Calming Seizures

Neurologists at Le Bonheur Children’s Hospital are leading a new pediatric clinical trial of cannabidiol (CBD), a compound extract from a cannabis plant, which they hope will help minimize the frequency and length of seizures for children with epilepsy.

The new trial, which is currently in its third phase, studies the potential benefits of CBD for children with epilepsy. Le Bonheur started its study of CBD drug treatment in 2015 and is the only children’s hospital in Tennessee to provide such care.

Results are promising. Researchers have found some children who have been using CBD have had fewer seizures and that those seizures are shorter in duration, said James Wheless, MD, co-director of Le Bonheur’s Neuroscience Institute.

“In our CBD trials, some of the children have had a sustained reduction in seizure number, with one child doing well enough to lower the other seizure medication,” Wheless said.

To enroll in the trial, each child must be treatment-resistant to at least three epilepsy medications, parents must record their child’s seizure frequency and quality of life and the patient can’t have any other medical issues that would interfere with the monitoring and clinical drug trial.

During the first phase of the drug trial, children were hospitalized at Le Bonheur for 11 days and given the oral medication daily. The second phase began when the children were released from Le Bonheur and their parents began administering the medication. The children will be monitored by their doctors for one year.

The Neuroscience Institute’s lead Clinical Research Coordinator Tracee Ridley-Pryor, MSN, RN, CCRC and her team have closely monitored the new drug‘s effects on children. The CBD compound contains less than 1 percent of tetrahydrocannabinol (THC), the chemical responsible for most of marijuana’s psychological effects, and does not contain enough to cause psychoactivity, Ridley-Pryor said. Researchers have found CBD, as a supplemental treatment for children suffering from epilepsy.

“There has been a significant change in the number of seizures the patients report experiencing,” Ridley-Pryor said. “Not only have the seizures decreased in frequency, they have also been shorter in duration. Our families are quite happy about this and so are we.”

Stephanie and Danny Pearson’s 15-year-old daughter, Sydnie, is one of Le Bonheur’s first epilepsy patients to receive CBD.

Sydnie had her first seizure when she was 4 months old. Since then, Sydnie would suffer from more than six grand mal seizures a day and required 24-hour care. When Le Bonheur doctors suggested the Pearsons try the hospital’s new CBD drug trial, the Fort Smith, Ark., residents immediately signed up. Prior to CBD treatment, epilepsy medications did little to slow down Sydnie’s seizures. At 16 months, a vagus nerve stimulator was implanted on her brain, which helped reduced the number of seizures but did not stop them completely.

“It’s devastating to watch your child suffer from seizures, and there’s nothing you can do about it,” Stephanie Pearson said. “When they asked if we wanted to participate in the new trial, we were thrilled.”

After Sydnie’s first dose of CBD, 12 hours passed before she had her next seizure – the longest period that she had ever been seizure free. Stephanie said her daughter’s health continues to improve with the new medication and her seizure frequency and length have reduced dramatically.

Zachary Scruggs, 17, also saw improvement when he was enrolled in the drug trial. Scruggs had his first seizure when he was 7 years old, and over the past decade, they grew in frequency and severity. The seizures caused him to fall behind in school and affected his memory. Multiple anti-seizure medications and a partial temporal lobectomy helped, but his seizures always returned.

When Zachary began taking CBD, Scruggs only had one seizure in 11 days. The Columbia, Tenn., resident didn’t progress to the second phase of the trial, however, after developing an allergic reaction.

Children enrolled in the drug trial are required to return to Le Bonheur for multiple follow-up visits where researchers will record seizure activity data, as well as any side effects or concerns from parents.

Ridley-Pryor said the children will most likely continue to take CBD in addition to other anti-seizure medications. While epilepsy medications have proven to help some children, the drug’s side effects often can make a child sluggish, Ridley-Pryor said. The side effects of CBD are less severe and are easier to tolerate compared to most epilepsy medications.

“Cannabidiol seems to have a milder side effect profile,” Ridley-Pryor said. “With other medications, if you want to calm the seizures, you have to calm the brain, and this may unintentionally lead to decreased energy, sleepiness or behavior changes. While taking CBD with other epilepsy medications, our kids seem to be more interactive, a positive outcome we like to see.”

In the past 20 years, the use of medical marijuana to help with pain management, neurological disorders and other medical conditions has gained popularity. As of July, 25 states and Washington D.C. permit the use of medical marijuana. In August, the Drug Enforcement Agency said it will allow researchers and drug companies to grow research-grade marijuana.

With Le Bonheur leading the way to finding more effective treatments for epileptic children, the Pearsons remain hopeful that CBD will one day help their child to a better quality of life.

“The entire family feels overwhelmingly blessed because there’s finally hope that she’s going to make it to her 18^thbirthday and beyond,” Stephanie Pearson said.