Pubdate: Sat, 26 Dec 2015
Source: Vancouver Sun (CN BC)
Copyright: 2015 Postmedia Network Inc.
Contact:  http://www.canada.com/vancouversun/
Details: http://www.mapinc.org/media/477
Author: Tiffany Crawford
Pages: A8-9
Note: Weekend Extra: First of Two Parts

PARENTS FIND SUCCESS TREATING KIDS' EPILEPSY, AUTISM WITH CANNABIS
OIL

But lack of research, poor industry standards and few doctors willing
to prescribe mean parents left to experiment to find consistent dosages

Mention Taylor Swift and five-year-old Ella's eyes light up like the
Christmas tree in the corner of her Surrey living room.

The tree scrapes the ceiling, and Ella is eager to play with the
decorations, but her parents have set up a barricade so she can't
reach the branches.

That's because the young girl has severe epilepsy and autism, and,
although she is nearly six, the cognitive ability of a toddler.

She doesn't seem to mind, as her attention is soon diverted to a
suggestion that she sing a song by Swift, her favourite recording artist.

Yet the strong-willed Ella has other ideas.

"Meatballs," the bright little girl exclaims, and the family launches
into a rousing verse of On Top of Spaghetti.

A year ago, Ella would not have been singing about meatballs, giggling
as she sways her hips to Swift, or scribbling in her Dora the Explorer
colouring book as she is now.

She would have slept all day, her few precious waking hours spent
groggy and depressed because of the medication she takes to control
more than a hundred seizures a day.

Ella still takes a cocktail of anti-seizure pills, but her parents,
Kim and Rob Turkington, have added two shots per day of marijuana oil,
a medicine her parents say has made her more alert, reduced the number
and severity of seizures, and allowed her to develop speech and other
cognitive functions.

They're not alone, as more parents, frustrated with failed
pharmaceuticals, turn to cannabis oil, ideally one that is low in
tetrahydrocannabinol (THC), the psychoactive agent, and high in
cannabidiol (CBD), one of hundreds of compounds found in the marijuana
plant believed to stop seizures.

The family of Summerland toddler Kyla Williams (an epileptic child who
solely relies on CBD oil to stop seizures) has a similar story, as
does Simon Fraser University lecturer Sherri Brown.

They share the same caveat: Cannabis is not a miracle drug, but can
significantly improve the quality of life for some children.

Like Ella, Brown's son, five-year-old Quinn Barker-Brown, became much
more alert after the family last year began using the same brand Ella
takes, called Charlotte's Web, a strain that has a 28:1 ratio of CBD
to THC.

The problem is Charlotte's Web, considered among parents to be the
gold standard in kids' cannabis, is not available in Canada so they
import it from Colorado.

It became legal to buy CBD oil from a licensed producer this summer,
after the Supreme Court ruled Canadians have the right to buy
derivatives of medical marijuana. However, it wasn't available until
earlier this month when an Ontario company became the first to be
allowed to sell cannabis oil by Health Canada.

Many parents still struggle to find a consistent strain low in THC.
They buy from unregulated dispensaries, only to find out by trial and
error that the product they bought was too high in the psychoactive
compound.

No one wants their kids tripping out. That's why many B.C. parents
have in recent months formed a loose network, sharing tips on CBD
dosage and which dispensaries offer the most suitable products for
children, while they wait for science and law to catch up with demand.

Victoria-based dispensary Trees held a packed seminar in Richmond in
September, and plans to hold another in February on Vancouver Island
because the response has been "overwhelming," according to Alex Robb,
community liaison for Trees.

Kyla's grandmother Elaine Nuessler, a pioneer in advocating medical
pot for kids with epilepsy, has also been holding seminars over the
past year. She has spoken to hundreds of families with children
suffering from chronic disease who have expressed interest in cannabis.

While she can only speak to her experience with Kyla's epilepsy,
Nuessler has heard from parents with kids battling a range of
diseases, from spina bifida and scoliosis to arthritis and cancer.

Parents desperate

Even a few months ago, most parents would not go on the record to say
they were giving their kids cannabis for fear of losing their jobs, or
worse, their children.

But so much has changed in a very short time.

Bolstered by a more pot-friendly Liberal government, and outspoken
advocates like Nuessler and the Turkingtons, more parents are coming
forward and saying, "This works for some kids, now let's regulate it
and provide Canadians with a strain suitable for sick children."

"At one point it was legal for my five-year-old to smoke dried
marijuana but not give her the (CBD) oil. That's ridiculous. Who is
going to give their kid a joint?," says Rob Turkington. He scoops Ella
up in his arms, and gently encourages her to sing Frosty the Snowman.

As he explains how the cannabis oil has "given us our little girl
back," he's overcome with emotion. Ella is feisty and artistic, he
says. She colours, sings, dances, and now attends kindergarten at the
same school as her big sister.

The Turkingtons, who say they have never experimented with marijuana
themselves, decided to give cannabis a try for Ella after they saw a
documentary about the healing qualities of CBD. But it wasn't easy at
first.

"Dosing was horrible. You are on your own," says Kim. "At first you
just rely on Facebook pages with other people doing the same thing,
and friends who are doing the same thing with their children. It was
quite difficult."

And it's not cheap. To import a bottle of Charlotte's Web costs about
$430, and lasts about two months in Ella's case. And the costs are
expected to mount as the family experiments with a higher dose.

Ella's neurologist at B.C. Children's Hospital, Mary Connolly, says it
is common for anti-seizure medications to fail. Ella, for example,
failed seven medications before the family turned to CBD oil. Quinn,
who has epilepsy, autism and global developmental delay, switched
medications four times.

"Quinn was in a fog and dopey because of the medication and seizures.
It got worse when we started meds. He was slamming into walls, he
couldn't stand up," said Brown, who spoke at the Richmond seminar and
estimates between 60 and 100 families in B.C. are experimenting with
cannabis for kids.

Connolly does not prescribe cannabis, but she will monitor children in
exceptional cases taking CBD.

After Brown received the CBD oil from a Vancouver Island dispensary,
they began to see a reduction in Quinn's seizures. And when they
switched to Charlotte's Web there was significant improved cognition.

"He's brighter, more attentive, his skills have returned. He will
actually say a few things. He started saying 'daddy' again and 'mum'
so that's really great."

Still, despite these parents' success stories, the medical community
has taken a stance against prescribing marijuana oil for children.

On Dec. 14, the Canadian Paediatric Society published a position paper
on kids and cannabis, saying there is insufficient data to support
either "the efficacy or safety of cannabis use for any indications in
children," and may even cause harm in some conditions.

"The potential for cannabis as a therapeutic agent must be evaluated
carefully for both efficacy and safety in treating specific pediatric
health conditions," the paper states, and goes on to say that where
cannabis is offered in exceptional pediatric cases, physicians should
evaluate individuals for efficacy and risk.

Such is the case with Ella. Connolly closely monitors the successes
and failures of combining the oil with other medications.

While she notes that Ella is benefiting from the CBD oil, she cautions
there is not enough data and she worries that parents will hear
anecdotal reports and then mix up their own batches at home.

For this reason, the cannabis for kids seminars make Connolly
nervous.

"I'm anxious because it's like somebody getting the recipe for
medication and going home to their kitchen and making it up. It's kind
of unbelievable. Can you imagine making up a chemotherapy and making
it up at home for kids with cancer?

"I understand there is a kid with a tumour and the parents are making
up a product that is high in CBD and THC and it's being distributed
among parents," she said.

"I just caution parents that their data is poor. There are some
children who might benefit. People are going to go ahead and so I just
want them to do it safely."

Robb and Nuessler, who both bring in physicians to speak to parents at
their seminars, argue that the sessions are an important way for
parents to discuss where scientists are at with research, and to
create a community so they don't feel so helpless.

Most provincial health authorities, including B.C., also do not
support the use of medical marijuana for pediatric patients.

B.C.'s provincial health officer Dr. Perry Kendall declined to give an
interview on the topic, but said, in an emailed statement, that he
cannot give medical advice to parents on treating their children with
cannabis oil.

"All I can suggest is that they look for a physician with experience
in this area of medicine. I empathize with parents' dilemma and I
endorse the need for scientific trials to determine if and for whom
cannabis derivatives will provide assistance."

Dosing dilemma

Dosing has been a major setback for families. Physicians may authorize
the use of cannabis for children but they don't prescribe a dose so
parents are left experimenting, and many have turned to Nuessler for
advice.

After taking on the role of family advocate for Kyla, along with her
husband, a retired RCMP officer, Nuessler went down to Colorado to
find out how they make Charlotte's Web.

She was impressed with how it is grown organically, hand-picked, and
tested three times in a lab for purity - something she says is hard to
find here in B.C.

Kyla, who takes 2.1 mL of Charlotte's Web a day, went from 300
seizures a day to virtually none. She's also starting to take another
CBD oil even lower in THC called Evolution, from the same Colorado
company that supplies Charlotte's Web. Nuessler said the ratio of the
new product is 46:1 CBD to THC.

Her success story has been widely reported in the media, and Kyla's
response to cannabis has become a beacon of hope for other B.C. families.

Brown has been doing her own monitoring of Quinn, with help from
Nuessler, starting out with a very small amount and recording how it
reacts with different meds.

"It's not a magic bullet. It's another med and they all can be
contraindicated. So you have to be careful because they don't always
interact well together and you have to take the data, and try to
figure out what is happening with behaviour, sleep, food, seizures and
try to track all of those indicators of well-being," said Brown.

Quinn has seizures similar to Kyla's, called absence seizures, but he
also has partial complex seizures. He sees flashes of light and
colours and it makes him quite agitated.

"As a parent, you worry about exposing your child to risk. At the same
time parents are much more educated about CBD than ever before," Brown
said.

Before the seminars, and the proliferation of dispensaries and
compassion clubs, desperate parents would hit the streets and pubs to
find drug dealers, feeling guilty as they handed over cash to dodgy
dope dealers.

Now they can go into one of hundreds of dispensaries around the
province.

But Nuessler says that doesn't mean parents will be able to find a
suitable product.

While Nuessler is an advocate for dispensaries, she says unless
parents have done their research or spoken to other parents with
insight into the best products, they don't know what they are buying.
The amount of THC on the label may be much higher than advertised.

"Many people don't realize how important it is to have a consistent
and high quality product. When you are using cannabis on a child, they
are so sensitive and each child can have a different result," she said.

In Vancouver, there are two dispensaries that Brown will recommend to
parents, though she would not disclose where they are located.

"Dispensaries range from totally sketchy to the ones that I would say
know what they are talking about," she said.

In Canada, marijuana continues to be regulated as a controlled
substance under the Controlled Drugs and Substances Act. Medical
marijuana dispensaries or compassion clubs, not licensed by Health
Canada, are illegal.

As for Ella's family, they'd like to see a cannabis oil developed for
children that's easier to access in Canada, and more affordable,
perhaps even covered under B.C.'s medical plan.

"We're way behind the United States in research and we need to catch
up," says Rob.

"This is not a bunch of hippies taking drugs ... These are scientists,
this is science and we need it for our children."
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MAP posted-by: Matt