News of a successful trial of a marijuana-based seizure drug is giving hope to a Concord family battling their 5-year-old daughter’s chronic seizure disorder.
Paige Frate was diagnosed with Dravet syndrome when she was 6 months old. It’s a rare, catastrophic form of intractable seizures. Paige has difficulty regulating her body temperature and after a stroke three years ago she became nonverbal.
Paige’s mom, Kristina Frate, showed newsnet5.com the cocktail of drugs her daughter currently takes.
She said they still have not found a medication that can reliably stop the seizures, which can happen nearly 100 times a day. Some last seconds while others persist for hours at a time.
Paige hasn’t gone a day without a seizure since she was 6 months old.
The family has been interested in marijuana-based medications for years after learning of the positive effects on some epileptic children.
But because medicinal marijuana is illegal in Ohio, Frate has been unable to test whether the drug would help her daughter.
“It’s just very unfortunate that my zip code dictates whether or not I can give my daughter this medicine,” Frate told newsnet5.com.
But news this week of a successful major clinical trial of a marijuana-based seizure medication was a step in the right direction, Frate said.
GW Pharmaceuticals said the drug Epidiolex reduced convulsive seizures in patients with Dravet syndrome by close to 40 percent.
Now the British biopharmaceutical company is looking into approval from the Federal Drug Administration.
“It definitely gives us hope and I’m very excited for this opportunity as I believe all kids with Dravet’s syndrome should have access to this medicine,” Frate said about the results.
But she said the liquid drug contains cannabidiol, which is only part of the cannabis plant, and FDA approval could be years in the future.
Frate said her family will continue to support the Ohioans or Medical Marijuana Ballot Initiative, which would include use of the entire marijuana plant.
The ballot initiative was rejected by the Ohio Attorney General’s Office last week, but the group resubmitted the petition on Tuesday, addressing the concerns expressed by Attorney General Mike DeWine.
Whether it be by FDA approval, a ballot initiative or legislative action, Frate said her family can’t wait much longer for medical marijuana to come to Ohio.
“I don’t know when the next seizure’s going to be that could cause brain damage, further brain damage for that matter, or essentially taking her life,” Frate told newsnet5.com.
