clearer thinking and more independence. She said yes last year when Luke asked her if he could go to Disneyland, the farthest he’s ever traveled from Cook Children’s.

“The impact of this is not just immediate, but it’s continued,” Dr. Keator said. “Granted, he still has seizures, but the improvement is giving him freedom that he didn’t have before.”

An epilepsy awareness campaign called Purple Day occurs every year on March 26. On this Purple Day we wanted to highlight the resilience that Luke and his family have shown in managing his care collaboratively with their medical team. Here’s the update.

Treatments for Epilepsy

The U.S. Centers for Disease Control and Prevention estimates that 370,000 children nationwide have epilepsy. The chronic disorder has no cure and often no identifiable cause.

Luke was diagnosed at age 5 with generalized epilepsy affecting both hemispheres of his brain. He experiences a variety of seizures; they might cause muscle spasms, sudden stiffness, or blank staring into space. Sometimes Luke won’t be able to speak, but he can give a thumbs up. 

Medication successfully controls the seizures in up to 80% of children with epilepsy. But not in Luke’s case. He has Lennox-Gastaut syndrome, which is especially difficult to control. He received a vagus nerve stimulator (VNS), a pacemaker-like device implanted in his chest. Even with the VNS and medications, Luke continued the cycle of big seizures and frequent hospitalization. 

By 2021 it looked like Luke’s next course would be a corpus callosotomy, an irreversible procedure. Corpus callosotomy severs most of the connections between the two halves of the brain, aiming to prevent the most dangerous and disabling seizures. That’s when the doctors at Cook Children’s proposed a less invasive option. 

That option was DBS, which the movement disorders specialists at Cook Children’s had already utilized since 2007 for about 150 patients with a condition called dystonia. DBS would be a new therapy for pediatric epilepsy. The Waggoners agreed to give it a try.

So in July 2021, Luke became the first pediatric patient in North Texas to undergo DBS for intractable epilepsy. He’s believed to be the first child in the United States to receive a newly approved sensing lead technology DBS system for epilepsy.

The network has three main components:

• Leads (pronounced “leeds”) – tiny electrodes embedded in Luke’s thalamus, the brain’s relay center for transmitting signals. The leads deliver electricity directly to the source of his disruptive waves. They’re held in place by caps screwed into Luke’s skull.
• Generator – a mini-computer under the skin of Luke’s abdomen. Wires run from the generator through his neck to connect to the leads.
• Programmer – a tablet that regulates the strength and frequency of electrical impulses per second. When he needs an adjustment, Luke holds the programmer at his abdomen, next to the generator, and his mom changes the setting from her phone. 

“With a corpus callosotomy, you essentially take out most of the connections between the two halves of the brain so that they can’t cross signals from one side to the other,” Dr. Marks said. “What we tried to do with the DBS is to simulate that electrically without going through the actual surgical disconnection.”   

Showing Improvement

Dr. Marks and Dr. Keator continue to monitor Luke to determine his tolerance for different electrical amplitudes and speeds. When the Waggoners go in for appointments, Dr. Marks will tweak the settings on Ami’s phone to try new modes, such as synchronized versus non-synchronized.

Ami said Luke reacts best to high speed and high amplitude settings. But turning the device too high also causes problems. Luke had jerky legs, pain in his teeth and trouble sleeping when the amplitude was too much. 

His mom knows to change the mode whenever Luke’s seizures start to cluster. It usually happens every three or four weeks.

“All you’re trying to do with those different synchronizations is trick the brain into stopping the seizures,” she said.

She doesn’t rush into mode changes because there are temporary side effects to making the switch. She waits at first to see if the seizures ease up on their own. Meanwhile, she always takes detailed notes to track Luke’s condition.

“It’s a whole lot of trial and error and a huge communication between me and the physicians,” she said of DBS. “And it’s a huge commitment for the family. It’s not just something you set and forget.”

Luke, who is homeschooled, has some cognitive delays. His mom says he’s on the level of about 7 or 8 years old. He tires quickly and has trouble with coordination of his leg muscles, so he sometimes uses a wheelchair.

With new energy thanks to DBS, Luke has been able to get out more. He likes visiting museums, playing Miracle League baseball and exploring his passion for trains. The family’s 2023 trip to Disneyland had a few hiccups, but gave them the confidence to travel again.

Ami would advise other parents to look into the therapy -- but understand that it’s a risk and an ongoing commitment. A family considering DBS would also need a strong relationship with their child’s medical team.

“You have to be really, really patient,” Ami said. “Don’t be afraid, but just go into it knowing it’s a lot of work, and it’s not curative. If it has the success that it had on Luke, it’s so worth it.”

She thanked the Cook Children’s neurology staff for never giving up on Luke.

“He amazes me every day. He is a true blessing! He is where he is today because of the great care he has received and continues to receive at Cook Children’s,” she said. “This isn’t easy, but we find joy every moment of every day.”

Dr. Keator and Dr. Marks, meanwhile, weren’t sure what to expect from DBS in an epilepsy patient. They’re both pleased with Luke’s outcome so far. And they predict that the therapy for future patients will continue to be refined as the data and research progress.  

“We have to remember to thank Luke and his family for wanting to try this,” Dr. Marks said. “We are learning as much as they are about this, and so this is definitely a journey we are taking together.”

Dr. Keator pointed out Luke’s sense of humor and cooperative spirit.

“He’s fun and full of life, and no challenge is too big,” Dr. Keator said. “He is just always up for anything that we throw at him. He’s an incredible person.”

Family Advisory Council

Cook Children’s Health Care System has almost 20 Family Advisory Councils that give input and share ideas for improvements. The councils are made up of trained volunteers, mostly moms, who advocate for patients and one another.

The Neurology Family Advisory Council went inactive a few years ago early into the COVID-19 pandemic. But Ami Waggoner’s bringing it back. Ami previously served on the Medical Family Advisory Council and now has ideas for neurology, especially in regard to staff recognition, donations and parent mentoring. Her experiences seeking epilepsy care for Luke have given her some perspectives that could benefit others at Cook Children’s, she said. 

“This isn't an easy journey,” Ami said. “What's made it easier for us is we found our community now. I feel like there's strength in numbers. And we're all here to just make it best for our families and our children.”

Natalie Dorsey, coordinator for the Parents as Partners program at Cook Children’s, said proposals from the various Family Advisory Councils have yielded new educational resources, welcome folders, open house events, newsletters and more. Volunteers must be objective, protective of confidentiality, good listeners, empathic and passionate for Cook Children’s.

Dorsey said the role of the Family Advisory Councils helps ensure that Cook Children’s continues to provide exceptional care. 

“’I feel heard, I feel respected, I feel dignified. I feel like I'm on a team here.’ Those are the things our parents say all the time,” Dorsey said. “And if we didn't have councils, I don't think we would have that same environment.”

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