Teen with Frightening Form of Epilepsy Now One Year Seizure Free
Patient's rare behavior leads Cook Children's physician to diagnosis
Sitting outside of a movie theater, Damian Wells hoped he’d embarrassed himself for the last time.
Moments earlier, the 15-year-old Weatherford, Texas teen was watching a movie with his younger sisters when all of the sudden, a fit of cursing and yelling came over him. He wasn’t doing it on purpose, but he couldn’t stop. The strangers staring at him didn’t know what was happening.
Feeling he had no other choice, it was then that Damian decided to stop going out in public.
“Everyone in the theater began pointing and laughing at him. People didn’t get it, they looked at him like he was crazy,” said Patricia Wells, Damian’s mother.
Being misunderstood is something Patricia had grown used to over the years of caring for Damian. Teachers, family members and even some doctors couldn’t comprehend how a boy who seemed so normal one moment could have frightening, emotional outbursts for no apparent reason the next.
WARNING - Some may find this video difficult to watch. It shows Damian Wells during a seizure.
It’s hard to say how Damian ended up at this point.
At the age of 5, he was diagnosed with epilepsy. Patricia remembers holding her little boy as he would scream, a look of terror on his face. She used to call these spells, but in reality they were seizures. The medication he was prescribed helped keep the seizures at bay for many years, but something changed around the time he turned 12.
“He could be watching the Disney Channel and he would go into a rage, just out of the blue,” said Patricia. “It was like watching a horror movie and your child was right in the middle of it.”
Damian underwent an electroencephalogram (EEG), used to detect abnormal electrical activities in the brain. The test should have revealed if the fits were caused by epilepsy. It didn’t. Instead, doctors were left with little explanation and suspected his problems were psychological.
“I knew that couldn’t be right,” said Patricia. “Over time, we were told he had Tourette’s, PTSD (post-traumatic stress disorder) and many other mental disorders. None of them ever made sense.”
Damian’s life began to deteriorate. He experienced up to 50 fits a day, and by the tenth grade could no longer go to school. Scared he would hurt someone or himself, his family turned to a psychological facility for help. Shortly after, Damian ended up in the Pediatric Intensive Care Unit (PICU) at Cook Children’s. He’d been given a toxic dose of a drug used to treat behavioral issues.
While he didn’t know it at the time, this hospital stay would be the turning point for Damian.
This would be the first time he’d meet Scott Perry, M.D. an epileptologist and medical director of the John and Jane Justin Neurosciences Center at Cook Children’s.
“I was consulted by the PICU to check on a child they believed had Tourette’s,” said Dr. Perry. “Once I met the family, I realized that wasn’t the case. They described a look he would get right before a fit. It was a distinct frown, followed by fidgeting and cursing. That information was key.”
The frown they were describing is called Chapeau de gendarme, a tell-tale sign of frontal lobe seizures.
Because Damian had this stereotyped behavior (i.e. he always had a frown, followed by fidgeting, followed by cursing), Dr. Perry was confident epilepsy was to blame. He just had to prove it.
Once again, Damian underwent an EEG and once again, it didn’t reveal much. Dr. Perry wasn’t giving up though. He ordered more tests and compared those tests to the EEG results.
“I knew I was looking for something in the frontal lobe of the brain because of his stereotyped behaviors, the brief duration of each event, and the circumstances in which it occurred. When seizures come from the frontal lobe, strange, hyperactive behaviors develop,” said Dr. Perry. “I’ve never seen anyone curse during a seizure before, though, so that was unique.”
Dr. Perry’s suspicions were right. Using various tests, he was finally able to pinpoint the very spot in Damian’s brain where the seizures were occurring.
“As a mom, I spent every day afraid I was going to lose my son,” said Patricia. “Dr. Perry always said, ‘I’m going to fix this, I’m going to figure this out,’ and he did. He’s an angel. He saved my son’s life.”
In September 2015, Damian underwent a brain resection, meaning the portion of his brain where the seizures were occurring was removed.
“I was scared. I really didn’t want to do it but I knew I would never be able to live a normal life if I didn’t,” said Damian.
The section that was taken out was only about 3 centimeters long, but having it removed has made a world of difference for Damian. He hasn’t had a single seizure since.
He’s a senior in high school now with plans to graduate early. He’s also being weaned off his seizure medication and if all goes well, he’ll be working toward a driver’s license soon.
“If there’s one thing I could tell people, it’s don’t underestimate someone with epilepsy,” said Patricia. “And if you’re a parent like me, don’t ever give up.”
“The moral of the story is, it’s all about the story,” said Dr. Perry. “Damian’s parents said he had this look on his face every time, that’s what I needed to know.”
- Scott Perry, M.D.
- Jane and John Justin Neurosciences Center
- Cook Children's plays vital role in successful CBD study involving epilepsy patients
- Drug in Cook Children's epilepsy trial shows positive results in separate trial
- Texas legalizes non-euphoric cannabidiol for seizures in epileptic patients
- Cook Children's Epilepsy Monitoring Unit