CLAYTON, N.C. -
Zora Carlin has been on 12 different medications to help her cope with Dravet syndrome.
"They have side effects, every one of them," Zora's father, Steve Carlin, said.
Dravet syndrome, a rare form of intractable epilepsy that begins in infancy, can leave Zora Carlin experiencing seizures once to 40 times a day. And her parents are willing to try anything to help their daughter.
They would even consider moving 5-year-old Zora to Colorado, allowing them to use a
non-psychoactive strain of marijuana named "Charlotte's Web." The strain is named after a girl who also suffered from Dravet syndrome.
Medical marijuana use is illegal in North Carolina but legal in Colorado.
Since 1996, a total of 20 states and Washington, D.C. have passed laws allowing smoked marijuana to be used for treatment of medical conditions, according to the White House.
"I want to try the CBD oil," said Zora's mother, Dawn Carlin. "At one point, I was giving Zora 20 mg of valium a day, to try to stop the seizures. That is a toxic, mind altering, addictive drug but that was sanctioned. That was OK."
Charlotte's Web is an oil extract that is made so that it is high in cannabidiol, or CDB, and low on tetrahydrocannabinol. THC is a psychoactive substance present in cannabis.
A non-profit in Colorado called the Realm of Caring said it is the only one developing the Charlotte's Web strain. The Realm of Caring said it carries a success rate of 85 percent.
But Dr. Bertha Madras, a professor of psychobiology at Harvard Medical School, has reservations about Charlotte's Web.
"There's still THC in it; deltaninetetrahydrocannabonal, which is a psychoactive content. So, Charlotte's Web, I have absolutely no faith that this is the way to treat epilepsy." Madras said.
Madras said Charlotte's Web isn't medicine but a combination of hundreds of toxic products.
"Including ammonia, including nitric oxide, including many other constituents that are found in tobacco, that have carcinogenic potential," Madras said.
Madras said she empathizes with and understands the feelings of parents whose children suffer prolonged, frequent and uncontrollable seizures.
"Legitimate clinical trials with a pure form of cannabidiol (CBD) are now underway," Madras said. "Only in this type of objective scientific study can the proper doses, therapeutic benefit and safety be measured, without bias. A clinical trial is the gold standard for ensuring that Americans has safe, effective, clean, bacteria-free medicines that are prescribed at an appropriate dose, with warnings and precautions of potential side effects.
"Unless we have effective and well-designed clinical research to evaluate the safety and effectiveness of CBD, Charlotte's web and similar approaches to treatment of serious diseases can compromise the research needed to measure the effectiveness and safety of CBD. It also can undermine 70 years of developing objective ways to ensure the safety and effectiveness of medicines and accountability of producers to regulatory bodies that enforce purity, safety and ensure that medical claims are accurate and based on science."
There are thousands of families on the waiting list for Charlotte's Web, including the Domers in
Clayton. Cara Domer's daughter, Olivia, has intractable epilepsy.
"We're not saying it's a miracle drug, but we deserve that chance when we failed everything else," Cara Domer said. "We've been to the best doctors in the country, and they tell you there's nothing else we can do."
The Domers were told Olivia will to have until October to access Charlotte's Web, but Cara Domer is planning on moving to Colorado to gain access to the medication.
"I'm in the process of going ahead and getting things lined up there," Cara Domer said. "And when that medication is available, as long as everything's still the same in North Carolina and my daughter, then we will go out."
She said Charlotte's Web could be their last resort.
"These kids are not smoking it, they're not getting high. We're not just giving our kids joints in the corner. It's just extracting part of an oil out of a plant," Cara Domer said.
Dawn Carlin said their options are limited too.
"But how can you not consider something that can potentially save her life?" she asked. "You don't know if this is going to be the seizure that is the one."Copyright WNCN 2014. All rights reserved.RELATED STORIES