Pubdate: Sat, 02 Jan 2016
Source: Regina Leader-Post (CN SN)
Copyright: 2016 The Leader-Post Ltd.
Contact:  http://www.leaderpost.com/
Details: http://www.mapinc.org/media/361
Author: Tiffany Crawford
Page: D3

MIRACLE AND DILEMMA OF CANNABIS

Parents Using Controversial Oil to Treat Children Are Winging It

Mention Taylor Swift and five-year-old Ella's eyes light up like the 
Christmas tree in the corner of her Surrey, B.C. 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, 
though she is nearly six, has the cognitive ability of a toddler.

She doesn't seem to mind, as her attention is soon diverted by a 
suggestion 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, or scribbling in her colouring book 
as she is now.

She would have slept all day, her few precious waking hours spent 
groggy and depressed due to the effects 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. Frustrated with failed pharmaceuticals, more 
parents are turning to cannabis oil, ideally one 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, B.C. 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, fiveyear-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 until earlier 
this month that an Ontario company became the first 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 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, 
B.C. 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.

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.

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 experienced 
seven medication failures 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 'mom' 
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 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 sessions are an important way for parents to 
discuss current 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 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, handpicked, and 
tested three times in a lab for purity - something she says is hard 
to find in Canada.

Kyla, who takes 2.1 mL of Charlotte's Web, three times 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. 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 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 provincial medical plans.

"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: Jay Bergstrom