This is the story of little Charlotte and her discovery of CBD oil for epilepsy.
Charlotte an epilepsy sufferer who was treated with CBD oil and later named a cannabis plant, was one of the most shocking cases of CBD oil for epilepsy. Here is the full story.
Like most Matt and Paige Figi they were living the American dream. They met at Colorado State University, where they became boyfriends and later married, the couple bought a home and planned to travel the world. They traveled, but their plans changed when their first child was born in 2004. Max was 2 years old when they decided to have another child. The couple were shocked at their lives when an ultrasound revealed not one, but two babies. Charlotte and Chase were born on October 18, 2006.
“They were born at 40 weeks … Charlotte weighed 7 pounds, 12 ounces,” said Paige. “They were healthy, everything was normal.”
Seizures and hospital stays begin
The twins were 3 months old when the Figis’ lives changed forever. Charlotte had just taken a bath, and Matt was putting her diaper on.
“She was lying on her back on the floor and her eyes began to blink, the seizure lasted about 30 minutes and we took her to the hospital,” says Matt.
“We don’t call it epilepsy,” said Paige. “We just thought it was a random seizure, they did a million dollar job, the MRI, the lumbar puncture, they did all the work and found nothing, and they sent us home.”
A week later, Charlotte had another seizure. This was longer, and it was only the beginning. During the following months, Charlotte – lovingly named Charlie – had frequent seizures lasting from two to four hours, and she was hospitalized multiple times. The doctors were stunned. Her blood tests were normal. Her scans were normal.
The seizures continued.
The hospital stays were lengthened. One of the doctors treating Charlotte thought there were three possible diagnoses. The worst case scenario? Dravet syndrome, also known as childhood myoclonic epilepsy or SMEI.
Dravet syndrome is a rare and severe form of intractable epilepsy. Intractable means that seizures are not controlled by medication. The first seizures with Dravet syndrome usually begin before the first year of age. In the second year, other seizures occur: involuntary myoclonia or muscle spasms and an epileptic state, seizures that last more than 30 minutes or come one after the other.
At the time, the Figis said, Charlotte was still developing normally, talking and walking the same day as her twin. But the crises continued to worsen. The medications he was taking were very strong, seven drugs some of them heavy, addictive like barbiturates and benzodiazepines. They worked for a while, but the seizures always came back with more force.
“At 2 years old, he really started to decline cognitively,” said Paige. “Whether it was the medications or the seizures, it was happening, it was obvious, it was very wrong.” When Charlotte was 2½ years old, the Figis decided to take her to Children’s Hospital Colorado. A neurologist analyzed her to see if she had the SCN1A gene mutation, which is common in 80% of Dravet syndrome cases. After two months, the test returned positive.
“I remember this day being a relief,” said Paige. “Even though it was the worst case scenario, I was relieved just to know it.”
Matt decided to leave the army. “Every mission, every training I was going to do, I couldn’t be called from home because I was back in the pediatric ICU or in the hospital again.” They were quickly running out of options. They considered a drug from France. Doctors suggested an experimental anti-seizure drug that is used in dogs.
Paige took her daughter to Chicago to see a Dravet specialist, who put the girl on a ketogenic diet often used to treat epilepsy that is high in fat and low in carbohydrates. The special diet forces the body to produce additional ketones, natural chemicals that suppress seizures. It is mainly recommended for epileptic patients who do not respond to treatment.
The diet helped control Charlotte’s seizures, but had many side effects. He suffered from weight loss. His immune system collapsed. And new behavior problems arose.
“At one point she was out eating pine and things like that, all kinds of different things,” said Matt. “As a parent you have to say, let’s take a step back and look at this. Is this treatment really beneficial?” Two years after the diet, the seizures returned.
The end of the rope
In November 2000, Colorado voters passed Amendment 20, which required the state to establish a medical marijuana registration program. There are eight medical conditions for which patients can use cannabis: cancer, glaucoma, HIV / AIDS, muscle spasms, seizures, severe pain, nausea, and severe cachexia or dramatic weight loss and muscle atrophy. The average patient in the program is 42 years old, there are 39 patients under the age of 18. Paige had consistently voted against the use of marijuana. That was before Dravet syndrome entered their lives. Now a military contractor who spends six months a year abroad, Matt used his free time searching the Internet for something that could help his girl.
He found a video of a California boy whose Dravet was being successfully treated with cannabis. The strain was low in tetrahydrocannabinol, or THC, the psychoactive marijuana compound. It was also high in cannabidiol, or CBD, which has medicinal properties, but no psychoactivity. Scientists think that CBD calms the excessive electrical and chemical activity in the brain that causes seizures. It had worked on this boy, his parents saw a significant reduction in seizures in him.
By then Charlotte had lost the ability to walk, speak, and eat. I was having 300 big bad crises a week. Her heart had stopped several times. When it happened at home, Paige performed cardiopulmonary resuscitation until an ambulance arrived. When it happened in the hospital, where they had already signed an order not to resuscitate her, they said goodbye to the little girl. Doctors had even suggested putting Charlotte in a medically induced coma to give her battered little body a break.
He was 5 years old when the Figis knew there was nothing more the hospital could do. It was then that Paige decided to try medical marijuana. But finding two doctors to sign on a medical marijuana card for Charlotte was no easy feat. She was the youngest patient in the state to apply.
Scientists do not fully understand the long-term effects that early marijuana use can have on children. Studies showing negative effects, such as decreased lung function or increased risk of a heart attack, are mainly done in adult marijuana smokers. But Charlotte would not be smoking.
“Everyone said no, no, no, no, no, and I kept calling and calling,” said Paige. Eventually he reached out to Dr. Margaret Gedde, who agreed to reunite with the family.
“(Charlotte) has been close to death so many times, she has had so much brain damage from seizure activity and probably pharmaceutical medication,” said Gedde. “When you put the potential risks of cannabis in a context like that, it’s a very easy decision”
The second doctor to sign was Alan Shackelford, a Harvard doctor who had several medical marijuana patients at his disposal. He was unfamiliar with Dravet and due to Charlotte’s age he had serious reservations.
“But they had exhausted all of their treatment options,” Shackelford said. “There really were no steps they could take beyond what they had done. Everything had been tried, except cannabis.”
Paige found a Denver dispensary that had a small amount of a type of marijuana called R4, which is said to be low in THC and high in CBD. She paid around $ 800 for 2 ounces – all that was available and had a friend who was extracting the CBD oil. They had him examine the oil in a lab and started with a small dose.
“We pioneered the whole thing, we were coppering Charlotte,” said Paige. “This is a federally illegal substance. I was terrified of being honest with you.”
But the results were impressive. “When he didn’t have those three, four attacks that first hour, that was the first sign,” Paige recalled. “And I thought well, ‘Let’s go another time, this has to be a fluke.’ “The seizures stopped for an additional hour. And for the next seven days. Paige said she couldn’t believe it. Neither could Matt. But her CBD oil was running out.
Paige soon heard about the Stanley brothers, one of the state’s largest marijuana producers and dispensary owners. These six brothers were crossing a strain of marijuana also high in CBD and low in THC, but they did not know what to do with it. No one wanted it, they couldn’t sell it.
However, they even had reservations when they found out Charlotte’s age. But once they met her, they were on board. “The biggest mistake about treating a child like little Charlotte is that most people think he is using drugs,” said Josh Stanley, emphasizing his plant’s low THC levels. Charlotte is the most precious girl in the world, I will do anything for her.
The brothers started the Realm of Caring Foundation, a non-profit organization that provides cannabis to adults and children suffering from a number of diseases, including epilepsy, cancer, multiple sclerosis, and Parkinson’s, who cannot afford this treatment. People have called them Robin Hoods for marijuana. Josh Stanley said it is his call. They use the money they get from medical marijuana patients and get donations from sponsors who believe in their cause. They only ask patients, like the Figis, to donate what they can.
CBD oil in Charlotte
Charlotte receives a dose of CBD oil twice a day in her meal. Her doctor Gedde found three to four milligrams of CBD oil per pound of body weight as the girl stopped the seizures. Today, 6-year-old Charlotte is thriving. Her attacks only occur two or three times a month, almost exclusively while sleeping. Not only are you walking, but you can ride your bike. His weight increased and he is talking a little more every day.
“I literally see Charlotte’s brain making connections that haven’t been made in years,” said Matt. “My thought now is, why were we the ones who had to go out and find this natural cure, how come a doctor didn’t know about this? Why didn’t they let me know about this?”
The Charlotte marijuana strain was named after the Stanley brothers and is now used by many patients to alleviate the painful symptoms of diseases such as epilepsy and cancer.
It’s called Charlotte’s Web.
“I didn’t hear her laugh for six months,” said Paige. “I didn’t hear her voice at all, just her crying. I can’t imagine I would be watching her doing these things that she does now (without medical marijuana). Every day is a blessing.”
Matt added: “I want to scream from the rooftops, I want other people, other parents, to know that this is a viable option, CBD oil for epilepsy, it works !!!!”.