"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.
The end of the rope
In November 2000, Colorado voters approved Amendment 20, which required the state to set up a medical marijuana registry program.
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 Figis 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.
"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.