When Bonni Goldstein, MD, medical director of Canna-Centers, a group of medical marijuana practices in California, prescribes cannabidiol — a compound extracted from marijuana — to children with epilepsy, she always clarifies to their parents that the long-term risks of the compound are unknown. “It wasn’t available 30 years ago,” she explains. Yet, “every single parent has said to me, ‘Well, I don’t know the long-term effects of the medications my child is taking, and the seizures haven’t stopped. I’d like to give my child the best chance possible.’”
“To many of these people, it’s just another medication to try,” says Goldstein.
A number of her pediatric patients are non-responders — that is, they’re among the roughly one-third of people with epilepsy for whom conventional medications don’t work. The meds may reduce the frequency or severity of seizures, but fail to eliminate them entirely; some children don’t respond to the drugs, period. “What’s driving people is the option of another medication, even if it’s not been thoroughly researched,” she says. With epilepsy, “it’s very difficult, especially when a child is involved, to live a normal life. Seizures are unpredictable. Imagine being in Target with your child, and your child drops to the floor. Imagine getting a call from school that your child is seizing.”
For Ray Mirzabegian, director of the nonprofit Realm of Caring California, the decision to seek out CBD was an obvious one. Just a couple years ago, his 10-year-old daughter, Emily, was taking four different anti-seizure medications. “Unfortunately, that causes a vegetative state,” he tells Yahoo Health. She’d tried a total of 13 medications, and none effectively controlled her epilepsy: At her worst, she was having 120 seizures a day, at best, 40 to 45 a month. “At that point, [doctors] start retrying some of the medications that failed,” hoping to create a cocktail of several drugs that would work, says Mirzabegian. “We decided that’s not the route to go.”
A couple of years ago, Emily Mirzabegian was taking multiple medications in an attempt to decrease seizures from epilepsy. (Photo courtesy of Ray Mirzabegian)
As with Mirzabegian, it’s often desperation — not rebellion against convention — that pushes parents to seek medical marijuana for their children. It’s hope that drives them to scour the Internet, searching for any shred of information that may provide relief, even though public opinion is largely against them. Goldstein has seen families move across the country to California just to seek CBD for their children, since marijuana is still a Schedule 1 drug — that is, “with no currently accepted medical use and a high potential for abuse” — under federal law. (Medical marijuana has been legal in California since 1996.)
Without fail, they accept the cannabidiol, or CBD. In fact, many have come to Goldstein specifically for the drug, knowing already, through Internet forums, that the marijuana extract could equal hope for their sick child.