Katelyn Baker
Well-Known Member
Less than a week after their 7-year-old daughter Adrienne started taking an experimental marijuana-based medicine, Bill and Kim Kelly noticed a big difference.
Once on Epidiolex, Adrienne's seizures decreased in both intensity and frequency, from as many as 20 a day to just a few. She could be engaged and focused, as she was one evening this week, putting puzzles together on the living room floor. And she was speaking again, after years of minimal verbal communication.
Bill said it was the return of the daughter they began losing four years before, when Adrienne had a 10-minute seizure that was the start to frequent episodes brought on by her rare condition, double cortex syndrome. Kim likened Adrienne's response to Epidiolex to the 1990 movie "Awakenings," in which treatment with a new drug arouses a patient from a catatonic state.
The Kellys do not get Adrienne's medicine through one of the dispensaries that have opened since January as part of the state's new medical marijuana program. She gets the vaguely fruit-scented liquid through an experimental study at NYU Langone Medical Center in New York City. The active ingredient in Epidiolex is the marijuana derivative cannabidiol, or CBD; the drug contains no tetrahydrocannabinol, or THC, know for its mind-altering effects.
Adrienne isn't the only one to see success with the experimental drug. Preliminary results with CBD treatment on children with epileptic seizures have been positive, said Dr. Orrin Devinsky, director of the Comprehensive Epilepsy Center at NYU Langone. Children who got a 12-week treatment in an earlier study saw a 36.5 percent drop in seizures.
The Kellys say they are extremely lucky. Kim is a public health educator for the state, Bill an attorney for the city. They know how to advocate for Adrienne, and their efforts to get the best care for he put them at the right place at the right time to enroll her in the NYU study.
Their experience has led them to believe even more strongly that families like theirs need easier access to medical marijuana. Though the state program makes the medicine legal for New Yorkers with qualifying conditions, including children with epilepsy, patient advocates say it is still hard to get because there are too few doctors in the program, too few manufacturers and no insurance coverage.
"The feds have got to get it off of the schedule, and that will open up a lot of doors," Bill said, referring to marijuana's listing, along with drugs like heroin and LSD, as a Schedule I controlled substance, with no accepted medical use and a high potential for abuse.
The federal designation of marijuana as an illegal drug factored into New York officials' decision to keep its program relatively narrow. It also makes even research challenging, experts say.
Adrienne was born with double cortex syndrome, which is so rare her parents couldn't find a support group to join. She didn't hit typical developmental milestones as an infant and toddler. An MRI when she was 18 months old showed two brain abnormalities. Significant seizures started when she was 3.
There is no cure; doctors can only treat symptoms. Adrienne gets at least a half-dozen different types of seizures, including the convulsive variety often associated with epilepsy, and others tougher to see, causing her head to drop suddenly or her body to stiffen.
Before the NYU study, she was on four different medications to control the seizures. She also gets occupational therapy, physical therapy, speech therapy, swim therapy, music therapy - anything the Kellys think might help. She's had two surgeries to implant vagus nerve stimulators in the last three years. Sometimes called "pacemakers for the brain," they are placed under the skin on the chest, with a wire running to the vagus nerve in the neck.
Still, until she started on Epidiolex, the Kellys expected multiple seizures each day and frequent hospital trips.
The Kellys first brought Adrienne to NYU in the fall of 2014. In a continual search for potential remedies, they wanted to try the anticonvulsant felbamate, with which Albany doctors had little experience. Side effects of felbamate can be fatal.
Because Adrienne was already a patient at the medical center, she got into the Epidiolex study in March. They were stunned by Adrienne's quick response to the Epidiolex. The drug's positive effects have allowed the Kellys to cut back on Adrienne's other medications.
More importantly, they see the reversal of a four-year decline. The drug isn't a miracle that has catapulted her to the developmental level of other children her age. But Bill and Kim say they see things they didn't know she was capable of.
"She has more in her head than she can express, and it has become obvious on these good days," Kim said last week.
The NYU Epidiolex study continues to next spring, but is closed to new participants. The medication will remain available to Adrienne and others enrolled until either it is approved or the company stops the trial due to a lack of promising results, Devinsky said.
The neurologist suggested other parents of epileptic children consider all-CBD concentrations of medical marijuana - but only if they have tried and failed at drugs that have gone through the FDA's rigorous approval process.
"It's worth considering for either children or adults whose epilepsy has not responded to standard medication," Devinsky said. "But I would not start with a cannabis product."
News Moderator: Katelyn Baker 420 MAGAZINE ®
Full Article: Albany Child's Epilepsy Improves On Medical Marijuana
Author: Claire Hughes
Contact: (518) 454-5694
Photo Credit: Michael P. Farrell
Website: Times Union
Once on Epidiolex, Adrienne's seizures decreased in both intensity and frequency, from as many as 20 a day to just a few. She could be engaged and focused, as she was one evening this week, putting puzzles together on the living room floor. And she was speaking again, after years of minimal verbal communication.
Bill said it was the return of the daughter they began losing four years before, when Adrienne had a 10-minute seizure that was the start to frequent episodes brought on by her rare condition, double cortex syndrome. Kim likened Adrienne's response to Epidiolex to the 1990 movie "Awakenings," in which treatment with a new drug arouses a patient from a catatonic state.
The Kellys do not get Adrienne's medicine through one of the dispensaries that have opened since January as part of the state's new medical marijuana program. She gets the vaguely fruit-scented liquid through an experimental study at NYU Langone Medical Center in New York City. The active ingredient in Epidiolex is the marijuana derivative cannabidiol, or CBD; the drug contains no tetrahydrocannabinol, or THC, know for its mind-altering effects.
Adrienne isn't the only one to see success with the experimental drug. Preliminary results with CBD treatment on children with epileptic seizures have been positive, said Dr. Orrin Devinsky, director of the Comprehensive Epilepsy Center at NYU Langone. Children who got a 12-week treatment in an earlier study saw a 36.5 percent drop in seizures.
The Kellys say they are extremely lucky. Kim is a public health educator for the state, Bill an attorney for the city. They know how to advocate for Adrienne, and their efforts to get the best care for he put them at the right place at the right time to enroll her in the NYU study.
Their experience has led them to believe even more strongly that families like theirs need easier access to medical marijuana. Though the state program makes the medicine legal for New Yorkers with qualifying conditions, including children with epilepsy, patient advocates say it is still hard to get because there are too few doctors in the program, too few manufacturers and no insurance coverage.
"The feds have got to get it off of the schedule, and that will open up a lot of doors," Bill said, referring to marijuana's listing, along with drugs like heroin and LSD, as a Schedule I controlled substance, with no accepted medical use and a high potential for abuse.
The federal designation of marijuana as an illegal drug factored into New York officials' decision to keep its program relatively narrow. It also makes even research challenging, experts say.
Adrienne was born with double cortex syndrome, which is so rare her parents couldn't find a support group to join. She didn't hit typical developmental milestones as an infant and toddler. An MRI when she was 18 months old showed two brain abnormalities. Significant seizures started when she was 3.
There is no cure; doctors can only treat symptoms. Adrienne gets at least a half-dozen different types of seizures, including the convulsive variety often associated with epilepsy, and others tougher to see, causing her head to drop suddenly or her body to stiffen.
Before the NYU study, she was on four different medications to control the seizures. She also gets occupational therapy, physical therapy, speech therapy, swim therapy, music therapy - anything the Kellys think might help. She's had two surgeries to implant vagus nerve stimulators in the last three years. Sometimes called "pacemakers for the brain," they are placed under the skin on the chest, with a wire running to the vagus nerve in the neck.
Still, until she started on Epidiolex, the Kellys expected multiple seizures each day and frequent hospital trips.
The Kellys first brought Adrienne to NYU in the fall of 2014. In a continual search for potential remedies, they wanted to try the anticonvulsant felbamate, with which Albany doctors had little experience. Side effects of felbamate can be fatal.
Because Adrienne was already a patient at the medical center, she got into the Epidiolex study in March. They were stunned by Adrienne's quick response to the Epidiolex. The drug's positive effects have allowed the Kellys to cut back on Adrienne's other medications.
More importantly, they see the reversal of a four-year decline. The drug isn't a miracle that has catapulted her to the developmental level of other children her age. But Bill and Kim say they see things they didn't know she was capable of.
"She has more in her head than she can express, and it has become obvious on these good days," Kim said last week.
The NYU Epidiolex study continues to next spring, but is closed to new participants. The medication will remain available to Adrienne and others enrolled until either it is approved or the company stops the trial due to a lack of promising results, Devinsky said.
The neurologist suggested other parents of epileptic children consider all-CBD concentrations of medical marijuana - but only if they have tried and failed at drugs that have gone through the FDA's rigorous approval process.
"It's worth considering for either children or adults whose epilepsy has not responded to standard medication," Devinsky said. "But I would not start with a cannabis product."
News Moderator: Katelyn Baker 420 MAGAZINE ®
Full Article: Albany Child's Epilepsy Improves On Medical Marijuana
Author: Claire Hughes
Contact: (518) 454-5694
Photo Credit: Michael P. Farrell
Website: Times Union