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?
