Pubdate: Wed, 04 May 2016
Source: Ottawa Citizen (CN ON)
Copyright: 2016 Postmedia Network Inc.
Contact:  http://www.ottawacitizen.com/
Details: http://www.mapinc.org/media/326
Author: Kelly Egan
Page: A1

HOW MEDICAL CANNABIS GAVE LIAM, 8, HIS LIFE BACK

Monday we brought you the story of a desperate mother who, after all 
else failed, began treating her daughter's chronic respiratory 
condition with cannabis oil.

She was rewarded with a police investigation and a heart-stopping 
intervention from child welfare authorities that forced the end of 
the experiment.

Today, a story that worked out differently. Mandy McKnight gives her 
son Liam cannabis every day. He's only eight. Without it, she's not 
sure he'd even be alive today.

"It was really life-changing. No question."

Liam, the youngest of three, suffers from Dravet syndrome, a severe 
form of epilepsy that left him coping with as many as 70 seizures a 
day and in a near-catatonic state from powerful medications. "Before 
we started cannabis, he hadn't had a seizure-free day in two years."

Within days of trying cannabis oil in 2013, the number of seizures 
dramatically decreased and his overall health began to improve. He is 
now stable and back to school.

McKnight, a Constance Bay resident, has gone public with the family's 
story and regularly tries to help parents trying to navigate the 
uncharted territory of cannabis treatment for children.

"One of the toughest things right now is access," she said in an 
interview Tuesday. "It is so hard to find a medical doctor who will 
prescribe for pediatric patients."

Indeed, the McKnights - despite a lengthy relationship with the 
Children's Hospital of Eastern Ontario - had to fly to Edmonton to 
meet a physician who would help Liam get his own medical cannabis 
licence, at age five.

"When we asked about (cannabis oil) at CHEO, we couldn't even get the 
words out of our mouth. It was just, 'No. We do not believe in that 
here,'" though this attitude seems to be changing.

Once Liam had his licence, the McKnights were able to find a legal 
supplier, but the regulations were so rigid that the boy was 
initially required to smoke or vaporize the cannabis, which was impossible.

Instead, they used the dry cannabis to make oil, which Liam would eat 
in paste form (mixed with coconut oil).

However, to monitor the dosage, a sample from each batch would be 
sent to a lab in B.C. (The correct dosage depends on the right 
balance of THC, the psychoactive component of marijuana and so-called 
CBD, or cannabidiol, the medicinal portion.)

McKnight estimates the family was spending about $1,300 a month on 
cannabis and another $125 a month on lab testing. These costs, she 
added, are prohibitive for many families, but consider this:

One of Liam's conventional medicines was costing $1,500 a month and 
he was still so ill that he was frequently in hospital, and several 
times had to be taken by ambulance or airlifted to CHEO. And now, she 
has to fight with her drug plan for coverage of the cannabis, the 
only drug he takes?

She's also frustrated that she still can't buy the cannabis in oil 
form from the family supplier, despite a Supreme Court of Canada 
ruling to that effect in June 2015. So she's stuck making it, which 
takes at least 12 hours in a crockpot and never comes out exactly the same.

In February, the Canadian Paediatric Society put out a position paper 
on the use of cannabis. It was full of red flags and warned about the 
adverse affects on childhood brain development. However, it did 
acknowledge there is evidence the drug is effective for some 
epileptic patients.

"I felt threatened," McKnight said, of reading the document. "I kinda 
felt like they're not going to help any of our kids now."

It's all well and good to talk about the need for double-blind trials 
and placebo effects, she said, but how does that help a child in the 
throes of a seizure today?

"Our kids don't have time. How long do you wait before you act?"

About 90,000 people in Ontario have epilepsy and, of those, 30,000 
are so-called drug resistant. Epilepsy Ontario is regularly contacted 
by parents looking for information about cannabis treatment for 
children. There is, evidently, lots of scrambling for legal access.

"Oh absolutely, it is happening in the shadows," responded Suzanne 
Nurse, a director with the organization, when asked about parental 
attempts through the evolving cannabis landscape. Meanwhile, clinical 
trials are proceeding and the early results, some published in 
Lancet, are promising,

The McKnight family had tried about 10 conventional medications and a 
special high-fat diet, but they just weren't working.

"The future (effects are) unknown. I want him to have a life today."
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MAP posted-by: Jay Bergstrom