Parent Report Studies
But the authors of those studies said the results were, in the words of one, “too good to be true” and in direct conflict with their own experiences in seeing patients taking cannabidiol-based products.
— Thus far, only parent reports and open-label trials for support.
Chapman was senior investigator on one of the parental-report studies, targeting parents of children using oral medical cannabinoids in Colorado. It was actually a medical chart review of 75 children treated at his center and not a survey per se. But all information about clinical responses came from parental reports, making the results indistinguishable from survey data.
Mean age was 11, and patients were taking a mean of 2.7 other anti-epileptic drugs (AEDs).
Our nine-year-old daughter has Absence Seizures. We have tried all the major types of drugs prescribed by her neurologist. She has experienced every single negative & bad side effect with these poisonous medicines. We've taken her off all meds, she is still having atypical seizures. Now, we are considering the cannabis plant. Does anyone have any feedback for us in connection with Absence Seizures and CBD's &/or THCA meds?
It had taken four months of phone calls, emails, and meetings with doctors and pharmaceutical company executives on two continents to get permission to try this drug. Sam wasn’t joining an ongoing clinical trial. The company made the pills just for him. It believed CBD was safe based on animal studies. It also said it knew of about 100 adults who had tried pure CBD like this over the past 35 years. As a percentage of body weight, Sam’s dose would approach twice what anyone else on record had tried for epilepsy. Would it make him vomit or become dizzy, or give him a rash or cause some other unpleasant event? We didn’t know. We’d volunteered our son to be a lab rat.
Evelyn was terrified. They’d come 5,350 miles to get these pills, medicine we hoped might finally quiet Sam’s unremitting seizures. He was to take a 50-milligram pill once a day for two days, increasing the dose to maybe three pills twice a day. Evelyn was to keep a log of his symptoms during their two-week stay. They would need to revisit the hospital two more times before they returned to San Francisco on January 3, 2013. That meant two more rounds of brain scans, blood tests, and doctors’ appointments.
Sam would be the first kid, and arguably the first person in more than 20 years, to try pharmaceutical-grade CBD as a treatment for epilepsy.
This is Sam. He’s my son. His epilepsy caused him to have up to 100 seizures a day. After seven years we were out of options. Our last hope: an untested, unproven treatment. The only problem? It was illegal.
Sam wanted the story of his treatment to be told. “People need to know what this looks like,” he says. Elinor Carucci