Pubdate: Fri, 11 Oct 2013
Source: Salt Lake Tribune (UT)
Copyright: 2013 The Salt Lake Tribune
Author: Kirsten Stewart


Treatment - a Strain of Medical Marijuana Low in THC Has Stopped
Seizures in Children With Severe Epilepsy.

Every week a tutor comes to April Sintz's home to teach 7-year-old
Isaac his letters. Developmentally delayed due to a rare seizure
disorder, he is able to grasp the shapes and sounds but soon forgets

"It's one step forward and two steps back," said Sintz, who hasn't
lost hope that Isaac will one day read. Nor has she given up her
pursuit of an "herbal" treatment - available only from a medical
marijuana dispensary in Colorado - that has worked miracles for some
children with severe, intractable forms of epilepsy.

Sintz is a member of Hope 4 Children With Epilepsy, a group of Mormon
moms in Utah that has now found a lawmaker willing to help them secure
a way to legally import an extract from a cannabis plant.

"It's not a drug, it's not medical marijuana," said Rep. Gage Froerer,

The plant, cultivated by the nonprofit Realm of Caring in Colorado
Springs, is high in cannabidiol (CBD) but low in tetrahydrocannabinol
(THC), the psychoactive chemical component of marijuana that creates a
high in users.

It's so low in THC, in fact - it contains 0.5 percent THC and 17
percent CBD, according to Realm of Caring's website - that the
dispensary was having trouble finding a market for it. Then staffers
met Charlotte Paige, a young girl from a conservative military family
in Colorado with Dravet Syndrome, the same disease Isaac has.

Regular doses of the oil-based extract from the plant stopped the
progression of Charlotte's disease, as shown in the CNN documentary

After taking it, she went from having 300 seizures a week to one, at
most, according to the documentary. Previously catatonic, she is now
walking, eating, talking and playing.

Bringing the extract to Utah may not require legislation, said
Froerer, the same lawmaker who pushed a ban on a synthetic form of
marijuana, "spice." But he has committed to sponsor a bill if needed.

First, he is seeking buy-in from the Utah Substance Abuse Advisory
Council to treat the extract as something other than a controlled
substance, allowing families to import it without risk of being arrested.

He's calling it "Alepsia," which means belonging to seizure. Forerer
says the THC levels in Alepsia are the same as those found in
industrial hemp and its extractable oil and proteins, which are used
in over-the-counter lotions and soaps.

Nothing in federal or state law prohibits the sale or use of hemp
products, Froerer said.

"They could go over to Colorado right now and bring it in," he said.
"But they don't want to do anything that might be perceived as
breaking the law."

Twenty states permit medical use of marijuana. Colorado and Washington
also allow recreational use of the drug.

No state has legislation that specifically mentions the use of
high-CBD cannabis in the form of oral concentrates, according to the
Epilepsy Association of Utah.

"Utah has an opportunity to be innovative," said the association's
president, Annette Maughan, whose 6-year-old son also has untreatable

"We are desperate in our need for this legislation to happen in this
session. Our children are seizing every day," she said in a prepared

There have been no randomized clinical trials of Alepsia.

But there is evidence from animal studies and limited clinical studies
in humans that marijuana and its cannabinoids have antiepileptic
effects, according to a 2001 article in the journal Epilepsia. "These
may be specific to partial or tonic clonic [grand mal] seizures," it

A drug company, GW Pharmaceuticals, is running investigational trials
on a CBD drug. But it could take a decade for it to win approval, too
late for kids like Isaac.

Dravet Syndrome is a rare, hard-to-treat form of epilepsy
characterized by the number and severity of seizures, sometimes
hundreds a day, lasting 45 minutes or more.

"We have nothing to lose," said the South Jordan mother of

Isaac was born healthy and developed normally until his first febrile
seizure at 6 months of age, which Sintz said doctors initially
believed was triggered by an immunization.

"We stopped doing immunizations and he stopped having seizures, but
when he turned 3 he started having seizures every day and had to be
hospitalized," Sintz said. "He wouldn't eat or go potty or anything
and had to get a feeding tube. At that point, they told us he might
never walk or talk again."

Genetic tests confirmed Dravet Syndrome.

The Sintzes flew to Miami to meet with Dravet specialists. They tried
everything - special diets, alternative therapies and toxic
psychoactive drugs.

He uses Clonazepam, a benzodiazepine, to stop his seizures and another
drug that helps keep them at bay.

"He can walk and carry on a conversation, but functions on the level
of a 3-year-old," said Sintz.

But the drugs are ruining his kidneys and adding to a heart condition
he has developed. "Our fear is he is going to die of a seizure or
organ failure," she said.

Meanwhile, Issac's mental capacity deteriorates by the

Sintz has contemplated taking Isaac and her two youngest children to
Colorado, but it would mean leaving the team of doctors who monitor
her son and her family support network.

"My sister lives just up the road and helps out. We live in crisis
mode and she keeps us functioning," she said. "My only choice is to go
to Colorado and bring the herb here. But I can't take the risk of
getting caught doing something judged illegal. I can't jeopardize my

There is a waiting list for Alepsia.

But Maughan said if Utahns are granted access, "My understanding that
the plants will then be grown specifically for our children."

Said Froerer, "This herb has no social disadvantages since it is not
and can not be used to get high. I see nothing but positive social and
medical benefits if this will work."

Tribune reporter Kristen Moulton contributed to this story.
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MAP posted-by: Matt