Diego’s story: Finding seizure control and thriving in college

Diego has always been someone who likes to think deeply and figure out how things work. His curious nature has shaped much of his life – from helping his dad fix cars, to learning multiple musical instruments (piano, guitar, bassoon and euphonium), to leading his high school robotics team. Today, it’s what drew him to study mechanical engineering in college.

Diego also lives with epilepsy, a neurological condition. But epilepsy has never defined him – or stopped him from pursuing his interests and goals.

“Diego and I connected because we both have very cerebral personalities,” says Afsaneh Talai, M.D., Pediatric Neurologist at Children’s Health℠ and Assistant Professor at UT Southwestern. “When he came to me at age 16, I was very motivated to help him continue to play in the marching band in high school and pursue his dream of becoming an engineer.”

Now a college sophomore, Diego attends classes including calculus and physics, soaking up new information that may one day help him pursue a career in aerospace engineering. He plays the euphonium in his college’s pep band. And like many college students, he’s also enjoying this chapter of life – making new friends, having bonfires on the beach and, as he puts it, “just hanging out, grabbing food and living life.”

“There are a lot of myths about epilepsy and a lot of people think epilepsy is only about the big, scary tonic-clonic seizures,” says Diego. “But there are also seizures that are hardly noticeable. After epilepsy surgery, I only have a few very mild seizures a day and I’m able to go to college, do my work and drive – without any issues.”

A broken arm that led to an epilepsy diagnosis

Throughout elementary school, Diego experienced small seizures, so subtle that they went undiagnosed. But in middle school, he began having larger seizures. And then, he broke his arm playing basketball.

“Somehow, the doctors’ questions got me talking about these spaced-out moments I’d been having,” Diego says. “They ran some tests, figured out I had epilepsy and referred me to neurology.”

The type of epilepsy Diego has is called focal epilepsy, which means just one specific part of his brain has a seizure, as opposed to generalized epilepsy, which involves the whole brain.

“Diego’s epilepsy is caused by a dysplasia, which is an area of the brain that formed differently,” explains Dr. Talai. “That area becomes irritable and triggers seizures.”

Diego came to Dr. Talai for a second opinion after trying several epilepsy medications that were not able to control his seizures well. Some of his daily seizures were short and mild, but there were also bigger, longer ones that involved shaking of his whole body.

Dr. Talai adjusted his medications and explored additional options. Still, none of the standard treatments controlled his seizures enough.

“When we try several medications and cannot achieve good seizure control, we start talking to patients and families about epilepsy surgery with an optional procedure called responsive neurostimulator (RNS), which we’ve been successfully offering here at Children’s Health for several years,” she says.

Deciding to pursue RNS treatment

For children with dysplasia, there are typically two options[AT1] to consider: surgery to remove the affected brain tissue, or RNS – a small device placed in the brain that’s sometimes called a “pacemaker for the brain.” The device monitors seizure activity and then delivers targeted stimulation to interrupt seizures as they begin.

After Diego completed a comprehensive EEG to pinpoint where his seizures were coming from, it became clear that surgery wasn’t a safe option.

“Diego’s seizures originate from a part of the brain responsible for movement,” says Dr. Talai. “Removing that tissue could have left him weak on one side of his body.”

The alternative – RNS – felt like a solid option to Diego.

His mom was understandably more hesitant about the idea of implanting a device – smaller than the size of a playing card – into her son’s brain.

After the Level IV Pediatric Epilepsy Center team – including experts in radiology, psychology and neurosurgery – carefully reviewed Diego’s EEG and MRI results, Dr. Talai explained that RNS was the best option. Diego and his mom felt confident moving forward.

Far fewer seizures

After RNS implantation, Diego went from having as many as seven seizures a day to just one or two mild seizures daily.

Now, when he senses a seizure starting, Diego waves a small circular magnet – attached to his keychain – over his head to mark the seizures in the RNS.

His seizures are so mild that most people wouldn’t notice them at all. Diego may feel numbness and tingling in his face and tongue – but outwardly, there’s little sign anything is happening.

“I think my mom is the only person who can tell when I’m having one,” Diego says.

Follow-up care and transitioning to adult care

After a few days of recovery in Dallas from RNS surgery performed by Angela Vivian Price, M.D., Pediatric Neurosurgeon and Associate Professor at UT Southwestern, Diego continued to see Dr. Talai in Plano, closer to his childhood home.

And ever since surgery, each night, Diego uploads data from his RNS device – a process that takes only seconds.

“I wave a wand over my head to collect data from the mini-computer in my brain,” he explains. “Then my doctors can review it.”

That data has helped Dr. Talai and her team better understand and predict Diego’s seizures and make adjustments to the RNS device. And now, it will support his adult epilepsy care team as they monitor his medications and the RNS battery over time.

“I’m sad I don’t get to see Diego anymore now that he’s transitioned to adult care because one of the best parts of pediatric neurology is the relationships you build,: says Dr. Talai. “But I am so excited for this next stage in life for him, and the independence he has gained.”

Parting words for other kids and families

Dr. Talai is thrilled that RNS has given Diego more control over his seizures – and the freedom to thrive in college and pursue engineering.

“Seizures are uncomfortable for the people having them and they’re also not great for the brain,” she says. “Even mild seizures can cause scarring over time. Our goal is always to reduce seizures as much as possible. RNS opens up a treatment option for kids who didn’t have one before.”

Diego hopes sharing his story might help other families facing similar decisions.

And for anyone who knows someone living with epilepsy, Diego offers simple but powerful advice:

“People with epilepsy are more than just their seizures,” he says. “They’re people, too.”

Learn more

Children's Health is home to pediatric specialists with deep expertise in even the most complex forms of epilepsy. Learn more about our Level IV Pediatric Epilepsy Center and advanced epilepsy care in Dallas, Plano and Prosper.

For additional support, explore our Epilepsy 101 resources or learn more about responsive neurostimulator (RNS) treatment in our Pediatrics Insights podcast with Dr. Talai.