“Virginia has intractable localization related epilepsy or drug-resistant epilepsy. If we break that down, that means she has epilepsy that has been uncontrolled by two or more medications,” said M. Scott Perry, M.D., medical director of Neurology and the Genetic Epilepsy Clinic at Cook Children’s. “’Localization related’ meaning it arises from one area of the brain, as opposed to the entire brain at one time.” 

In early December, Virginia had minimally invasive brain surgery. It’s been nearly three weeks and for the first time in 16 years, she’s seizure free.

“We did laser thermal ablation. This means we used electrodes to pinpoint the problem area and used a laser fiber to burn that area of the brain,” Dr. Perry explained. “She went home the next day. Now we enter the patient waiting game to see how it’s going to go.”

Though epilepsy is common to children, Virginia’s story is unique. She says she was in 4th grade when she realized how much impact seizures had on her life. She began looking down on herself and looking at herself differently. She felt as if she wasn’t the same as her peers in a bad way.“

When I was younger, I definitely hid a lot more, because I was afraid that people would look at me a lot differently. I only really told people if they were coming to sleepover. As I got older, I told more people, mainly my friends and I began accepting it more,” Virginia said. 

As years passed, things became normal to her. She played field hockey with her friends and was able to do most of the same things as her peers. It wasn’t until her sophomore year in high school when the “different” feelings came up again, because her friends were beginning to drive. 

“I really noticed it again when everyone was getting their permits. But when I was a junior, things were back to normal again because driving was routine and not everyone was excited about it anymore,” Virginia said. 

Virginia’s mom, Kate, has been her advocate every step of the way. She said when Virginia first started having seizures, she thought she was just making a funny face. Her dad was holding her the next day, and it happened again. When they took her to the doctor, Virginia had a seizure in front of them and the neurologist. It was then that they started on a path to find out the cause.

 “It’s very hard to watch a child suffer from a disease that is tragically underfunded and tragically understudied, and under researched and misunderstood,” Kate said. 

Over the years, Virginia has failed 12 drugs. Medical professionals say if an epilepsy patient fails two drugs, it’s unlikely that any others will work. She has seen several doctors in her home state of Virginia and across the country. Doctors have tried several things with her case and could never pinpoint where the seizures were coming from. 

Virginia’s mother refused to allow her disease to hinder her from living a full life and doing everything her siblings could do. Kate says Virginia has traveled with her family extensively. She’s gone paragliding in South Africa and swimming with manta rays in Hawaii. She ran cross country and is even on a competitive rock climbing team. All things they knew were a risk, but a risk they were willing to take.

“I would rather have a child with a broken arm than a broken spirit,” Kate said.

While searching Twitter in the fall of 2019, Kate came across Dr. Perry’s professional profile where he regularly posts about advancements in treatment for epilepsy. She decided to seek his opinion. After securing an appointment, mother and daughter flew to Texas. In her initial appointments, Dr. Perry ran tests to see Virginia’s seizures for himself. 

“From the beginning, it felt like a very collaborative relationship and a very transparent relationship, and that just stood out to me from other patient and caregiver experiences that we’ve had in the past,” Kate said. “I felt like everyone was familiar with her case history, everyone knew why we were there, everyone knew what we were hoping for. Again, not overpromising and not being overly optimistic, but really understanding our goals and what we had already tried." 

Virginia agrees that Cook Children’s was different from other appointments she’d been to. She was happy to finally have doctors that focused solely on her case.

“At Cook Children’s, they didn’t compare my case to anyone else, but looked at it as a singular case. I think that was the difference and they also had a more positive outlook. All of the doctors were good at explaining things in a way that I could understand them, but also not making me feel dumb,” Virginia said. 

After observations, running tests, and reviewing hundreds of pages of paperwork from Virginia’s doctors over the years, Dr. Perry was confident that he’d pinpointed where the seizures were coming from. He then recommended her for epilepsy surgery. Virginia was able to have her surgery and fly home two days later.

While visiting Cook Children’s, Kate and Virginia also met Cynthia Keator, M.D., medical director of the Epilepsy Monitoring Unit at Cook Children’s who made an impact on the Cooper family. Kate says the moment she met Dr. Keator, she felt immediately encouraged and appreciated how transparent she was about what she was seeing in Virginia.

Dr. Keator said she knew from the minute she saw the data on Virginia’s EEG that she could help her, and as a doctor that is always the best feeling.

“There is something about teenagers in general and just knowing that they’ve got the rest of their life ahead of them. You’re excited to get to their breakthrough and get them better, so they can start to have an independent life,” Dr. Keator said.

Since returning home, Virginia has gone back to school to complete her senior year and study for the ACT exam. While she was at Cook Children’s waiting for her surgery, she was excited to receive two college acceptance letters. She will soon apply for her top choice, McGill University, in Montreal where she hopes to attend next year. 

Virginia says it still hasn’t hit her that she’s had a surgery that could potentially change her life. She says the best part is the hope of having a normal college experience. 

“If it works, I don’t have to tell my professors about it, and my roommates, or my friends and have that complicate my whole experience too,” Virginia said.

Dr. Perry hopes the surgery was all Virginia needs to live a normal life and that her story is a testament to why epilepsy surgery should be considered more often. 

“People don’t pursue epilepsy surgery, despite it being the one thing we can do for epilepsy where we might be able to cure it and get you off of medication,” he said. “Epilepsy surgery is vastly underutilized.” 

Dr. Perry’s ultimate goal is for her to be seizure free, off of medication, and living happily ever after.

 Kate and Virginia both agree that having a support system while dealing with epilepsy is important. Having people who are there to listen with no judgement and willing to jump in when you need them most has been helpful to them both. 

“It’s really important to find one or two super close friends who you can talk through everything with and never feel insecure when talking to them,” Virginia said. “It really helps.”

As a mother who’s dealt with epilepsy for 16 years, Kate has three pieces of advice that she hopes will help other parents:

1. Build your support group. Seek out people who might be going through something similar and that you can lean on.

2. Take care of yourself. Do things for yourself and practice self-care.

3. Listen to your gut. Don’t be afraid to seek guidance from other physicians who specialize in your child’s disorder.

Virginia has one piece of advice for anyone dealing with epilepsy.

 “Never to doubt yourself. Just because sometimes your life is a little bit harder for you than for others doesn’t mean you can’t do the exact same things as they can or get as far as, or further in life.”

But nine months ago, that choice was anything but simple.

Despite trials of at least six different medications – nothing stopped Owen’s daily seizures. The Neurosciences team at Cook Children’s decided to make a pitch that’s almost too much for any parent to comprehend.

Owen’s seizures are unique in that they arise from a large area of his brain. The epilepsy team believed his best chance of becoming seizure-free was to disconnect the left side of his brain from the right. They wanted to sever the fibers (corpus callosum) that connect the two sides of Owen’s brain.

One traditional approach to this type of surgery is called corpus callosotomy, which often involves a large incision on the patient’s skin, opening a large hole in the skull, and then cutting the corpus callosum in half. While previously considered by many to be the “gold standard,” with good seizure control rates after surgery, it involves a lengthy recovery in the hospital and then at home.

While Owen’s family wanted better seizure control, they were reasonably hesitant to undertake such an invasive surgery.

Fortunately, Cook Children’s neurosurgeon, Daniel Hansen, M.D., was one of only a few pediatric neurosurgeons in the United States, who has experience doing similar procedures using less invasive endoscopic techniques.

Endoscopes (small video cameras with channels for operating tools) allow the surgeon to perform surgery through much smaller openings in the skull. When successful, this means a smaller incision, less surgical blood loss, quicker operating time, shorter hospital recovery, and the same chance of seizure freedom post-operatively as if undergoing a more traditional open surgery.

Owen’s family understood that endoscopic epilepsy surgery is the leading edge of advancement and their child would be the first such surgery at Cook Children’s, and one of only a few in the country that have been reported.

“Giving their consent and placing trust in our team, we went forward with surgery,” Dr. Hansen said. “The operation itself went well, we were able to completely disconnect the two hemispheres of the child’s brain using a bony opening not much larger than an inch square, and his recovery in the hospital was quick.”

A quick hospital stay was welcome news to Owen’s family. He’d already spent too much time at Cook Children’s fighting for his young life.

Owen’s story really begins at 8 months of age when his parents noticed weakness on his right side. His parents knew something wasn’t right with their son and they made an appointment for Monday with their pediatrician. But over the weekend they became afraid when Owen stopped using the right side of his body.

His parents rushed Owen to the nearest emergency room in Cleburne, Texas. From there, he was airlifted to Cook Children’s by CareFlight.

“We were so fortunate,” Allison Turner, Owen’s mom, said. “That's the day we met (Kenneth Heym, M.D.), who would become Owen’s oncologist. He happened to be on call that weekend. He met us there. He told us at that point, our kid was one of the sickest in the hospital. If we had waited to bring him in until the next day, Owen may not have made it.”

His initial scans showed a large stroke in the left side of his brain which soon was discovered to be related to a new diagnosis of acute myeloid leukemia. Owen endured four phases of chemotherapy and fortunately entered remission where he remains today.

While his stroke left him with right-sided weakness requiring ongoing aggressive therapy, it was his seizures that proved to be the most debilitating obstacle to overcome.

Owen’s first seizures occurred in the days following the stroke, but they were initially controlled with medication. He was able to stop taking medication shortly after his initial diagnosis, but the seizures returned around age 3.

His parents say Owen’s seizures involved periods of suddenly pausing in activity with a decreased response to them and sometimes unprovoked laughter. Other events were described as a sudden fall to the ground or stiffening and shaking of his arms and legs posing a significant risk of injury. Despite the trials of at least six different medications – nothing helped his daily seizures.

His neurologist at Cook Children’s, Howard Kelfer, M.D., referred Owen to the Cook Children's Comprehensive Epilepsy Program for epilepsy surgery evaluation.

Once Cynthia Keator, M.D., took over his case, she began a workup to determine where in the brain his seizures were arising, knowing the likelihood of seizure control with medications was minimal. Owen’s evaluation in the EMU (epilepsy monitoring unit) captured many seizures starting from the left hemisphere. Additional evaluation with a MEG (magnetoencephalogram) scan showed multiple areas of abnormal electrical activity throughout the left hemisphere both in front and behind the region of his prior stroke.

With options running out, the Neurosciences team suggested the trailblazing endoscopic surgery and introduced the family to Dr. Hansen.

Owen is now 9 months out of surgery and the family has noticed no seizures since. He’s an active young boy, playing with his monster trucks, who is making steady strides in kindergarten now that his uncontrolled seizures have stopped. While it remains too early to speak to years of seizure control, doctors say this is an encouraging start.

“After everything we’ve been through, I don’t know if you ever say you are comfortable. I guess we’ll always be on guard,” Allison said. “But we’re a little more relaxed now. Before the surgery, we never knew when a seizure would come on. Owen couldn’t go outside and play without one of us with him.”

Given the successful outcome with Owen, Cook Children’s has since performed two additional endoscopic procedures with similar favorable results. The Epilepsy team hopes to expand the number of children who are candidates for this type of surgery in the future. Such children will have medically refractory epilepsy and will have undergone a thorough evaluation by the team at Cook Children’s. Potential surgeries that can be performed endoscopically include complex surgeries including corpus callosotomy, single lobe disconnections, focal lesion resection, and functional hemispherectomy. As the team’s experience grows with this technology and technique, its use may expand beyond this short list.

And in the process changing more lives for the better.

“It has been such a relief for us. It was a huge decision to disconnect his brain. Just saying those words … But this was the best thing for him,” Allison said. “He has flourished. He’s made improvements by leaps and bounds. He has progressed in everything. His speech, school work, everything. His whole body is functioning with just the use of one side of his brain. He can’t throw a football with his right hand and he has problems with his fingers on his right hand. He can’t pick up a Cheerio with his right hand. But other than that, I don’t know if anyone would notice a difference in him and any other child.”