Marijuana has been in the news again recently, after doctors have begun trying a special type of medical marijuana on children with seizures bought on by a rare form of severe epilepsy called Dravet Syndrome. CNN chief medical correspondent Dr. Sanjay Gupta spent a year traveling around the world to shed light on the debate. His groundbreaking documentary “WEED” aired August 11 on CNN.
Charlotte Figi, aged 6 was featured in the story, and the good news is she is now thriving and her seizures have been reduced to one a day—from 300 grand mal seizures a week—since she has been on medical marijuana low in THC. Tetrahydrocannabinol, or THC,is the compound in marijuana that’s psychoactive. The strain was also high in cannabidiol, or CBD, which has medicinal properties but no psychoactivity. Scientists think the CBD quiets the excessive electrical and chemical activity in the brain that causes seizures.
Charlotte is a twin and both her and her twin brother Chase were perfectly normal at birth. Charlotte had her first seizure at 3 months old which lasted for 30 minutes. Initially the doctors thought it was a random seizure as all the tests, MRI, EEG and spinal tap revealed nothing. A week later Charlotte had another seizure which lasted longer. Again doctors found nothing her blood tests and scans were normal, but they were considering Dravet Syndrome, also known as myoclonic epilepsy of infancy or SMEI. Dravet Syndrome is a rare, severe form of intractable epilepsy. Intractable means the seizures are not controlled by medication. Eventually, this is what Charlotte was diagnosed with when she was two and a half years old. At this stage she was declining cognitively and her parents felt she was slipping away.
By the time Charlotte was given the medical marijuana all other options had been exhausted—a ketogenic diet was tried, the high fat low carbohydrate diet did help but Charlotte suffered a lot of side effects including bone loss and her immune system was compromised. After two years on the diet her seizures returned. At this point Charlotte had lost the ability to walk, talk and eat and heart had stopped a number of times. At the hospital, where her parents had already signed a do-not-resuscitate order, doctors had even suggested putting Charlotte in a medically induced coma to give her small, battered body a rest.
She was 5 when they learned that there was nothing more the hospital could do …the only thing that hadn’t been tried was cannabis.
There are eight medical conditions for which patients can use cannabis — cancer, glaucoma, HIV/AIDS, muscle spasms, seizures, severe pain, severe nausea and cachexia or dramatic weight loss and muscle atrophy.
Finding two doctors to sign off on a medical marijuana card for Charlotte was no easy feat. Scientists don’t fully understand the long-term effects early marijuana use may have on children and are reluctant to take the risk. In Charlotte’s case, she was facing death. Weighing the potential risks that cannabis might have compared to the potential brain damage the seizures may have already caused, seemed a low risk.
The effects were amazing. Charlotte stopped having seizures. The problem was to get a continuing supply of the type a marijuana that Charlotte needed and that her parents could afford. The Stanley brothers came to the rescue. They were the largest marijuana growers in the state of Colorado and dispensary owners. These six brothers were crossbreeding a strain of marijuana also high in CBD and low in THC, but they didn’t know what to do with it. No one wanted it; they couldn’t sell
They started the Realm of Caring Foundation, a nonprofit organization that provides cannabis to adults and children suffering from a host of diseases, including epilepsy, cancer, multiple sclerosis and Parkinson’s, who cannot afford this treatment. They only ask patients to donate what they can.
The marijuana strain Charlotte and now 41 other patients use to ease painful symptoms of diseases such as epilepsy and cancer has been named after the little girl who is getting her life back one day at a time. It’s called Charlotte’s Web.
Whatever your position is on legalizing marijuana, you cannot possibly deny those like Charlotte—innocent children who will die needlessly and painfully–and those with chronic diseases who could control pain and live their lives with dignity.
To see this whole story check out: