A Canadian family has moved to Colorado to get a medical marijuana extract not available in Canada that the parents say has greatly helped their 13-month-old daughter who has a rare and serious seizure condition. 
 
Barry Pogson told CBC Radio's The Current on Tuesday that his daughter Kaitlyn was having seizures that lasted four or five hours. In one case, she stopped breathing and had to be intubated. 

 Kaitlyn Pogson

Kaitlyn Pogson had seizures that lasted for hours from Dravet syndrome, a rare form of epilepsy. (CBC)


 
The family was concerned because when seizures last more than five minutes, there can be irreparable brain damage.  

"We were just getting longer and longer seizures so we kind of made the decision that it's just not going to come to Canada soon enough for us and there's no sense waiting and we just  went," Pogson said. 

A week after starting treatment with a medical marijuana extract called cannibidiol that is only available in Colorado, Kaitlyn was more alert, slept better and hasn't had to return to emergency for seizures, he said.  
 
The strain of marijuana was named "Charlotte's Web" in honour of a girl who had dozens of violent seizures daily from the same life-threatening form of epilepsy called Dravet Syndrome. The strain is engineered to be exceptionally low in THC, the compound that produces a "high."
 
Dr. Alan Shackelford oversaw Charlotte's treatment in Denver. Schackelford said when he saw her in February 2012, she had several seizures on the way to the appointment and while he was examining her, was drowsy, unresponsive and unable to speak or walk without assistance. 
 
 "It was really quite a dramatic scene, which pointed out to me the absolute necessity of intervening with this really almost last ditch treatment as quickly as we possibly could." 
 
Now, Charlotte is almost a normal child and her parents are no longer 24/7 caregivers, Schackelford said. 

Ethical concerns

Arthur Schafer, director of the University of Manitoba's Centre for Professional and Applied Ethics in Winnipeg, says there are serious ethical concerns associated with administering medical marijuana to children.   

Schafer said he's concerned about the risks of cannibidiol to the developing brains of infants and children, but acknowledges that he would have made the same decision as the Pogsons. 
 
Schafer thinks cannibidiol should be available under Health Canada's special access program for patients who have nothing to lose. 
 
"If these drugs are being given, shouldn't they be given in a way that's part of a test where we're monitoring the results and comparing short term, medium term and long term what happens to these children?"