From Battling Epilepsy to Graduating at the Top of Her Class

For Katie, living with epilepsy meant feeling like she was always three conversations behind. 

The multisport athlete often describes it using an analogy: “Imagine you’re on the volleyball court sideline for a one-minute timeout, and the coach is talking to you, giving you feedback, but you can’t process it quickly enough to use it on the court when the timeout is over.”

Whether it was trouble keeping up with conversations around her, making sense of vocabulary words or explaining a concept out loud, Katie lagged when it came to processing information. 

When Katie was in the fifth grade, her mom, Anne—a teacher herself—realized she was only reading at a second-grade level.

“I was concerned about the fact that, when Katie would take written assessments, she’d do very poorly,” Anne said. “But if her teachers read something aloud to her and explained vocabulary terms to her that she didn’t know, her score would go up significantly—on the same test. So, we knew there were processing issues, but we weren’t sure what to do.”

A Long History of Seizures

Katie, now almost 20 years old, doesn’t remember much about the first time she had a seizure, but Anne recalls it vividly. It was the night of Katie’s first birthday celebration. Her family was living in Utah but visiting relatives in Indianapolis.

“My husband woke me up in the middle of the night and told me he thought Katie was having a seizure,” Anne said. “She was vomiting out of one side of her mouth. She couldn’t catch her breath. She was turning blue. We found out later that, by the time the paramedics arrived, Katie’s blood oxygen level was so low that they thought she wasn’t going to make it to the hospital.”

Thankfully, Katie responded to rescue medications to control the seizure.

“The medical team chalked it up to a febrile seizure, which is triggered by a high body temperature,” Anne said, “but we knew she hadn’t had a fever.”

The family spent two extra weeks in Indianapolis, then flew back to Utah, where Anne immediately took Katie to see her pediatrician.

“I was concerned because weird things were happening, like her lips turning blue, but he kept telling me everything I was saying was normal,” she said.

After six months, Anne requested a referral to a children’s hospital in Salt Lake City, a two-hour drive from their home. The medical team there ran tests but wasn’t able to pinpoint what was going on with Katie. Still, they prescribed her an anti-seizure medication.

That became the story of Katie’s life for more than a decade. 

“We were constantly trying different seizure medicines,” Anne said. “We went through eight medications, but nothing was working. Nothing was keeping the seizures at bay, and she was struggling with anxiety and stress.”

Eventually, when Katie was diagnosed with anxiety, depression and ADHD (attention-deficit / hyperactivity disorder), Anne and her husband, Peter, grew frustrated and decided to slowly wean her off the medication. 

“The behavioral issues disappeared,” Anne said, “but the seizures were still happening. We just didn’t know it.”

Changing Symptoms

In 2018, Peter’s work transferred him to Cincinnati. Leading up to the move, Katie, then 13, was struggling to connect socially with other students at her school. She also was suffering from up to eight or nine episodes of anxiety a day—something that had just started when she hit puberty.

“I felt stressed, and my heart would race, but no one else noticed,” Katie said. “[It would happen] throughout the day—during class, during practice, at home. I could still work when they happened at school, just at a slower pace. If I was writing something, my writing would suddenly slow down. I had no clue what was going on.”

Anne wasn’t sure either: “We wondered if she was having panic attacks due to the social situations she was trying to navigate.”

That’s when Katie needed an impacted tooth removed from her sinuses. The oral surgeon told Anne that, given Katie’s medical history, he wouldn’t perform the surgery without a release from a neurologist.

“My husband and I thought, ‘You know what? Let’s call Cincinnati Children’s and see if we can get an appointment,’” Anne said.

A Fresh Set of Eyes

In March 2018, Katie and her parents met with Ravindra Arya, MD, DM, a pediatric epileptologist in Cincinnati Children’s Division of Neurology.

Anne remembers Dr. Arya’s first words to her and Peter: “‘Are you here so Katie can have oral surgery? Or are you here to find out what’s going on with her seizures?’ I immediately responded, ‘We’re here to find out what’s going on with her seizures.’”

Dr. Arya told Anne and Peter that, if what they’d been considering panic attacks were actually seizures, there was a very low probability—lower than a 10% likelihood, in fact—that another medicine would work to control them, and they’d probably need to think about surgery.

Still, Dr. Arya wanted to rule out the possibility of panic attacks first, so he ordered a neuropsychological evaluation. The pediatric psychologist quickly confirmed that what Katie had been experiencing wasn’t related to anxiety.

“When I heard it wasn’t panic attacks, it made sense to me,” Katie said. “They seemed more random than that. It didn’t make sense that I would get stressed during math class.”

To determine where in the brain Katie’s seizures were originating, Dr. Arya first recommended a non-invasive evaluation including a variety of tests, looking at different aspects of the brain, which was followed by a stereo electroencephalogram (EEG), which involves drilling small holes through the skull and placing electrodes on the surface of the brain to measure seizure activity. The test pointed to the hippocampus—the part of the brain responsible for learning and memory—as the culprit. 

At the time, laser ablation, which uses a laser to destroy brain tissue, was not a widely used procedure in pediatric epilepsy patients. It had only been in use for two or three years, Dr. Arya said. But Katie was a perfect candidate for the procedure, which is less invasive than traditional epilepsy surgery. 

Unfortunately, the first laser ablation, performed in November 2018, didn’t work. Katie was still having multiple seizures each day, often at night.

“After the first ablation, Katie didn’t achieve seizure freedom,” Dr. Arya said. “In many cases when that happens, parents get distraught or upset. But there is no procedure for epilepsy that is 100% effective, and it didn’t mean we were out of options. It actually gave us more answers.”

Katie and her parents were patient and trusted Dr. Arya’s advice to have a second ablation to target another part of the hippocampus. It was November of 2019, and Katie was in the eighth grade. That time, the surgery was successful. Katie hasn’t had a seizure since.

Seizure-Free, Graduating with Honors

Almost immediately, Katie’s school performance began to pick up. She started adding more honors classes to her high school schedule, she got better at answering inference and opinion questions, and teachers began sending kids who were struggling with a concept to her for help.

Katie ended up second in her class, as salutatorian, and giving a speech at graduation—something that Anne described as “extremely powerful.”

“I love that Katie got up and spoke when that was her struggle all along,” she said. “But she spoke with poise. She spoke to the entire class, and not about her but about everyone’s accomplishments. I don’t know that anyone wasn’t crying. It showed her determination.”

Katie started college this fall. She says she’s interested in studying neuroscience.

Dr. Arya credits Anne and Peter for Katie’s success: “It was their trust in our team’s ability to deliver the best care for Katie that helped us get her to where she is today.”

Anne now wants other parents going through similar situations to know they’re not alone.

“For all the parents out there who are struggling right now with seizures and the feeling of no control over what can be a relentless diagnosis for your child—don’t give up,” she said. “There is so much hope in what could and can be for your child. Find the right doctor team who cares about digging deep to find a solution. It will change your life.”

(Published August 2024)