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Gazette Premium Content Families looking to cure epileptic children find first dose of hope with special Colorado marijuana oil

54 photos photo - Sydni Yunek laughs while playing with her mother in their apartment Friday, October 25, 2013 just one day after she started a dose of the Charlotte's Web cannabis oil. Just 30 hours after taking the oil, improvements were noticeable as Sydni's seizures dropped and she started forming more complete sentences and could walk without falling over. Michael Ciaglo, The Gazette + caption
Sydni Yunek laughs while playing with her mother in their apartment Friday, October 25, 2013 just one day after she started a dose of the Charlotte's Web cannabis oil. Just 30 hours after taking the oil, improvements were noticeable as Sydni's seizures dropped and she started forming more complete sentences and could walk without falling over. Michael Ciaglo, The Gazette
By Dave Philipps Updated: November 3, 2013 at 11:00 pm

Marisa Kiser-Podvin walked into a Colorado Springs marijuana dispensary with her toddler strapped to her chest and asked for a small bottle she hopes will save her child's life.

Like dozens of families from all over the country, Kiser-Podvin recently moved to Colorado, drawn by stories of local children making astounding recoveries from epilepsy using a special marijuana oil.

All fall, the families have waited for a new harvest of the strain, known as Charlotte's Web, which is grown only in Teller County by a group of six brothers - the Stanleys.

Now, with the harvest completed, many are getting the oil for the first time.

"I'm so excited. It's like Christmas morning," Kiser-Podvin said two weeks ago when the dispensary manager went to get her oil from a refrigerator in the back. "I'm scared, too, because it might not work, but we have to try."

Charlotte's Web has never been tested by the Food and Drug Administration. There are no scientific studies of its effectiveness or risks in children. In fact, it's considered an illegal drug with no medicinal potential by the federal government.

But the families who have come to Colorado Springs in search of a cure have few other choices. Traditional drugs and surgeries have failed. Their faith in the medical establishment is gone. Their sole hope rests with a few examples, spread by online video, of children who were near death and are now thriving.

It will likely be months or years before it's clear whether the oil can reliably help epilepsy in a broader population, but after the first few doses, parents are noticing encouraging signs: Fingers moving that have not moved in years, eyes tracking that were dazed, lips smiling instead of twisting in seizures, kids long hidden in a mental fog suddenly doing what kids do: Asking questions.

The changes might seem small to most people, but for parents who have watched their children suffer, they are monumental.

"It's the miracle we have been asking God for," said Catherine Chacon. Her 5-year-old daughter, Ailani, who uses a wheelchair and was largely unresponsive, began moving her hands and giggling for the first time in years a few days after taking the oil.

If the oil helps these kids, those involved say, it will have impacts far beyond their families, improving lives of millions with epilepsy and potentially spurring dozens of states where marijuana is illegal to change laws.

"I really feel everyone is watching us," said Kiser-Podvin, who moved from North Carolina in July. "Maybe this can make a real difference."

As she waited for the oil, her 18-month-old son, Ezra, snoozed on her chest. She looked down at him, smirked and said, "You can tell he's really excited."

Searching for help

Ezra started having seizures at 3 months old - sometimes 40 per day. After 14 medications and about $1 million in medical tests and treatments, he was no better. One medication actually doubled the number of seizures, sending him into a coma. Others, including addictive barbiturates, have made him listless and unresponsive.

"It just couldn't go on anymore; that's why we came to Colorado," Kiser-Podvin said.

Accompanying her to the dispensary was Holli Brown, who moved from Missouri in August to help her 9-year-old daughter, Sydni Yunek.

Sydni has been having seizures since she was 4.

She goes limp when one hits and wears a pink bedazzled helmet to protect her head. Though she can walk and talk a bit, simple functions take major effort. She has a feeding tube. She has lost her swallowing reflex and uses scarfs to soak up her drool. Drugs have not helped. Neither has a pacemaker-like nerve stimulator in her chest.

"It's funny, when people hear marijuana and think we are going to get our kids high," Brown said. "The truth is doctors have been getting our kids high for years."

Charlotte's Web, parents say, is harmless in comparison. The strain is exceptionally low in THC - the chemical that makes users stoned - and exceptionally high in a chemical called cannabidiol that studies suggest can inhibit seizures and help brain cells heal.

The chemical binds to synapses on neurons, making them less erratic and calming electrical storms in the brain that can cause seizures.

Parents whose children have used the oil for more than a year say it has no obvious side effects.

At the Stanleys' dispensary, Indispensary, tucked between a Wendy's and a Starbucks on the city's west side, the two mothers paid about $100 each for small bottles holding a month's supply of oil. They then headed back through the dispensary's lobby, which was festooned with bongs and a Bob Marley poster, and hurried home to give their kids their first dose.

"If we can just stop the seizures, I think Ezra can recover," Kiser-Podvin said. "If I can get him off the other drugs, just that would be a blessing. He can catch up. He can have a chance. I really believe that in my heart."

'It's magic, magic'

"You can't sleep through your first dose!" Ezra's grandmother, Steva Kiser, said when they got home, tickling the boy's nose as he snoozed in his mother's arms.

They had made a sign celebrating the occasion and invited friends over to take pictures.

"Want to open for me?" Ezra's mother said, tickling Ezra's nose and kissing his cheek. Ezra coughed slightly but continued to sleep. Except for seizures, he doesn't move much.

His mother took a tiny syringe, slid it deep into his mouth and squirted a single drop of green oil under his tongue.

Ezra did not respond.

The gathered friends clapped.

"Good job!" Ezra's mother whispered to him.

He kept sleeping.

For Sydni's first dose, her mom took off the helmet so her daughter could look nice for photos. They had braided her hair that morning.

As Sydni waited for the oil, she sat on the couch drooling. Her head kept dropping as she blanked out from small seizures, like a light being flicked on an off. She is on four drugs with a tangle of side effects: lethargy, irritability, slurred speech, nausea, weight loss and aggression. She has not been drug-free in years.

"I just want to give my kid a chance at a real childhood; that's what this is about," Brown said.

Brown put the oil through a feeding tube implanted in her daughter's stomach. With practiced hands, she pulled up her daughter's shirt, attached a syringe to the tube and pressed the plunger.

"It's magic, magic," she told her daughter as she finished. "Give me a high-five!"

Sydni uncurled her fingers and, with effort, slapped her mom's hand.

Brown laughed and hugged her daughter.

"What are we going to do?" she said. "Kick your seizures . "

"In the butt!" Sydni said.

Subtle signs

Families all over the city gave their children a first dose. Then they waited. And watched.

Parents started seeing signs that at first were so subtle they were not sure they had really seen them.

Dara Lightle moved from Virginia for her 9-year-old daughter, Madeleine, who was learning at a kindergarten level until she started to slip this year.

Hundreds of tiny seizures per day were erasing what she had learned in home-school lessons, her mother said. She started to even forget obvious things, like which door was the bathroom. Last week, she began recognizing letters in her lessons and saying the words out loud.

"We were shocked," Dara Lightle said. "I don't want to get my hopes up, but my husband was crying when I told him over the phone."

Catherine Chacon, who moved from Los Angeles with Ailani, saw the girl start to move her hands and feet after taking the oil. Ailani has a feeding tube and tracheostomy. Her only movement for years has been seizures. Chacon's dream is to see her daughter ride a bike.

"Now she is moving her little hands!" Chacon said after her daughter had been taking the oil for four days. "Her seizures are much less. Whatever is connecting in her brain, it is working.

"And you know what, she is laughing. I'm serious. It's a little sound, but when you tickle her, she says 'hee-hee.'?"

Dr. Margaret Gedde, a Colorado Springs physician who referred several epileptic children for the oil, said she has heard similar stories of improvement.

The patients start on a very low dose and it increases gradually during several weeks, so improvements will likely continue, she said.

"No treatment works for everybody, and there are still a lot of unknowns," she said, but initial results are encouraging.

"It makes sense," she added. "Seizures and a lot of the drugs these kids are on essentially stop development. If the oil can control the seizures, the brain will naturally start to function better."

"Just as important," she said, "the cannabidiol seems to act as a neuro-protectant, which means it will help the brain to heal."

She said children will likely see more improvements if they are able to be weaned off other drugs.

A few days after sleeping through his first dose, Ezra started waking up. At first just a little. Then he stayed awake for hours.

He started moving his head and eyes, focusing on things around the room.

"For months, he just stared in one direction and drooled," his mother said. "Now he will cry; he is moving his arms. He is acting like an infant. We have not seen that in a long time."

Sydni Yunek started swallowing. It was the type of progress, her mom thought to herself, that you can not misinterpret.

Then her daughter started asking questions.

"I know that sounds small, but she has never done that before!" her mother said, unable to hide the excitement in her voice.

"We had a conversation; it was the coolest thing," Brown said.

The two share a bed, and the night after getting her first dose, Sydni stayed up talking about the colored lights her night light throws on the ceiling. The two talked about what they did that day and would do the next day.

Silence settled over the room.

Sydni turned to her mother and said, "Are you going to talk?"

"What do you want me to say?" her mom asked.

"A word," Sydni said.

Her mom paused.

"Supercalifragilisticexpialidocious," she said.

Another pause.

Then Sydni said, "What's that mean?"

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Contact Dave Philipps:

636-0238

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CREATION OF CHARLOTTE’S WEB

To make the Charlotte’s Web oil, whole marijuana plants are cut and hung to dry, then bagged and shipped to a Denver laboratory operated by the Stanley brothers, who have a Teller County grow operation.

In the lab, each plant is chopped and soaked in alcohol, which separates the oil containing cannabidiol, THC and other compounds from the leaves.

The liquid is then strained and heated in a sophisticated evaporator that boils off the alcohol, leaving only oil. The oil is then run through a sophisticated scanner, called a high performance liquid chromatography machine, that measures exactly how much cannabidiol and THC are in each gram. The pure oil is then cut with olive oil to give it a consistent amount of cannabidiol per milligram and individually mixed for each patient.

The oil can be mixed in food or squirted into the mouth. Typical doses are only a few drops.

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