“This is something that needs to happen across the country so that every child who might need this would have access," said Julie Michaels, Sydney's mother and a member of Campaign for Compassion, which is pushing for comprehensive medical marijuana laws in Pennsylvania. "Why should the state lines be the factor as to whether my child can get help or not?”
Sydney is one of only a few hundred children around the country enrolled in a clinical trial to test the use of marijuana-based treatments for epilepsy. But Hannah is not.
“I’m watching my daughter die every day,” said Heather Shuker, Hannah’s mother. “Hannah has so many seizures, and every seizure could take her from me. I firmly believe that medical cannabis will help her.”
“There’s so much that I want for her right now that she just can’t do,” Michaels said about Sydney. “Just being able to go out and experience life, to be able to go out and play in the yard without fear of seizures starting.”
Since 2014, 17 states have legalized the use of marijuana-derived cannabidiol (CBD) in children: Utah, Wyoming, Wisconsin, Iowa, Missouri, Oklahoma, Texas, Louisiana, Mississippi, Alabama, Tennessee, Georgia, Florida, South Carolina, North Carolina, Kentucky and Virginia. The laws are intended mostly to treat intractable epilepsy and, in some cases, other conditions. Florida, Georgia and Louisiana, for example, allow limited medical marijuana use for cancer treatment.
CBD is the non-psychoactive component of the marijuana plant. It has yet to be proven scientifically as a successful treatment, though anecdotal evidence suggests it helps some children. Tetrahydrocannabinol (THC) is the part of the plant that produces a high, but it is also known – if not proven – to treat pain, nausea and insomnia, among other symptoms.
PLAY The Salemme family of Spring Grove, Pennsylvania, are advocating for access to medical marijuana for their son Jackson (right), 7, who has a rare form of epilepsy. (Photo by Lex Talamo | News 21)
The 17 states that recently passed CBD legislation all placed limits on the THC concentration of medical marijuana extracts to minimize the psychoactive effects of the medication. They range from 0.3 percent in Oklahoma to 5 percent in Georgia.
Shuker said her daughter Hannah, diagnosed with severe intractable epilepsy and Lennox-Gastaut syndrome, has about 250 seizures a month. They have tried more than 18 different seizure medications and special diets.
Pharmaceuticals made her daughter’s seizures worse, Shuker said. Hannah now has a surgical feeding tube because she can no longer swallow on her own. Doctors have told Shuker that Hannah’s only remaining option to try to reduce the seizures is a brain surgery procedure with risks of infection, increased seizures or stroke.
Meanwhile, visits to the emergency room and pediatric ward have become routine, Shuker and Michaels say their lives revolve around doctor appointments and unexpected stays in the hospital. While other mothers track their children’s height on walls with markers, these mothers track dates and times and numbers of seizures on homemade charts.
Sydney is one of 25 children in the clinical trial at Children’s Hospital of Philadelphia who are receiving doses of Epidiolex, a purified CBD created by London-based GW Pharmaceuticals. Part of the drug’s attraction is that it is low in THC.
PLAY Julie Michaels and her daughter, Sydney, 5, prepare to go home after spending a couple of days at the Children's Hospital of Pittsburgh. (Photo by Calah Kelley | News 21)
“Prior to this study, she couldn’t do a puzzle. After about two weeks, she was whipping through puzzles on an iPad and we’re like, ‘Who is this kid?’” Michaels said. “We’re talking about a kid who was seizing easily from 1,000 to 3,000 times in a week. It was incredible.”
Dr. Eric Marsh, assistant professor of neurology and pediatrics at the Children’s Hospital of Philadelphia and attending physician for the Philadelphia clinical trial, was cautiously optimistic about the overall results, with parents reporting a 50 to 60 percent reduction in their children’s seizures. However, Marsh encourages families to wait until marijuana-derived medications earn Food and Drug Administration (FDA) approval.
“There’s so much interest and excitement over this that it really could skew results,” Marsh said. “It does seem that CBD interacts with some of the other medications. Clearly it’s not a miracle drug. It has interactions with other drugs, and it does have side effects.”
For many parents, the 2013 airing of the CNN documentary "Weed" was the watershed moment that ignited a movement to make cannabis oil available to children. The report featured Charlotte Figi, a then-five-year-old girl from Colorado Springs, Colorado, who used cannabis oil to treat the 300 grand mal seizures she suffered each week.
The oil she uses, Charlotte’s Web, is named after her and produced by Colorado-based Stanley Brothers Social Enterprises.
"We tried this on her, and it stopped her seizures,” said Paige Figi, Charlotte’s mother. “Now, three and a half years later, she has two seizures a month – down from 1,200.”
PLAY Paige Figi, executive director of Coalition for Access Now, is the mother of Charlotte Figi, a Colorado girl who used cannabis oil to treat her seizures and was featured on CNN’s “Weed” documentary. (Photo by Nick Swyter | News 21)
“They’ve responded very well, obviously it's not a silver bullet for everyone,” said Jesse Stanley, who grows and produces the oils with his brothers. Their nonprofit, the Realm of Caring, offers oils to patients at reduced prices.
Many other parents, inspired by Charlotte Figi’s story and frustrated with unsupportive politicians, have since moved from their home states to Colorado, where marijuana treatments are legal. According to the Colorado Department of Public Health and Environment, there are 434 children on the state’s medical marijuana registry. In August 2013, there were 60.