Monique Guillamot found what appears to be a life-saving cure for her four-year-old son, but the government says he can’t have it.

Her son Keyaan suffers from a rare condition called Dravet Syndrome and has been on life support four times. Doctors have prescribed large doses of various pharmaceuticals at increasing doses, but nothing helped his frequent seizures until a doctor in Luxembourg prescribed hemp oil in August 2013.

Three days after starting, three of Keyaan’s seizure types stopped. As treatment continued he began to speak more, could go to school longer, and stopped drooling.

“It was unbelievable, the clinical evolution with the marijuana,” said Guillamot, who now lives in Edmonton with Keyaan.

“It was like his brain was woken up. He was on all these meds, sedated for so long, and within a month he was like a new child.”

Unfortunately, the treatment cost $500 a month, a price Guillamot could not afford as a single mom with a son who requires round-the-clock supervision.

The Fort McMurray native moved back to Alberta with Keyaan hoping to find better health care, but the oil her son needs is still illegal here despite herself and other parents taking their stories to elected officials.

“I want to save my son, but I’m not going to jail to do it,” she said. “I do not understand why they don’t want to help them. It breaks my heart. It doesn’t make sense.”

Cannabis plants contain THC and cannabidiol (CBD), the latter of which scientists believe can calm the excessive electrical and chemical brain activity that causes seizures. Keyaan needs an oil extract high in CBD to offer the calming effect without the high.

CBD oil violates Health Canada’s Marihuana for Medical Purposes Regulations that came into effect last April, which only allow licensed producers sell medical marijuana in dried form to be smoked or vaporized.

“He’s four years old, and you’re not supposed to smoke. There’s THC, it’s psychoactive,” Monique said.

Her options are limited. She could get the oil in Vancouver, where dispensaries are common and mostly ignored by police, or find a compassion club to help her with extraction. Both options are expensive and technically illegal.

Monique has watched her son develop two new seizure types while doctors keep increasing his meds. He has dozens of seizures every day and she fears for his life.

“It’s very difficult when you have something that can help your son, and then you have to stop and you just watch them regress again,” she said, choking up.

Vancouver resident Owen Smith was busted in 2009 for selling baked goods with cannabis oil, but he took his case to the B.C. Supreme Court and won in 2012, effectively making the oil legal for medical purposes.

The federal regulations brought in last April re-opened the case before the Supreme Court, where the Harper government continues to wage a costly battle against Smith. A decision is expected in late summer or early fall.

Health Canada maintains dried marijuana is the only form of the plant scientifically supported as a treatment. In a statement issued to the Sun, Health Canada said the decision to pursue authorization for a substance such as CBD oil lies with manufacturers, who can submit for clinical trials.

Terry Booth, CEO with Alberta’s sole production facility Aurora Marijuana, sees extraction being allowed in the near future but knows that’s hardly consolation for kids who are currently suffering.

“I really feel for (Monique), because there has been some unbelievable results with Dravet Syndrome,” he said.

The mother of a nine-year-old girl with Dravet Syndrome in New York successfully fought for state legalization of medical CBD oil last year, but her daughter died before the law came into effect. In Ottawa, the family of a boy named Liam has taken up the fight, and in Colorado, where pot is entirely legal, CNN featured a six-year-old girl who went from having 300 seizures a week to just one after starting CBD oil.

“It’s overwhelming that I live in a country that won’t help me save my son,” Monique said.

GOING UNDERGROUND

Dr. Brian Knight, facility chief of anaesthesia at Misericordia Hospital, deals in chronic pain management and occasionally prescribes marijuana to patients who have struggled with conventional treatments.

He said patients often have difficulty accessing the plant, even with a prescription, and are forced to go elsewhere.

“Quite a few of them are accessing it illegally,” Knight said. “Some, for example, have authorizations but either can’t afford to buy it from one of the registered companies, or the registered company can’t supply them.”

Knight admits he was hesitant to prescribe marijuana after Health Canada legalized it for medical purposes in 2001, and he still views it as a third-line treatment, but he said it has proven more effective than conventional medications for certain people.

“For some patients it has worked extremely well,” he said.

Chris, who spoke to the Sun on condition of anonymity, has gone through three licensed suppliers (not including Aurora, which opened this year) and all have reneged on promises of discounts for people like himself with financial limitations.

There are 50,000 patients across Canada registered for medical pot and fewer than 20 registered producers, and Chris has been told on several occasions there is not enough stock to supply his 90 grams a month.

The 59-year-old has resorted to buying pot illegally when he’s been shut out by the big producers. He said the street price is roughly the same, but it’s impossible to know what he’s getting.

“I’m not in a criminal group or I don’t have people to talk to, so I can’t get good stuff. The couple times that I went to the street to buy it, I was getting crap,” he said.

Chris was first prescribed medical marijuana in 2014 to help alleviate a long list of ailments including pain caused by a chest injury and surgeries on his left shoulder and both knees.

“I’ve got a health file that would scare a person,” he said.

He was on 360 mg of Oxyneo daily but since has been able to lower his dose to 100 mg since starting marijuana. He is trying to get off of the opiate, which leaves him constantly fatigued.

“The term I guess they use for heroin addicted people, after they’ve taken a dose of heroin, is they nod off. And that’s basically what was happening with me (on Oxyneo),” he said. “I was nodding off in mid-conversation with people, even. My eyes would close and I’d be asleep for maybe five minutes.”

Drug plans have covered medical marijuana on rare occasions in Canada – injured soldiers are covered under Veterans Affairs.

But while a 2014 Angus Reid poll showed 59 per cent of Canadians favour flat-out legalization of marijuana, the current government is intent on keeping it out of reach for many.

Knight does not want his patients to break the law, but he knows their hands are sometimes tied.

“A significant number of Canadians smoke marijuana recreationally, and most people would say that’s OK. So who are we to then say you can’t smoke it because you have pain?” Knight said.

kevin.maimann@sunmedia.ca

@SunKevinM

While patients are fighting for better access to medical marijuana, home grow-ops are giving Edmonton police a headache.

The federal government made home growing illegal last year, but medical users fought the new regulations in court and won a temporary injunction allowing those who were currently growing for medical purposes to continue doing so.

The federal government lost an appeal to strike the injunction down in December, and a constitutional challenge remains before the federal court.

Sgt. Dwayne Karpo with the EPS Green Team said home grow-ops often skirt the law.

“It definitely is an abused program,” he said, though he could not pinpoint how many home-based growers are conducting illegal activities in Edmonton.

“It does make our job tougher with so many Health Canada issued licences out there.”

Karpo also worries about break-ins if criminals find law-abiding home grow-op locations.

Last month, two people with valid medical marijuana production licences were busted for trafficking in Sherwood Park.

A man and woman in their twenties were slapped with numerous charges after Strathcona County RCMP and Alberta Law Enforcement Response Teams discovered 198 pot plants and a “large sum of cash” at a residence, as well as 425 grams of “suspected cocaine” at an Edmonton storage locker believed to be tied to the pair.

Dustin William Warwa, 28, and Mary Natasha Rickerd-Rousso, 26, were arrested and charged.

-MAIMANN