Cortical Dysplasia, Medication Resistant Epilepsy Livvy Williams
Livvy Williams is a confident 5-year-old diagnosed with cortical dysplasia, a condition in which the top layer of the brain does not form properly. Cortical dysplasia is one of the most common causes of epilepsy and often does not respond well to medication.
Livvy was 16 months old when she had her first seizure. “We were at the park playing when I noticed something different about her,” said Livvy’s mother, Stormy. “Livvy was like any other toddler who would fall when she walks, but this was different.”
Later at home, Stormy noticed Livvy’s face looked red and frozen as if she was holding her breath. Nothing like this had happened before. Stormy and husband Bruce watched Livvy closely and decided to take her to their local emergency room.
Livvy was admitted and evaluated by a pediatric neurologist. She was having 30 to 40 seizures a day. “They last about 10 seconds. She twitches and her arms and legs straighten out and get stiff,” Stormy said. “When she comes out of it, she knows she had one, and she’s a little confused and dizzy afterwards.” After several tests, Livvy was diagnosed with epilepsy and prescribed medication to help control her seizures. “At this point, we felt we were at a standstill and that it would be best to take her to Children’s of Alabama,” Stormy said.
At Children’s, pediatric neurologists performed multiple tests and prescribed medication that minimized Livvy’s seizures to 10 a day. “She is extremely brave and strong, very cooperative and is a pro at handling the treatment and tests,” Stormy said.
In the months ahead, Livvy’s follow-up visits at Children’s went well and her seizures eventually stopped. She attended preschool, enrolled in dance classes and rode her bike. A year later, an unexpected seizure occurred.
“The doctors told me that it was a possibility that her seizures could spike again if she got sick. She had a stomach virus and we were at the beach walking our dog when she froze up. She had two seizures that day,” Stormy said. “I called Children’s and they told me to increase her mediations.”
Livvy was prescribed new medication at her next Children’s visit. She was also evaluated for possible brain surgery, but Stormy and Bruce were advised to wait until Livvy was a little older to consider surgery.
Over the next six months, Livvy’s seizures worsened. She was unable to attend preschool or enjoy her favorite activities. It was soon discovered that Livvy’s body does not respond well to medications, known as medication-resistant epilepsy.
At the end of 2019, Livvy was re-evaluated for surgery and given the green light to proceed. “Children’s has all of the advancements and technology and we feel super confident in them,” Stormy said. “They call and check on us and always keep communication open.”
To evaluate precisely where the seizure activity is in her brain, Livvy underwent a procedure called a stereoelectroencephalography (SEEG) in February 2020. The SEEG revealed seizure activity in the right frontal and parietal lobes of her brain.
With this vital information, laser ablation surgery was scheduled, but postponed to May 2020 due to the coronavirus pandemic. Livvy is now seizure-free. Her treatment plan includes two medications daily and physical therapy and occupational therapy, which she has completed.
“She’s come a long way from not being able to walk and use her left leg. It took weeks of inpatient physical therapy and occupational therapy, and some additional therapy once we were back at home,” Stormy said.
Stormy added, “As a parent, you can fix a lot of things for your kids, but we don’t have control over this. Our goal through all of this has always been to do what we have to do to get her better. Our experience at Children’s has been a blessing and we are thankful.”