Charlottes WEB

Charlotte Figi, the first child to be cured 100% from her Epilepsy one year ago in September had her family move to Colorado because Charlotte was a much more severe case then my own. Charlotte was born a twin with Chase on October 18th, 2006. Her parents Matt and Paige had met in Colorado State University and after their marriage they bought a house and had planned to become world travelers. Well that all had changed in 2004 when their first child, Max, was born and were excited two years later when finding out that they were having twins.

Now Epilepsy is a very strange phenomenon in that like Charlotte and myself can be born 99% healthy and grown up looking as well as feeling totally fine except for the number one thing you would like to be fine, but isn’t. So Paige had said “Charlotte weighed 7 pounds, 12 ounces” and “They were healthy. Everything was normal.” For the first three months that is. At that time her brother was changing her diaper and said that “She was lying on her back on the floor and her eyes just started flickering”.  That seizure lasted 30 minutes as her parents rushed her to the hospital. Just as they told my own parents that they were not calling it Epilepsy but just a seizure but after that episode in 1990 my mother informed me that they did just as they did to Charlotte just as Paige said “"They weren't calling it Epilepsy, We just thought it was one random seizure. They did a million-dollar work-up -- the MRI, EEG, spinal tap -- they did the whole work-up and found nothing. And sent us home." When I was sent home though it had not affected me and was kept quite from me all that time until it finally did and my team of neurologist calling it “a sleeper”.

This is when the story gets crazy. A week later charlotte had another, longer seizure lasting two to four hours! Being repeatedly hospitalized. Just as I said, her blood tests and scans were normal. This I myself heard a million times I hate it because although it is true for some but not for most. Paige recalled too “They said it’s probably going to go away” and the kicker “It is unusual in that it’s so severe, but it probably something she’ll grow out of”.

Something had not happened but continued, worse, longer, as well as her hospital stays and treating her with three possible diagnoses that most of us untreatable epileptics are on if not more to stay alive. But Charlotte being still an infant which happens to some at that time but a rare case as well is worst with Dravet Syndrome or (SMEI), the myoclonic Epilepsy of infancy when the Epilepsy is intractable. Many infants pass away from but Charlotte did not. The Dravet Syndrome starts before the age of one and as the years progress as I know myself other seizures start to take hold such as myoclonus, or involuntary, muscle spasms and status epilepticus, seizures that last more than 30 minutes or come in clusters, one after the other.

Charlotte, the Figis said was still developing normally as her twin talking and walking the same day but the seizures continued to get worse, and for a two year old the medications, seven of them, where taking a toll on her. They said that they would work for a while but then come back with a vengeance! Teens and adults have this same problem, neurologists call it the honeymoon affect. When a new medication may work for a week or less and then gets right back to its evil business worse than before.

"At 2, she really started to decline cognitively," Paige said. "Whether it was the medicines or the seizures, it was happening, it was obvious. And she was slipping away." When Charlotte was 2½, the Figi’s decided to take her to Children's Hospital Colorado. A neurologist tested her for the SCN1A gene mutation, which is common in 80% of Dravet Syndrome cases. After two months, the test came back positive. "I remember to this day it was a relief," Paige said. "Even though it was the worst-case scenario, I felt relief just to know."

Matt, a Green Beret, decided to leave the military.

"Every mission, every training I was going to do I was called home because she was in the pediatric ICU again 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 being used on dogs.

Paige took her daughter to Chicago to see a Dravet specialist, who put the child on a ketogenic diet frequently used to treat Epilepsy that's high in fat and low in carbohydrates. The special diet forces the body to make extra ketones, natural chemicals that suppress seizures. It's mainly recommended for epileptic patients who don't respond to treatment. The diet helped control Charlotte's seizures but had a lot of side effects. She suffered from bone loss. Her immune system plummeted. And new behavioral problems started popping up.

"At one point she was outside eating pine cones and stuff, all kinds of different things," Matt said. "As a parent you have to say, let's take a step back and look at this. Is this truly beneficial treatment because of these other things?" Two years into the diet, the seizures came back.

In November 2000, Colorado voters approved Amendment 20, which required the state to set up a medical marijuana registry program.

Pot activists divided over new cannabis club

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. The average patient in the program is 42 years old. There are 39 patients under the age of 18.

Paige had consistently voted against marijuana use. That was before Dravet Syndrome entered their lives. Matt, now a military contractor spending six months a year overseas, used his spare time scouring the Internet looking for anything that would help his little girl.

He found a video online of a California boy whose Dravet was being successfully treated with cannabis. The strain was low in tetrahydrocannabinol, or THC, the compound in marijuana that's psychoactive. It 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. It had worked in this boy; his parents saw a major reduction in the boy's seizures.

By then Charlotte had lost the ability to walk, talk and eat. She was having 300 grand mal seizures a week.

Her heart had stopped a number of times. When it happened at home, Paige did cardiopulmonary resuscitation until an ambulance arrived. When it happened in the hospital, where they'd already signed a do-not-resuscitate order, they said their goodbyes. Doctors had even suggested putting Charlotte in a medically induced coma to give her small, battered body a rest.

She was 5 when the Figi’s learned there was nothing more the hospital could do. That's when Paige decided to try medical marijuana. But finding two doctors to sign off on a medical marijuana card for Charlotte was no easy feat. She was the youngest patient in the state ever to apply.

Scientists don't fully understand the long-term effects early marijuana use may have on children. Studies that show negative effects, such as diminished lung function or increased risk of a heart attack, are primarily done on adult marijuana smokers. But Charlotte wouldn't be smoking the stuff.

Childhood is also a delicate time in brain development. Preliminary research shows that early onset marijuana smokers are slower at tasks, have lower IQs later in life, have a higher risk of stroke and increased incidence of psychotic disorders, leaving some scientists concerned.

Is medical marijuana safe for children?

"Everyone said no, no, no, no, no, and I kept calling and calling," Paige said.

She finally reached Dr. Margaret Gedde, who agree to meet with the family.

"(Charlotte's) been close to death so many times, she's had so much brain damage from seizure activity and likely the pharmaceutical medication," Gedde said. "When you put the potential risks of the cannabis in context like that, it's a very easy decision."

The second doctor to sign on was Alan Shackelford, a Harvard-trained physician who had a number of medical marijuana patients in his care. He wasn't familiar with Dravet and because of Charlotte's age had serious reservations.

"(But) they had exhausted all of her treatment options," Shackelford said. "There really weren't any 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, said to be low in THC and high in CBD. She paid about $800 for 2 ounces -- all that was available -- and had a friend extract the oil.

She had the oil tested at a lab and started Charlotte out on a small dose.

"We were pioneering the whole thing; we were guinea pigging Charlotte," Paige said. "This is a federally illegal substance. I was terrified to be honest with you."

But the results were stunning.

"When she didn't have those three, four seizures that first hour, that was the first sign," Paige recalled. "And I thought well, 'Let's go another hour, this has got to be a fluke.' "

The seizures stopped for another hour. And for the following seven days.

Paige said she couldn't believe it. Neither could Matt. But their supply was running out.

Paige soon heard about the Stanley brothers, one of the state's largest marijuana growers 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 it.

Still, even they had reservations when they heard about Charlotte's age. But once they met her, they were on board.

"The biggest misconception about treating a child like little Charlotte is most people think that we're getting her high, most people think she's getting stoned," Josh Stanley said, stressing his plant's low THC levels. "Charlotte is the most precious little girl in the world to me. I will do anything for her."

The brothers 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.

People have called them the Robin Hoods of marijuana. Josh Stanley said it's their calling. They use the money they make from medical marijuana patients and get donations from sponsors who believe in their cause. They only ask patients such as the Figis to donate what they can.

"We give (cannabis) away for next to free," Stanley said. "The state won't allow us to actually give it away, so we give it away for pennies really."

Charlotte gets a dose of the cannabis oil twice a day in her food.

Gedde found three to four milligrams of oil per pound of the girl's body weight stopped the seizures.

Today, Charlotte, 9, is thriving. Her seizures only happen two to three times per month, almost solely in her sleep. Not only is she walking, she can ride her bicycle. She feeds herself and is talking more and more each day.

"I literally see Charlotte's brain making connections that haven't been made in years," Matt said. "My thought now is, why were we the ones that had to go out and find this cure? This natural cure? How come a doctor didn't know about this? How come they didn't make me aware of this?"

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.

"I didn't hear her laugh for six months," Paige said. "I didn't hear her voice at all, just her crying. I can't imagine that I would be watching her making these gains that she's making, doing the things that she's doing (without the medical marijuana). I don't take it for granted. Every day is a blessing."

Matt added, "I want to scream it from the rooftops. I want other people, other parents, to know that this is a viable option."

Colorado by The Epilepsy Foundation of Colorado by the Stanley brothers at their Colorado Springs dispensary. Five brothers opened up a non-profit business called Realm of Caring. For years prior parents have been turning to medical marijuana to treat their children’s Epilepsy as a treatment for their child’s seizure activity and reducing it quite well. At the University of Colorado Anschutz Medical Campus is believed to be the first study of its kind. This study known as Charlotte’s Web will determine the specific genetic components to explain to Epilepsy patients why from injecting this solution may see positive results while some may not.

The plant seen in these pictures from the Realm of Caring organization is a low in THC compound which produces the marijuana’s psychoactive effects but high in CBD, the compound believed to reduce seizure activity in certain forms of Epilepsy. The children that this is available for in certain states is given in a liquid form, oil to be exact. Low in THC, the compound that produces marijuana’s psychoactive effects, and high in CBD, a compound believed to reduce seizures in those suffering from certain forms of Epilepsy. It is administered to Epilepsy patients, including many children, in the form of an oil. The plant is named after Charlotte Figi, a seven year old girl who was the first epileptic patient successfully treated with the strain. It is said by the Colorado University School of Medicine and chief of the Comprehensive Epilepsy Programs at Denver Health that really gets my blood boiling is that while anecdotal evidence suggests Charlotte’s Web can be highly effective in treating such conditions, scientific investigation of the product has been stymied by federal drug laws that severely limit marijuana research. Something that I’ve heard myself face to face with a researcher you may have read about already in my personal blog page of Possibly The Greatest Day of My Life. In Colorado the University is recruiting patients, children who have been on the Charlotte’s Web already to conduct further research as well as collected data. It’s possible to conduct the study in Colorado because Charlotte’s Web is grown there legally and is home to many families who have moved to the state to specifically to access the marijuana strain for a purpose to do better in a child’s life. This study will be performed February 2016. My family would have done the same for me if it was possible at the time.  

Charlotte’s Web is not a total 100% win medication, but I strongly would recommend this to any child suffering from a seizure disorder, more than any FDA approved medication that exists. I myself have been on almost all of them but until this is ready for testing on me it may change the way us epileptics live for the better. I always said to my family, wife and friends that there has to be something out there, something that we are missing to look into and when this is ready for testing I’ll be there waiting.

Learn and watch more about Charlottee Figi here