Drugs made from a marijuana compound offer new hope to kids with severe epilepsy
A study published this week in the New England Journal of Medicine showed that drugs made from a marijuana compound can reduce seizures in kids who have severe epilepsy.
When Desmond Phillips had his first epileptic seizure, he was just 8 months old. His parents, Roelie and Karim Phillips, say that up until then he was a happy healthy boy.
"He's not able to breathe, it stopped for a moment and then it started again," Roelie says.
After that the seizures never really stopped. Sometimes 20 in a week. In 2011, at its worst, more than 2,700.
"It really affects the quality of life," Roelie says,
"There's really no quality of life under those circumstances," Karim says. "We didn't have a lot of hope when he was having those many seizures."
Roelie says that at age two his seizures got so bad, he actually started regressing. "He's funny, he's happy, but he doesn't always get it," Roelie says.
One after another, anti-seizure medications failed.
In 2014, doctors at NYU Langone Medical Center put Desmond on cannabidiol, or CBD, one of the compounds in the marijuana plant. CBD does not induce a high.
The study of 120 children with a rare form of epilepsy found those who were given CBD along with their standard medications had a nearly 40 percent reduction in the frequency of seizures.
"We didn't know about the placebo," says Dr. Orrin Devinsky, who directs the comprehensive epilepsy center at NYU Langone and led the trial. "After so much time, literally 4,000 years of anecdote and belief, we now have scientific rigor."
Desmond is going days now without a seizure, sometimes weeks.
"Our son is actually starting to emerge," Karim says.
"I just had the best Mother's Day ever," Roelie says. "He did the carousel and just having fun with the kids outside on a gorgeous day without having to worry about Des having a seizure."
"He was smiling, he was laughing, he was enjoying life," Karim says. "He's like the best hugger -- he gives you these big hugs."
Though the family says Desmond has no problems with the medication, side effects like fatigue and gastrointestinal symptoms were more common with CBD than placebo. The study was funded by the pharmaceutical company that makes the medication. It plans to file for FDA approval this year.