Nearly a decade ago, St. Louis Children’s Hospital was one of the first to use an innovative procedure to cure pediatric epilepsy. As we celebrate 30 years as a system, we’re looking back at the groundbreaking innovations that cleared the way for the extraordinary care our patients—and everyone—deserves.
Sophia Griffin, like most teenagers, just wanted to learn to drive. She wanted to hang out with friends, attend school regularly and play flute in the marching band.
Until age 14, all of these seemed impossible. Sophia suffered from epilepsy that for years disrupted her life and put severe limitations on her future. But after receiving a groundbreaking procedure from the pediatric neurology team at St. Louis Children’s Hospital, Sophia, now 18, is seizure free.
A mind, interrupted
Sophia’s parents believe she was having episodes since she was a toddler. “She would get upset, have headaches, stare off into space,” said Amy Griffin, Sophia’s mother. “It was around eight years old that she could vocalize what’s happening. She’d say, ‘I’m dizzy, I don’t feel good.’”
When she collapsed during a soccer game at age nine, she was referred to St. Louis Children’s Hospital.
Kristin Guilliams, MD, a Washington University pediatric neurologist at St. Louis Children’s, identified the source of Griffin’s seizures: a small stroke that likely occurred when she was an infant and that was so mild that no one knew it happened. Sophia was diagnosed with epilepsy and started anti-seizure medications.
But as time went on, the medications became less effective. Sophia still experienced seizures during school that embarrassed her, made her sick and miss class. Her younger brother, Luke, was deputized to watch her when her parents needed to be out of the house. Her future seemed to be uncertain.
“I always felt like I was a burden to everybody because I would interrupt their life,” Sophia said. “And I thought that if I wasn't ever able to drive, then I'd always be interrupting them.”
“The results were stunning”
Sophia was nearing medication resistance, meaning two different medications at their maximum dosage had failed to control her seizures, and other options were needed as soon as possible. Her parents pushed relentlessly for better answers for their daughter’s condition, and finally got them when Sophia was referred to Robin Ryther, MD, PhD, another pediatric neurologist at St. Louis Children’s.
St. Louis Children’s was one of the few institutions in the nation using a groundbreaking new technology called stereo EEG. The procedure was the key to her cure.
Stereoelectroencephalography, or stereo EEG, is a diagnostic procedure where small holes are made in the skull, and very fine electrode needles are placed in the brain with robotic assistance. The needles record seizures and map out the centers of the brain. If successful, neurosurgeons can perform surgery to remove the damaged brain tissue while minimizing the risk of removing healthy tissue.
“As neurosurgeons, we don’t do a lot of surgeries that are purely diagnostic,” said Jarod Roland, MD, a Washington University pediatric neurosurgeon who was a surgical fellow on Sophia’s case. “The benefit is hopefully an answer that then leads you to the next step towards making these seizures go away.”
When Sophia was being evaluated, only St. Louis Children’s and a few other institutions had the capability to perform stereo EEG procedures. The alternative was electrocorticography (ECoG), in which a large section of the skull would be removed so electrodes could be placed. ECoG can be effective (and is the right procedure for some patients), but it comes with a higher risk for infection, and causes swelling, nausea and more post-operative pain than stereo EEG. Stereo EEG also offers the gift of time.
“ECoG is a bigger surgery, and you kind of felt that you were under the gun and committed to doing that second stage of surgery during that same hospitalization,” Roland said. “We really love stereo EEG because it doesn’t commit you to doing that definitive procedure right away. It gives you and the family time to absorb the information, think about it and decide how they want to proceed if you have more than one option.”
Understandably, the Griffins were nervous about their daughter going through this relatively new procedure. But after reviewing all the options, confidence in their care team won out, and they decided to have Sophia undergo stereo EEG.
“We were nervous, but it was the only way they would be able to go forward and to tell what was being affected when,” said Amy. “It was scary. But you put your faith in everyone around you, and it worked.”
The results were stunning. The electrodes pinpointed the location of Sophia’s brain where the seizures were originating. It was close to, but not in the motor center of, the brain—which meant it was possible for neurosurgeons to remove it without causing any disability.
“Dr. Ryther came into one of our visits and said not only do we think we got it, we think we can cure it,” said Marc Griffin, Sophia’s father.
Sophia underwent surgery to remove the damaged portion of her brain in December 2018. She was in the hospital for two days. She was home in time for Christmas and doctors began the process of weaning her off anti-seizure medications over a period of two years.
She had one episode of aura (a “baby seizure”) a few weeks after the surgery. After that, nothing.
She never had a seizure again. Stereo EEG is now used widely across the United States.
Sophia is now 18 and graduated from high school with additional college credits. She can drive. She played flute in the marching band. She spends her time in the gym lifting weights, hanging out with her friends and shopping. She can be alone without fear. She had her last appointment at St. Louis Children’s last summer.
“I like nothing better than seeing my patients no longer need a neurologist,” Ryther said. “Hopefully for the rest of her life she will never have another seizure, and never have to be on seizure medications either.”
Sophia and her family say they are tremendously grateful to the team at St. Louis Children’s for their tireless work, and for the opportunity to try this new technology, which has gone on to help other children and adults with epilepsy.
“When you talk about Children’s, we just owe so much to them,” Marc said. “It was just extraordinary care. There is no other way to put it.”
Sophia said she was happy to have the opportunity to speak about her experience and educate others about stereo EEG.
“Don’t give up,” Sophia said. “Especially if you get the opportunity at Children’s. Mainly, just don’t give up hope.”
Learn more about the St. Louis Children’s Epilepsy Center.