ALABAMA - Three-year-old Carly Chandler, the girl who inspired Alabama's first medicinal marijuana law, sits in a specially made rocking chair in front of her family's Christmas tree when her tiny body suddenly jerks. It's one of the hundred small seizures she has each day. The severe grand mal seizures, the ones her parents worry will kill her, mostly happen at night, with a recent one sending her into gasping convulsions for 10 minutes. In Carly's teal and white bedroom, her father, Dustin Chandler, said all he could do was bow his head. “I literally prayed over her bed that she would make it through the seizure,” he said.
Families who pushed for Alabama's first medicinal marijuana law hope their children can start trying the potential seizure treatment sometime in early 2015 and hope that it can provide relief where heavy regimens of pharmaceuticals have not. “Carly's Law” funded a University of Alabama at Birmingham to study the marijuana derivative cannabidiol, or CBD oil, to treat severe seizures. Gov. Robert Bentley signed the legislation into law nine months ago, but the university had to await federal approval to begin the study.
Carly started having seizures at just 8 weeks old. She was diagnosed 10 days after her first birthday with CDKL5, a rare genetic disorder that causes severe neurodevelopmental impairment and is characterized by frequent seizures. “We worry every day that she could die from what is called SUDEP, sudden unexplained death in epilepsy,” said her mother, Amy Chandler. “The brain literally stops and shuts everything down.” Carly can't speak or walk. She rocks her head side to side when she wants a turn rocking in the infant swing. Like most 3-year-olds, she likes the taste of grilled chicken nuggets, although hers are pureed and spoon fed to her. She laughs when she gets tickles from Daddy and enjoys Christmas lights and music.
The Chandlers hope that if Carly's brain can just get a rest from the daily onslaught of seizures that maybe she could make some developmental gains, perhaps say a few words.
“Her voice would be priceless. Just to hear her talk to us,” Amy Chandler said. The Chandlers' fight for the oil came after a CNN special that featured a Colorado girl who saw a reduction in her severe seizures, and regained her ability to talk, after taking CBD oil. “We thought, 'Why can they have it and we can't? Because they live in a different ZIP code?' ” Amy Chandler said.
The oil is an extract from marijuana, but comes from a plant variety with very little tetrahydrocannabinol, or THC, the component that gets a person high. Instead, it is rich in the compound cannabidiol. The scientific evidence about the oil is limited. However, the ancedotal accounts from parents were enough to bring scores of parents to Colorado, where marijuana is legal for both medicine and recreation, and sparked legislative pushes by parents in statehouses from Georgia to Utah to make CBD oil available.
Dustin Chandler, a Realtor and Pelham police officer, went to Montgomery to lobby for the legislation. The original version of the bill would have given people with seizure disorders a justifiable defense if charged with drug possession over the oil. It quickly ran into stumbling blocks because of concerns about patient safety and political fears of approving a medicinal marijuana bill in an election year. “You know this and I know this, it provided the Republicans some political cover,” Dustin Chandler said of using a university study. However, he said the involvement of university doctors means that dosage and potency are controlled. Both are major pluses for patient safety, he said, in addition to looking for scientific evidence about the oil's effectiveness. “I just wish it was a broader bill. I think we can push for that once we get this started and start letting doctors determine whether this is a valid treatment for these disorders,” Dustin Chandler said.
The Food and Drug Administration sent UAB letters this month greenlighting the two studies, one for children and one for adults. UAB spokesman Bob Shepard said the FDA requested some changes in the protocol and those will go before a review board next month. Unlike studies in which some patients are given placebos, the UAB study will provide the oil to all participants. More than 400 people at one point had expressed interest, he said.
One of them is Amy Young of Wetumpka. She hopes the oil can help her 3-year-old daughter Eleanor, nicknamed “Leni,” who can have a dozen major seizures a day, even on heavy doses of anti-seizure medication. “We have been on everything. We have tried everything,” Young said. “I hope and pray, first, that we get into the study and next that she gets some relief,” Young said.
Leni had a stroke before she was born that destroyed all but about 10 percent of her brain. Still, she was progressing normally as an infant — laughing, rolling over and reaching — until the seizures started happening when she was about 7 months old. Doctors didn't think she would live and advised hospice. But the family brought Leni home instead, preparing to say good-bye, but hoping for a miracle.
Today, Leni, like most 3-year-olds, sings along to Frozen's “Let it Go” but in “her own language.” She likes looking at a neighbor's Christmas light display, synchronized to the sounds of the same Disney film. But Young describes a two steps forward, two steps back existence. Leni will regain a basic baby skill, like rolling over, only to have it wiped out when she has a severe round of seizures.
Parents say they realize the oil might not be a miracle cure; it is hope, where hope hasn't existed before. “We know it's not a cure for her seizures. We don't even know if it will help her seizures. All we can do is pray that it is going to work for her,” Amy Chandler said. Her doctors have said that Carly will “write her own story” but Amy Chandler also worries that the seizures, if uncontrolled, could wipe out the abilities she does have.
Carly takes physical therapy several times a week to try to build her strength. On this day, she howls in protest as her physical therapist Daphne Wallace adjusts a walker that holds Carly upright. Protests aside, Carly slowly moves one pink sneakered foot forward and then the other. “She's stepping more,” Wallace says. “Good girl, Carly. I know. I know,” Wallace coos encouragingly.
The walker inches slowly down the hallway.
By Chris Chandler - AP/Dec. 26, 2014
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Girl Who's the Inspiration for Carly's Law Still Waiting for Her Own Medical Justice