Pubdate: Thu, 24 Apr 2014
Source: Vancouver Sun (CN BC)
Page: A11
Copyright: 2014 Postmedia Network Inc.
Contact:  http://www.canada.com/vancouversun/
Details: http://www.mapinc.org/media/477
Author: James Miller, Penticton Herald, The Canadian Press
Note: Canadian Press with files from Matthew Robinson, Vancouver

FAMILY WITH EPILEPTIC CHILD WANTS LAW ALLOWING USE OF MEDICINAL POT

PENTICTON - When a retired police officer from Summerland left his job
after 25 years, he never imagined fighting for his little
granddaughter to be given marijuana.

Chris Nuessler, and his wife Elaine, wants Canada to allow two-year-
old Kyla Williams to be given a form of medical marijuana some say
prevents seizures resulting from epilepsy, a claim researchers are not
yet ready to back.

The girl's parents, Jared and Courtney Williams, along with the
Nuesslers, have been researching medical pot use and speaking with
experts to build what they're calling "Kyla's medical team."

They say Kyla has suffered severe side effects from prescription drugs
when she could be helped like other children in the United States.

A strain of marijuana commonly called Charlotte's Web has been said to
help kids in the U. S., but it's illegal in Canada.

It contains very little THC, which provides the buzz recreational pot
users crave, and is mostly made up of cannabidiol, or CBD, which
proponents of the drug claim limits the severity and frequency of seizures.

Named after a little girl named Charlotte Figi who has epilepsy, the
weed has apparently allowed her to develop and enjoy a fairly normal
life.

But clinical tests of CBD's efficacy in stopping seizures are still in
their early stages and researchers can't say with certainty whether it
helps or harms children and young adults. Concurrent studies at New
York University's Langone Medical Center and University of California,
San Francisco, are ongoing, both aiming to determine whether a
purified, liquid version of the drug, stripped of THC, is safe for
kids. "Studies have been conducted in healthy adults who have shown
CBD to be well tolerated and safe," said Joseph Sullivan, the director
of the UCSF Pediatric Epilepsy Center in a news release issued shortly
after the trials began. "While we don't know the full side-effect
profile in children, this study will allow us to follow the children
closely."

A review last month by researchers David Gloss and Barbara Vickery of
studies on the drug's efficacy found that "no reliable conclusions can
be drawn at present ... as a treatment for epilepsy."

But parents have claimed otherwise. A survey of 19 parents in a 2013
study titled Report of a parent survey of cannabidiol-enriched
cannabis use in pediatric treatment-resistant epilepsy, found most
claimed to have seen a reduction in their child's seizure frequency
while taking the drug.

In Canada, the only form of legalized medical marijuana is dried,
meaning Kyla would have to smoke it.

Chris Nuessler said his view of marijuana as medicine has radically
changed since his policing days. "For me it was back to the 1980s and
1990s mindset when I was busting people. I had to do a 180 (degree
turn) and start researching this."

Kyla appeared to be a healthy, little girl for the first six months of
her life until her mother noticed she wasn't progressing at a normal
rate and had unusual eye movements. After she was seen by a
pediatrician, Kyla was rushed to BC Children's Hospital, where she was
diagnosed with retractable seizure disorder.

- - Canadian Press with files from Matthew Robinson, Vancouver 
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