Written by Madoline Markham
Photography by Beau Gustafson
Carly Chandler’s life looked very different two days after first taking daily doses of cannabiodiol (CBD) oil last April. The then-4-year-old went from having 200 to 300 seizures a day to having three to four. Her dad, Dustin, can’t recall the last time she had a severe one, and sometimes she can go a few days in between them. “It’s been pretty amazing how it’s worked,” Dustin says.
Carly is one of 51 participants in a UAB study testing the safety and tolerability of the oil for patients with treatment-resistant seizures, many of the them with epilepsy. Every morning and evening she takes the oil, known as Epidiolex, orally in syringe, separated from her other medications because taking it together is bad for her liver, the study has found.
Early study results show that around 50 percent of subjects saw “sustained improvement in seizure control” over a six-month period. Seizures declined between 32 and 45 percent among this group, depending on the CBD dose. Two patients were completely seizure-free, and nine dropped out due to lack of efficacy or side effects. Preliminary findings also show that the oil is safe for intake.
Although CBD oil is a derivative of the cannabis plant, it contains only traces of THC, the psychoactive component of marijuana, but it wasn’t until the study was authorized by the Alabama Legislature in April 2014 by legislation known as Carly’s Law (named for Carly Chandler of course) that it could begin.
Before the oil, Carly’s seizures lasted up to 7 minutes. It was common for her body to convulse and her face to turn blue as she screamed for minute after minute. Something as minor as a remote control dropping on the floor could trigger them. Back then, she had up to 30 seizures per hour. “When it gets crazy like that, you’ll do anything for your kid. That’s the point where we were in 2014, and we said, ‘Something’s got to be done,’” Dustin recalls. It was then that he first approached Governor Robert Bentley about legalizing medical use of the oil in Alabama. In the months that followed, he would go from office to office in the state legislature and show them videos of Carly’s convulsing with seizures that are a “miserable experience (to see) as a dad.”
The first state senator Dustin approached about CBD oil in 2014 chuckled at his suggestion of passing legislation in favor of using part of the marijuana plant with a super majority Republican legislature. Today, he says, the message is out, and people think differently about the oil.
“In Alabama I think it helped open the eyes of the people [to see] things can come from that plant that help people, and I think Carly’s Law did a lot of eye opening to get people to say, ‘Hey we do need to help people know that conventional medicine isn’t helping,’” Dustin says. “Carly and kids like her changed that perception.”
Even before he knew the oil worked for Carly, Dustin talked to a parent in a lab one day whose child with epilepsy and autism went from having three to four seizures an hour to one to two a day after taking the oil, completely changing their everyday life. That was the moment he said he knew all of his efforts were worth it. “When you hear stories like that, there’s no doubt the stuff works,” he says.
The Chandlers have always believed that doctors should be involved in treatment of the oil, and now they have seen their importance firsthand. After she began taking the oil, Carly’s liver enzymes raised one time, but working with the doctors, they found that they went down if she took her other medications at another time. With their help they also learned that the rash Carly had developed on her forehead was not related to the oil. Because Carly is in the study, doctors check her blood regularly and call if they see something abnormal, and her parents have a phone number they can use if need be.
Dr. Jerzy P. Szaflarski, UAB Epilepsy Center director, and Dr. Martina Bebin, Professor of Neurology and Pediatrics, are closely monitoring seizure frequency, side effects, and potential medication interactions for each patient in the study, including Carly. They have also submitted the first publication describing interactions between CBD and other seizure medications to the journal Epilepsia.
“The data collected via programs like ours are in agreement with the data from clinical trials and indicate a potential role of CBD in the treatment of epilepsy,” Szaflarski says. “When approved, CBD will be likely an attractive option for patients with epilepsy.”
At least initially, the oil would be an add-on therapy, he says, but it’s not a “cure” as some people think about it. “The response to CBD oil is in a similar range to other anti-seizure medications and the oil has side effects and interactions,” he says. “Thus, providers will need to learn how to use this treatment in a similar way to other treatments that are being introduced to the market.”
Since starting to take CBD oil, Carly’s parents have also seen her cognitive ability improve dramatically. Now when she is sitting by a window, they can tell her to look at a tree, and she does.
“I have told people a lot of times that was one of the first times I ever felt like I connected with my daughter with my eyes, and that’s a godly experience for a dad,” Dustin says. “I literally felt like she was looking at me. Up until then, she had never done that.”
Now a kindergarten student at Rocky Ridge Elementary, Carly, now 5, has taken steps on a treadmill and with a walker thanks to work with physical therapists. Because she has CDKL5, a rare neurological disorder that has no cure and no treatment, she is not verbal and does not walk, but the steps she has taken are far from insignificant.
“What would be small for one parent who hadn’t been through this is huge for parents like us,” Dustin says of her progress. “I am a big believer that since her brain was not seizing so much, she has been able to achieve more goals. Her brain is not seizing all the time, and if your brain gets a rest, it has to be able to form new connections to be able to learn these skills.”
Carly’s improvement has also reoriented her family’s life for the better. “You go from sitting on pins and needles and worrying about when the next seizure is coming and how severe it’s going to be, to now we’re a lot more relaxed,” Dustin says. “It could come back tomorrow and be a lot worse…It’s always in the back of your mind, but now when she does have one, we almost miss them (because) they are so short in duration.”
Today, as Carly continues to take the oil, Dustin’s hopes also lie in something bigger, that the oil can possibly help treat other people who can’t find treatment for their medical issues.
“That was the prayer, that maybe this was just the beginning to allow more people to get help,” he says. “It was never about my daughter. Of course I wanted my daughter to get help, but if it didn’t help her, if it could help one other child or adult, it made it all worth it.”
To learn more about Carly’s journey, follow her dad Dustin’s blog.