Unable to find anything to control her daughter’s intractable epilepsy, Jill Swing was weeks away from one last drastic attempt to stem the hundreds of seizures Mary Louise suffers each day.
Swing said Thursday she and her daughter were going to move to Colorado by March, leaving her husband and Mary Louise’s twin brother behind in Mount Pleasant. In Colorado, Mary Louise could receive cannabidiol oil, a nonpsychoactive chemical extracted from marijuana that could reduce the number of seizures she has.
Those plans were put on hold two weeks ago after state Sen. Tom Davis received a call from Harriett Hilton, a Beaufort resident and Mary Louise’s grandmother, who sought a solution that wouldn’t require the move across the country.
On Wednesday, the Beaufort Republican introduced a bill that would create a therapeutic research program for cannabidiol oil within the S.C. Department of Health and Environmental Control, opening the door for the Medical University of South Carolina to administer the drug to patients like Mary Louise.
Mary Louise’s seizures cannot be controlled by treatment or medication.
The 6-year-old suffers between 20 and 60 seizures an hour despite being on two medications, Swing said. Without medication, those numbers can jump to 200 seizures an hour.
She suffers from two types of seizures. One is characterized by rapid eye fluttering. The other, more serious type causes muscle tone — the continuous contraction of the muscles that support posture and balance — to lapse, causing her to fall.
Mary Louise’s seizures aren’t life-threatening, but they limit her ability to function independently. She cannot walk or sit by herself. She needs help to stand up. She must be strapped into a feeding chair to eat. She constantly risks falling from her chair or hitting her head on her food tray from the “drop seizures” that cause her to fall.
Swing said Mary Louise first had the seizures when she was 8 months old. Two neurologists diagnosed her with intractable epilepsy when she was 22 months old. The doctors used a battery of tests that included a six-hour video-electroencephalograph session, a monitoring technique commonly used to diagnose the disorder.
Since her diagnosis, the Swings have tried nine different medications and a high-fat, low-carbohydrate diet to curb the seizures, and have sought the help of specialists along the East Coast.
None of those options has made a significant impact the way CBD oil would, Swing said.
“Specialists at New York University, Johns Hopkins and MUSC said CBD oil was the first thing they had come across that works,” she said. “A doctor in Colorado prescribing it to her patients said that eight out of 11 patients had a seizure reduction between 98 and 100 percent.”
The doctor, Margaret Gedde, and one of her patients, Charlotte Figi, were featured in a CNN documentary in August about marijuana. Figi, 7, suffered from as many as 300 violent seizures a week until a strain of high-CBD marijuana created by two Colorado brothers — and now named “Charlotte’s Web” — limited her seizures to just two or three a month.
Since the documentary’s airing, many parents have moved to Colorado, where marijuana is legal, to obtain the CBD oil.
The cannabidiol oil, which is extracted from marijuana plants and administered orally with a syringe dropper, does not contain tetrahydrocannabinol, or THC, the primary psychoactive part of the cannabis plant.
Davis said Wednesday it made “zero sense” to prohibit doctors from prescribing the oil, which has no street value and no psychoactive properties.
Davis began researching CBD oil three weeks ago, after Hilton told him her granddaughter’s story. He consulted the Swings and Mary Louise’s doctors at MUSC to learn more and began to work with the legal staff of the state legislature’s Senate Medical Affairs Committee to find the best way to give Mary Louise and others relief.
From the committee staff, Davis learned about the Controlled Substances Therapeutic Research Act of 1980. The law gave DHEC the ability to start clinical studies involving medical therapeutic uses of marijuana, but it was never funded and the programs never started, Davis said.
“The fact that the controlled-substances bill hasn’t been funded underscores the need to educate state legislators and to overcome what I consider to be an unreasonable prejudice against a natural drug with absolutely zero psychoactive properties that can provide relief to children and others who are now suffering horribly,” Davis said. “Ignoring this issue, I think, would be immoral.”
DHEC spokesman Jim Beasley said Thursday he did not know why the program had not been funded.
Davis’ reworking of the law would create a research program within DHEC for CBD oil — and potentially other forms of medical cannabis — to be used as anti-seizure medication. MUSC would become a site for CBD oil clinical studies through the program, allowing patients like Mary Louise who qualify to receive the oil.
FDA-approved studies would qualify for some federal funding, but the programs would also require funding from DHEC and MUSC. Some cost would also be passed on to the families and their health insurance, Davis said.
Davis said similar programs are in use at the NYU School of Medicine and at the University of California at San Francisco, using a drug named Epidiolex that is manufactured by GW Pharmaceuticals. Davis said the GW drug is the only one advanced enough for clinical studies, although the bill could be broadened as it moves through hearings and experts testify.
Swing said legislators need to become educated, citing a recent conversation with an aide to Gov. Nikki Haley. It ended, she said, when the aide told her it would be difficult to get support for “getting children high.”
Davis said the bill’s passage is still far away. A subcommittee hearing for expert testimony and testimony from families affected by the disorder will occur in the next few weeks. Davis said he hopes something can be signed into law by Haley before the end of the 2014 legislative session.
Swing said she’s willing to wait on the legislative process, because of the finality a move to Colorado would bring.
“Sen. Davis is very optimistic about the bill, so we’re going to wait it out,” she said. “The response to it has been very positive so far. The move to Colorado is major, because she wouldn’t be able to leave the state with the medication.
“That means no trips to Disney World, no trips to visit Grandma and Grandpa. We’re going to wait it out, but if there are significant delays, we’ll have to move and give her an opportunity to thrive.”