Pubdate: Sun, 26 Oct 2014
Source: Sun-Sentinel (Fort Lauderdale, FL)
Page: 2B
Copyright: 2014 Sun-Sentinel Company
Contact: http://drugsense.org/url/mVLAxQfA
Website: http://www.sun-sentinel.com/
Details: http://www.mapinc.org/media/159
Author: Audra D.S. Burch, Miami Herald

PARENTS FIGHT FOR MEDICAL POT FOR SICK KIDS

Stay or go: That's the choice Florida families with sick children
may face as voters decide whether to allow expanded use of medical
marijuana. Even with approval, no one is sure how quickly the strains
would be available to the public.

Nicolas Peruyero was 8 years old, blind and unable to walk or talk
when his mother saw a documentary about the benefits of medical
marijuana and its promise to reduce seizures.

For a few moments, Nancy Peruyero imagined what Nicolas' life might
be like without the relentless myoclonic seizures every day. And for
the first time, she allowed herself to hope, an emotion she had rarely
felt since that August afternoon in 2009 when her youngest son was
diagnosed with Batten disease, an unusual neurological disorder marked
by seizures, loss of motor skills and mental impairment. His life
expectancy with the disease is no more than 12 years. He turned 9 on
Oct. 2.

"We want to try medical marijuana in hopes that it will calm his
seizures and help him become more alert and sleep better,"  said
Peruyero, 41, who first watched the CNN documentary "Weed"  about a
year ago. "We want to be able to have all our options. For us, this
is a quality-of-life issue. What parent would not do everything they
could to help their child?"

Politics aside, for families with medically needy children,
Florida's march into the world of medical marijuana - fraught with
differing opinions by legislators, medical professionals and patients,
and little scientific evidence - is personal, built upon the
anecdotal evidence of cannabis' healing properties. It's not a
miracle drug, they say, but rather a compassionate alternative treatment.

These families are faced with balancing the hope that expanded medical
marijuana will become available if Florida voters pass a
constitutional amendment on Nov. 4 and the daunting reality that even
with that approval, the marketplace could be a long time coming.

For Peruyero, doing "everything"  for her son means access to the
so-called Charlotte's Web non-euphoric strain of the drug, approved
for medical use by the Legislature last spring for children with
cancer, intractable seizures and other serious conditions. Everything
also means the approval of Amendment 2, which would allow other
strains of medical cannabis to be used. Without the range of strains
that Charlotte's Web and Amendment 2 would jointly provide, some
families are even considering leaving Florida for other states such as
Colorado and California, where medicinal pot is allowed.

"We know this is experimental in the sense that we don't know if
Charlotte's Web will help us. But we will try,"  Peruyero said.
"What we want is the ability to be able to try the other types, too."

The possibilities of medical marijuana have made advocates of these
parents, some gathering signatures to put the measure on the ballot.
Some are part of Facebook-powered circles where the posts and
discussion are all about the latest research, the drug's therapeutic
benefits and personal stories of children already being treated with
various strains in other states - as chronicled in the documentary
"Weed."

Dr. Sanjay Gupta's CNN special, which first aired in August 2013,
featured Charlotte Figi, a little girl in Colorado who was having 300
seizures a week. She began using medical marijuana as a treatment, and
her seizures were reduced to two or three a month.

But there is still hesitation among some medical professionals who say
the science has not caught up with the movement.

"I don't want to have children with these seizures or want their
families to be faced with that kind of pain,"  said Dr. Judith
Schaechter, interim chair of Pediatrics at the University of Miami
Miller School of Medicine. "And I know these families are hoping
this is the right thing to do. But I also want to be cautious and use
science and clinical trials first to see what we are working with."

With so many states considering legalization, the American Epilepsy
Society issued a position statement: "The recent anecdotal reports
of positive effects of the marijuana derivative cannabidiol for some
individuals with treatment-resistant epilepsy give reason for hope.
However, we must remember that these are only anecdotal reports and
that 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 ..."
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