'We need this now:' NC parents seek marijuana oil for children with seizures
Posted February 24, 2014
Updated February 25, 2014
Raleigh, N.C. — Zora Carlin had her first seizure when she was 6 months old. Her parents cried and prayed as they watched their daughter convulse, but the horrifying sight soon became a regular occurrence in their Johnston County home as the girl began suffering up to 40 seizures a day.
Five years later, Zora’s parents say they have exhausted all options and are hoping oil from a marijuana plant can help their daughter – a medication that is illegal in North Carolina.
“It’s hard. It’s very hard,” said Dawn Carlin, Zora’s mother. “You just sit there and watch her (having seizures).”
Zora, now 5, has a rare, hard-to-treat and debilitating form of epilepsy known as Dravet Syndrome for which there is no cure. Her parents say they have tried 14 different medications, various diets, vitamins and supplements, but they’ve had little to no effect on their daughter’s condition.
“You start losing hope, and then you hear there’s something out there that changes it, but it’s illegal,” said Steve Carlin, Zora’s father.
The medication – an oil extracted from a specially grown marijuana plant – is legal in Colorado, where the medicine has shown great promise in children in the same situation as Zora. The cost varies by the child's weight and can range from less than $100 per month to several hundred dollars.
“My heart’s breaking because my daughter can’t get this right now,” said Steve Carlin, who says his family is not able to move west to get the medication.
Raleigh mother Liz Gorman moved to Colorado in December so that her 7-year-old daughter, Maddie, could get the medication, called Realm Oil, which she swallows a dropper full of three times a day. At her worst, Maddie was averaging about 100 seizures a day before the move out west, according to her mother.
“As far as her development is concerned, it does feel like a miracle,” Gorman said. “Her morning cluster that used to have 30 (seizures) in it … that went away almost immediately/"
"The biggest changes we’ve seen are in her alertness, her awareness and her ability to learn new tasks," Gorman added. "And she has made more progress in one month with fine motor skills than she’s made in five years."
The Gormans are paying a hefty price to find something that will help their daughter. There's the emotional cost – Gorman's husband stayed behind in Raleigh for work – and then there’s the financial burden.
“It feels pretty ridiculous that we would have to move across the country to access this medicine, especially given the results people are seeing,” Gorman said. “So, what are we saving it for if not for something that could potentially really change our daughter’s life?"
"I hope legislators will pay attention," Gorman added. "I hope other parents in North Carolina who want this will contact our legislators, because I think that’s what it’s going to take."
WRAL News traveled to Colorado, where Jordan Stanley and five of his brothers are growing a special strain of the marijuana, called Charlotte's Web. The strain is named after 7-year-old Charlotte Figi, one of the early success stories. She went from having 1,200 seizures a month to about three or four.
“There are no negative effects we’ve seen. Even though it may not do the miracle for someone else’s child like it does for Charlotte, it’s still giving them a better quality of life,” Stanley said. “(It’s) something that is natural, something that doesn’t get them high, something that has no psychoactive effect.”
People who take the oil don’t get high, Stanley says, because Charlotte's Web has extremely low levels of THC, or tetrahydrocannabinol, the psychoactive ingredient in marijuana. Recreational marijuana averages about 15 percent THC and can be as high as 25 to 30 percent, Stanley said. Charlotte's Web has 0.03 percent THC.
“There is absolutely zero effects of them getting high whatsoever,” he said.
Charlotte's Web does have extraordinarily high levels of cannabidiol, known as CBD, a non-psychoactive component, which research shows has a growing number of therapeutic benefits.
“It’s almost unbelievable it’s working that well for these families,” said Stanley, who says he is providing the oil to more than 200 people.
Dr. Yael Shiloh-Malawsky, a pediatric neurologist at UNC Hospitals in Chapel Hill, says the CBD oil is not approved by the U.S. Food and Drug Administration. However, for someone like Zora, it’s worth giving the medication a try before it is approved, given the severity of her disorder.
Without some kind of improvement, Shiloh-Malawsky says, Zora is at a higher risk for SUDEP, Sudden Unexplained Death in Epilepsy.
“This is one of the reasons that we’re in great urgency to try whatever we can to help control her epilepsy better,” Shiloh-Malawsky said.
“We need this today. We need this now," Steve Carlin said. "(Zora) doesn’t have time. She doesn’t have time to wait. Tomorrow can be her last day.”
The Carlin and Gorman families say they are not interested in legalizing medical marijuana in North Carolina, only the oil extract. They say the side effects from their daughters' prescribed medications are often worse than the seizures themselves, adding that the drugs are mind altering and developmentally delaying.
“One medicine, (Zora) would bang her head and scratch herself until she would bleed," Dawn Carlin said.
They continue to hope the marijuana oil will be available in North Carolina soon.
“I try not to get my hopes up too much about anything, but this is the first time in a long time that I’ve really been able to feel truly hopeful,” Gorman said.
GW Pharma currently has Epidiolex – cannabis oil – in trials for treating epilepsy, but it is not expected to make it to market until 2019.