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Parents say “Charlotte’s Web” pot helps kids suffering severe seizures

COLORADO SPRINGS, Colo. – Legislation to legalize a controversial treatment for children with severe epilepsy advanced Thursday in Utah, Georgia and South Carolina.

The treatment uses oil derived from marijuana. For not, it is only available in Colorado.

Aaron Klepinger considers this a miracle cure: the daily dose of liquid marijuana extract, known as Charlotte’s Web, given to his 8-year-old son, Hunter.

The Klepingers believe it controls seizes so severe they caused brain damage. Traditional epilepsy drugs were ineffective for Hunter. The Klepingers say that the extract has reduced the frequency of seizures from as many as 100 a day to as few as two a week.

“When he was on pharmaceuticals, he was screaming all the time or sleeping all the time or having more seizures. He’s more alert and more happy than he used to be,” said Dawn Klepinger, Hunter’s mother.

Aaron Klepinger says a daily dose of liquid marijuana extract helps prevent his son, Hunter, from suffering severe seizures. CBS News The Klepingers moved to Colorado, where marijuana is allowed for both recreational and medical use, from Georgia, where any use of marijuana is illegal.

“I feel horrible that a child’s zip code is what determines their ability to get medicine that could potentially save their lives,” Aaron Klepinger said.

Asked whether he believes the liquid marijuana extract can save Hunter’s life, the father replied: “Absolutely. I think it can.”

Legislators in 12 states are considering proposals to allow a version of Charlotte’s Web to produced or sold legally.

The extract has a very low dose of THC, the chemical in marijuana that gives people a high. Parents believe other chemicals in the extract reduce the seizures. But there is no scientific study to prove the effectiveness and safety of Charlotte’s Web to treat epilepsy.

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“I think we have real reason to be concerned,” said Dr. Amy Brooks-Kayal, first vice president of the American Epilepsy Society. She worries that parents are sailing into uncharted waters.

“We do know from basic science studies that marijuana derivatives can completely stop the cellular mechanism for learning and memory. And right now I don’t know the benefits, the likelihood that it is going to help. And I know nothing about the risks,” she said.

There are about 200 patients in Colorado using the extract, half of whom moved from out of state to use it legally.

Dangerous or not, they feel it the best hope for their own miracle against epilepsy.

Charlotte's Web: the families using medical marijuana to help their kids

Kim and Chris Clark had tried almost every medical option available for their 10-year old son Caden, who has severe epilepsy. Then they discovered medical marijuana.

Caden Clark has Lennox-Gastaut Syndrome, which gives him between 10 and 70 seizures a day. On bad days he would have over 100.

“We had really started getting afraid, because he had reached what they call expiration age,” said Kim Clark. “These children tend to get to this point and they just seize so much, you know, it gets critical.”

The Clarks have tried over 20 different types of medicine, a brain lobectomy and extreme diets to alleviate Caden’s seizures – with varying degrees of success and side effects.

“I hesitate with the word ‘miracle’, because it’s not that easy. We’re experiencing things we never would have without it, but we’re still dealing with the delicate balance of his brain,” Kim said.

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For Chris Clark, medical marijuana was a last resort. Chris has worked for the Atlanta police department for 26 years, and is currently in charge of monitoring Atlanta’s drug evidence.

“I was real nervous about what my peers would think about me doing this,” he said. “I finally came to the conclusion that if there is a chance that this product could help my child, then you’ve got to do it.”

In December 2013, the Clarks moved to Colorado Springs to legally obtain a strain of marijuana called Charlotte’s Web. Chris stayed behind in Atlanta for work, and visits the rest of his family whenever he can.

The move appears to have paid off. By the Clarks’ estimate, Caden has had a significant reduction in seizures. “We had never had a seizure free day ever so to go four or five days (without a seizure) was mind-blowing,” Kim Clark said.

‘It was their last option’

The Stanley brothers first created Charlotte’s Web five years ago to explore the medical benefits of marijuana for people with cancer. When they were first approached by the Figi family, who wanted to give the drug to their young daughter Charlotte, who suffered from severe epilepsy, the brothers were cautious.

“All I saw was us in orange jumpsuits at the time. But it was their last option,” Jesse Stanley said.

More than 400 families are using Charlotte’s Web to treat their children, and thousands more are on the waiting list. To meet the demand, the Stanley brothers are expanding their operation, and hope to get everyone in Colorado off the list by the end of 2014.

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Charlotte’s Web was once known as ‘Hippie’s Disappointment’ because it doesn’t get its users high. The drug has higher amounts of cannabidiol (CBD) and lower doses of THC, which is the psychoactive part of the plant, compared to recreational marijuana.

There is no conclusive evidence why CBD may limit seizure activity, because marijuana is a schedule 1 drug, which the DEA deems to have no medical use, and scientific research on marijuana is still in its infancy.

Dr Orrin Devinsky, who leads the NYU Epilepsy Center, is one of handful of doctors who has started testing the effects of CBD on children. He must store the drug in a 1,200lb safe at his lab due to federal regulations.

“It’s common for people hearing incredibly wonderful anecdotal stories to feel like they know the answer, and no one should feel like today, based on the data, that anyone has any of the answers about safety or efficacy,” Dr Devinsky said.

At the Children’s Hospital Colorado, doctors have reported cases of children who have gotten worse on Charlotte’s Web, and, in some cases, gone into intensive care units. Kim Clark says that dozens of families have had to give up the Charlotte’s Web treatment and move back home because it was either too expensive or didn’t work for their children.

For now, the evolving legal status of marijuana will mostly keep doctors and families guessing.