Pubdate: Thu, 18 Jul 2013
Source: Toronto Star (CN ON)
Copyright: 2013 The Toronto Star
Contact:  http://www.thestar.com/
Details: http://www.mapinc.org/media/456
Author: Marco Chown Oved

COULD POT STOP THIS BABY'S SEIZURES?

Toronto parents struggling with baby Kaitlyn's Dravet syndrome call
for clinical trials here after miraculous results in Colorado.

Kaitlyn Pogson has lived through more seizures than calendar
months.

The 9-month-old's epilepsy sends her tiny body into convulsions that
last up to an hour. Right now they happen every three days, but as she
grows the seizures will become more frequent - potentially topping 300
per week.

That's one every 34 minutes.

Every time she has a seizure, Kaitlyn's parents, Barry and Shannon,
call 911 and take her to the emergency room, where doctors give her
antiseizure drugs that don't work. It's a frighteningly repetitive
routine.

Kaitlyn's condition is so severe they have a special name for it:
Dravet syndrome. Not only does it grow worse over time, it's
notoriously resistant to traditional medication.

But a growing number of doctors and families with Dravet say they've
stumbled upon a miracle drug: marijuana.

"Kate is on morphine and three other drugs not normally given to
children," and they're not working, Barry said. "Rules are already
being broken. So why not this one?"

Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy
(SMEI), is a catastrophic form of epilepsy that occurs in one in every
30,000 births. Besides leading to developmental delays, the syndrome
is also associated with higher rates of sudden unexplained death.

When Kaitlyn had her first seizure at barely 2 months old, Barry
didn't even know what a seizure looked like. Now, between hospital
visits and work, he's been researching online and discovered the story
of a little girl in Colorado who was able to reduce her seizures by
more than 99 per cent.

With a small dose of marijuana extract administered orally three times
a day, little Charlotte went from being "flaccid, lying in her mothers
arms and unresponsive," to a walking, talking little girl, said Dr.
Alan Shackelford, who oversaw her treatment.

"The response was instantaneous," Shackelford told the Star by
telephone. "After the first dose, the seizures stopped =C2=85 and she
didn't suffer a seizure for seven days."

Charlotte now suffers one seizure every other week, Shackelford says,
"a remarkable and heretofore unprecedented change."

The key is a strain of marijuana that is high in the active substance
Cannabidiol (CBD) but very low in THC, the chemical that gets you high.

Shackelford says Colorado's liberal marijuana laws allow doctors like
him to perform "valid observational study" and publish their results.
But federal regulations are still formidable barriers for any doctor
to undertake formal clinical trials with a Schedule 1 controlled
substance like cannabis.

"We need to study this to know what's going on, what dosages work best
and develop treatment for children and adults alike," said
Shackelford.

At New York University, Dr. Orrin Devinsky has just received FDA
approval for a clinical trial to study the safety and tolerability of
CBD in children with epilepsy.

"At this point, I think we really lack much data," said Devinsky, who
points to promising results in animals, but says the real push came
from the anecdotal evidence provided by parents in Colorado.

"I've spoken with these parents, and I think they're solid, good,
loving parents, who've had very good experiences. Whether this will be
borne out by scientific studies is uncertain," he said.

If the trials go perfectly and there are no setbacks, Devinsky
estimates that CBD could be approved in the U.S. in two to three years.

In that case, parents from across the country - whether in
pot-friendly Colorado or pot-hostile Texas - would have access to the
drug.

But in Canada, despite our relatively liberal medical marijuana laws,
there still isn't a single trial or study taking place on the use of
high-CBD marijuana for juvenile epilepsy.

Health Canada rules allow anyone suffering from epileptic seizures to
apply for a licence to possess marijuana for medical purposes. With
that licence, you can also apply to grow your own marijuana.

The problem for the Pogsons is that the marijuana available in Canada
has far too little CBD and too much THC to treat an infant like Kaitlyn.

"CBD is very difficult to procure. It's a freak form of marijuana,"
said Barry. "You can't import it to Canada."

The Pogsons have started an online petition calling on Health Canada
to allow CBD into the country and to sponsor medical trials to study
CBD's benefits and the appropriate dosages.

"There isn't really any other solid hope for a treatment out there,"
said Barry. "All the drugs either don't work, or start out working and
then stop."

In the past few months, the Pogsons moved out of their new house near
Oshawa and into a condo downtown, to be closer to the Hospital for
Sick Children. They take shifts watching over Kaitlyn while she
sleeps, for fear of a nocturnal seizure. They're exhausted, irritable
and have very little hope things will improve in the near future if
they can't somehow bring CBD into the country.

"This could be what she needs," Barry said.

Medical marijuana without the high

Marijuana growers in Colorado have developed a special strain of pot
with very little THC - the chemical that gets you high - and very high
Cannabidiol (CBD), the component believed to reduce seizures. They've
dubbed it "Charlotte's Web" in honour of their first patient.

In a video detailing Charlotte's turnaround, grower Josh Stanley says
the strain, which has only 0.5 per cent THC and 17 per cent CBD, is
"the future of medical marijuana."

A similar strain is being developed in Israel, says Dr. Alan
Shackelford, who hopes to secure funding to conduct clinical trials
there.

GW Pharmaceuticals in the UK is developing a CBD medication to treat
epilepsy. The company, which specializes in drugs made from
cannabinoids, has a spray that contains a 1:1 ratio of CBD to THC
content that's currently available to multiple sclerosis patients in
Canada and holds high hopes for a future CBD-heavy medication.

"There's been some very promising preclinical work," said company
spokesman Mark Rogerson. "We think that there is definitely scope for
clinical trials for a product like this."
- ---
MAP posted-by: Matt