By most standards Matt and Paige Figi were living the American
dream. They met at Colorado State University, where they shared a love
of the outdoors.... After getting married, the couple bought a house and
planned to travel the world. They did travel, but their plans changed
when their first child was born in 2004. Max was 2 when they decided
to have another child. The couple got the surprise of their lives when
an ultrasound revealed not one but two babies. Charlotte and Chase
were born October 18, 2006. "They were born at 40 weeks. ... Charlotte
weighed 7 pounds, 12 ounces," Paige said. "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 had a bath, and Matt was putting on her diaper. "She
was laying on her back on the floor," he said, "and her eyes just
started flickering." The seizure lasted about 30 minutes. Her parents
rushed her to the hospital. They weren't calling it epilepsy," Paige
said. "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."
A week later, Charlotte had another seizure. This one was longer,
and it was only the beginning. Over the next few months, Charlotte --
affectionately called Charlie -- had frequent seizures lasting two to
four hours, and she was hospitalized repeatedly. Doctors were stumped.
Her blood tests were normal. Her scans were all normal. "They said
it's probably going to go away," Paige recalled. "It is unusual in
that it's so severe, but it's probably something she'll grow out of."
But she didn't grow out of it. The seizures continued. The hospital
stays got longer. One of the doctors treating Charlotte thought there
were three possible diagnoses.
The worse-case scenario? 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. The
first seizures with Dravet Syndrome usually start before the age of 1.
In the second year, other seizures take hold: myoclonus, or
involuntary, muscle spasms and status epilepticus, seizures that last
more than 30 minutes or come in clusters, one after the other.
At that time, the Figis said, Charlotte was still developing
normally, talking and walking the same day as her twin. But the
seizures continued to get worse. The medications were also taking a
toll. She was on seven drugs -- some of them heavy-duty, addictive
ones such as barbiturates and benzodiazepines. They'd work for a
while, but the seizures always came back with a vengeance. "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 Figis 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.
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. 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.
Everything had been tried -- except cannabis.
Dr. Alan Shackelford
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.
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.
Charlotte's Web
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, 6, is thriving. Her seizures are down to just one a
day, 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."
By Saundra Young
CNN Health
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