Families with sick kids moving to Colorado for medical marijuana
After medications failed to quiet 2-year-old Grace Burriesci's
seizures, her family packed up and moved from New York to Colorado,
hoping that a special strain of medical marijuana grown there could help
Diagnosed with Dravet Syndrome when she was a
year old, the little girl had been suffering as many as 400 seizures a
day. Her family feared that if the seizures couldn't be brought under
control, they'd lose Grace.
"The FDA-approved pharmaceuticals
weren't working for her and unfortunately, kids that have her condition
are actually passing away from it, so it's a matter of life and death,"
Grace's dad, Biagio Burriesci, told TODAY.
After researching her
condition, the Burriesci family learned about a strain of marijuana
called Charlotte's Web that has been helping other kids with intractable
This particular type of marijuana has been selectively
bred to have low levels of a cannabinoid called THC, which is the
plant's psychoactive ingredient, and higher levels of cannabidiol, or
While both cannabinoids impact pain, nausea and seizures,
CBD isn't psychoactive, experts say. So that means that kids taking this
form don't get high.
Cannabinoids work by hijacking normal brain
circuitry. In other words, they are very similar to substances our own
brains naturally make called endocannabinoids, which serve to quiet
excessive activity, whether it's in the immune system, the gut or the
When cells become overactive, a switch in the
brain is thrown and endocannabinoids are released, calming things down.
The hope is that marijuana will tune up that system.
case, marijuana hasn't completely banished seizures, but it's cut them
back from 400 per day, to about 20, her parents said.
like that are what have brought nearly 200 families to Colorado seeking
an option that has little scientific research to back it up, but plenty
of anecdotal stories.
Not long ago, another family moved down the
street from Grace and her parents. Just like the Burriescis, the
Botkers were hoping to help a child with uncontrollable seizures. Their
7-year-old daughter Greta had tried medications and even surgery to
quiet the storms in her brain, but to no avail.
That all changed
when she started taking Charlotte's Web. Her parents say Greta's
seizures have dropped from 15 per day to three.
Though it means
that her parents must split their time between their home in Colorado
and their farm in Minnesota, they say it's worth it.
"There's nothing we wouldn't do to try to help her, and that's why we're here in Colorado," Mark Botker, Greta's dad, said.
success stories like these are promising, the American Epilepsy Society
cautions parents that there isn't solid evidence that marijuana works —
or is even safe for kids.
"The recent anecdotal reports of
positive effects of the marijuana derivative cannabidiol for some
individuals with treatment-resistant epilepsy give reason for hope," the
American Epilepsy Society said in a statement. "However, we must
remember that these are only anecdotal reports, and robust scientific
evidence for the use of marijuana is lacking. The lack of information
does not mean that marijuana is ineffective for epilepsy. It merely
means that we do not know if marijuana is a safe and effective treatment
for epilepsy." You can read the full AES position on medical marijuana here.
lack of research may only be temporary. In October of last year the FDA
approved two investigational trials of cannabidiol for the treatment of
pediatric epilepsy, one at the New York University school of Medicine,
the other at the University of California San Francisco.
of research may only be temporary. In October of last year the FDA
approved two trials of cannabidiol for the treatment of pediatric
epilepsy, one at the New York University school of Medicine, the other
at the University of California San Francisco.
neurology group at the David Geffen School of Medicine at UCLA is
awaiting OK from the FDA and the university to begin a trial. "At the
moment we're anticipating 25 patients per group at each center," said
Dr. Raman Sankar, a professor and chief of the division of pediatric
neurology. "Our conservative hope is that this will begin sometime this
year, and maybe within the next few months."
Sankar's group will
be using a formulation developed by GW Pharmaceuticals, a British
company, that has gotten regulatory approval in Europe for another
cannabinoid formulation, named Sativex, for the treatment of spasticity
caused by multiple sclerosis.
Once scientists realized that
Dravet Syndrome was caused by a genetic mutation, it put the illness in a
different light. It also suggested that this might be a kind of
epilepsy that could be helped by therapeutics like cannabidiol.
issue that has held up research for many years is the difficulty for
researchers to get supplies of marijuana because it is listed as a
Schedule I drug by the DEA, along with heroin and LSD, Sankar said.
"You can't very easily do even a mouse study with it," he said.