Pubdate: Sun, 27 Oct 2013
Source: Denver Post (CO)
Copyright: 2013 The Denver Post Corp
Contact:  http://www.denverpost.com/
Details: http://www.mapinc.org/media/122
Author: Dave Phillips, The Gazette

"ONLY OPTION LEFT"

Families Come to State for Marijuana Oil That May Reduce Seizures

Colorado springs - When Mohammad Halabi was a boy, his parents fled 
war in Lebanon to give their child a chance at life.

This month, as Halabi drove to Denver International Airport to pick 
up his wife and 2-year-old daughter, he realized he was doing the same thing.

Halabi's daughter, Mia, has severe epilepsy. Treatment by some of the 
country's best neurologists and with the most powerful drugs has done 
little. This year, doctors told him to prepare for her death.

"No matter what we did, nothing helped. She just got worse until she 
was almost a vegetable," he said. "She had no chance at life."

Then in July, he and his wife, Miriam, saw an online video of a 
Colorado Springs girl's astounding recovery from epilepsy using an 
oil made from a special strain of marijuana. The Halabis live in New 
York City, where medical marijuana is illegal.

"As soon as we saw it, we knew we had to go," he said.

Families of children with severe medical problems are moving to 
Colorado from all over the country to get the oil that appears to be 
working. They call themselves marijuana refugees.

"These families are really desperate," said Dr. Margaret Gedde, a 
Stanford-educated Colorado Springs pathologist who has recommended 
medical marijuana for many of the arriving children. "They've tried 
all the drugs, and nothing has worked. This is the only option left."

Repeated studies going back to 1970 have shown a strong potential for 
cannabidiol to help epilepsy, but federal laws made cannabis 
difficult to study in the United States. In addition, there is a 
stigma in the medical field.

While pharmaceutical-grade cannabidiol is available in other 
countries, clinical trials for approval by the U.S. Food and Drug 
Administration are just getting underway.

In 2012, 5-year-old Charlotte Figi, who has a genetic disorder called 
Dravet syndrome that causes catastrophic seizures, was given a new 
chance at life from marijuana. Doctors tried everything from 
barbiturates to extreme diets to control the disorder, but nothing 
helped. She was in the hospital constantly. Twice her heart stopped. 
Not wanting to prolong their child's suffering, her parents signed a 
"do not resuscitate" order.

As a last-ditch effort, they decided to try marijuana, and it worked.

Experimenters developed a new strain of marijuana that was 
exceptionally low inTHC- the chemical that makes users stoned - and 
exceptionally high in a chemical called cannabidiol that has no 
intoxicating effects, but that a handful of decades-old studies 
suggested might reduce seizures.

The original developers called it Hippie's Disappointment, because no 
one wanted to buy it. They have since renamed it Charlotte's Web 
after a girl who once had 300 seizures a week and now has, on 
average, fewer than one.
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