Colby Patterson’s seizures started when he was playing Candy Land.
His big sister moved her piece, his mom moved hers and then it was 8-year-old Colby’s turn. But he froze.
Within a moment, he was right back in it and moved his piece past Candy Cane Forest.
Soon, he froze again, just for a second. And then again, for a little longer. He stared at the board.
“Colby. Colby, it’s your turn.”
Those pauses 13 years ago in their Liberty home were the first sign of Colby’s persistent seizures.
But now a new drug, Epidiolex, recently approved by the Food and Drug Administration, gives him hope the seizures can get under control, or even stop.
The strawberry-flavored syrup is an oral solution, derived from marijuana, though it doesn’t contain any part of the plant that causes a high. (Tetrahydrocannabinol, or THC, does.)
Instead, Epidiolex comes from cannabidiol, or CBD. It was approved June 25 and is expected to be available this fall to help people with epilepsy, particularly those with Lennox-Gastaut and Dravet syndromes. Experts say it could also help those with drug-resistant epilepsy.
Colby suffers so-called absence seizures, brief staring spells that cause gaps in awareness. Most children grow out of them. His got worse
At age 15, Colby started having tonic-clonic seizures — convulsions.
The seizures would strike sometimes every seven to 10 days and usually 20 or 30 minutes after he woke up in the morning. Maybe he was brushing his teeth. Or getting dressed for school.
He would be unconscious for hours and then bounce up, finish getting ready and go to what was left of the school day.
“He’s never been the kid that wants to lay around,” said his mother, Bridgit Patterson. “He just gets right back in the ballgame and he doesn’t let it stop him.”
After Colby’s seizures started, Patterson signed up for the online Institute of Health Sciences, based in Maryland, so she could better understand what doctors would tell her about Colby.
Colby went on to play recreational baseball throughout high school and managed the high school football team. He earned a crop production certificate from North Central Missouri College in Trenton and loves to water ski.
Now, at 21, he hasn’t had a tonic-clonic seizure in over two years but still suffers absence seizures.
And Patterson is now the program director for the Epilepsy Foundation of Missouri & Kansas. She travels to schools to teach educators about epilepsy and what they can do to work with students.
About 35 percent of epilepsy patients find no benefit from seizure medication, said Dr. Ahmed Abdelmoity, director of the child neurology division at Children’s Mercy hospital.
Colby is one of those. But Patterson said they have hope Epidiolex will make a difference. In a similar case, one boy went with his mother to London, where CBD medication is legal. He sometimes had more than 100 absence seizures in a day. CBD brought those under control.
About a third of the patients involved in the Epidiolex study saw improvement by 50 percent or more, Abdelmoity said. Their quality of life improves, they sleep better, their risk of death caused by epilepsy decreases.
It’s not for everyone. And Christine Gordon of Lenexa knows it.
Her 6-year-old daughter, Autumn, has Dravet syndrome, a rare form of epilepsy caused by a genetic mutation. She started having seizures at 3 months old. Gordon has been her full-time caretaker ever since. She and her husband haven’t been on a date night in years.
Autumn is considered nonverbal, though she recently received a Tobii Dynavox device to help her communicate. It looks like an iPad and she can point to how she feels.
Because of that device, Gordon learned that Autumn prefers blue potato chip bags over orange ones. Now, Gordon knows Autumn’s favorite colors are blue and red; she doesn’t like purple.
They’re not even going to try Epidiolex because they’ve already tried multiple brands of CBD. It’s available over-the-counter as a supplement, though until recently Kansas state law prohibited it because of a broad definition of marijuana that the Legislature amended this year.
As herbal supplements those products aren’t federally regulated like Epidiolex, and the FDA has sent warning letters to dozens of companies over the last few years selling products that contained less CBD than advertised, or even none at all.
Such non-pharmaceutical CBD products didn’t make a difference for Autumn.
So the family is moving to Colorado. Gordon, with approval from Autumn’s care team, wants to get Autumn access to “full spectrum” cannabis therapy.
“There is a very small percentage that (Epidiolex) helps,” Gordon said. “For that very small percentage, I think it’s great that they’re going to be able to get insurance coverage. This journey can be very expensive. For a majority of patients, no, I don’t see it being effective because we’ve had access to CBD for so many years.
“It’s not going to help my daughter; it doesn’t change the fact that we’re leaving.”
Children’s Mercy hadn’t used marijuana products previously due to the lack of research, Abdelmoity said.
“In the presence of the studies under a regulated product Epidiolex, our position will change,” he said. “We cared more about the possible harm that could happen to children by giving them something that’s not regulated.”
And like all medications, Epidiolex comes with side effects — liver problems, sleepiness or suicidal thoughts (like many other anti-epileptic drugs), according to the FDA.
As soon as Epidiolex becomes available, Colby and his mom plan to jump on board.
“If it won’t help Colby,” Patterson said, “it’ll help somebody.”