Families move to secure medical marijuana for kids

CINCINNATI -- Two-year-old Addyson flashes a toothy grin, unaffected by her newly busted lip and black eye – injuries from her latest seizures.

"She has bite marks all up and down her arms," says Heather Benton of her blue-eyed toddler, who has hundreds of seizures a day. "We think she's weaning from Onfi, her last medication that didn't work."

The Bentons are among a growing number of families in the U.S. who are uprooting their lives for the chance to help their children with a drug that might work: medical marijuana.

In December, Addyson's father, Adam Benton, became an official resident of Colorado, one of 20 states where medical cannabis is legal. Addyson is on a waiting list for a strain grown there known as Charlotte's Web. It's named after a 7-year-old who, when given the cannabis strain in an oil form, saw her seizures drastically reduced.

The Bentons will move as soon as Addyson comes off the waiting list, which they hope will be October – leaving behind the home in Liberty Township, Ohio, that they built less than a year ago and the friends and family who have supported them.

"It's so sad to know that Addyson won't be able to see her family because there is just such a lack of understanding about medical marijuana in our government here," said Heather Benton. "Not one part of me is afraid to give Addyson medical marijuana, but I'm terrified to keep giving her the medications she's been prescribed, that haven't worked and have all these horrible side effects."

The federal government considers marijuana a Schedule I drug, listing it among the "most dangerous" substances, alongside heroin, LSD and methamphetamine.

The classification places enormous restrictions on scientists, medical experts and pharmaceutical companies that make in-depth research and clinical trials on the drug "nearly impossible," says Dr. Amy Brooks-Kayal, vice president of the American Epilepsy Society, which supports medical cannabis research.

"We have a great need for new therapies in epilepsy, but the challenge (with medical marijuana) is that all we have is anecdotal evidence," said Brooks-Kayal, who is also a Colorado-based neurologist.

The limited research that has been done shows that marijuana can aid several conditions.

"It works well for anxiety. It works for glaucoma. People who have tremendous weight loss, it helps with appetite," said Dr. Judith Feinberg, associate chairwoman for the Department of Internal Medicine at the University of Cincinnati's College of Medicine. In 1999, she was among experts tapped by the Institute of Medicine to study existing data on medicinal benefits of marijuana.

Legalizing marijuana in states where it is banned, Feinberg said, may not equate to new research for groundbreaking drugs. That's because getting new drugs approved by the FDA often first requires the interest of pharmaceutical firms, ready to spend big on research for drugs they deem will win them a profit.

"Even now that it's legal in a number of states, there doesn't seem to be a drug company that sees it's worthwhile," Feinberg said. "There doesn't seem to be enough profit margin."

Stories like Addyson's hit home with Scott Nazzarine of Cincinnati.

His 5-year-old daughter, Sophia, has had two brain surgeries. Like Addyson, she takes medications for the seizures she suffers almost weekly.

"I have clients who are abusing the same medicines my 5-year-old is taking," said Nazzarine, a lawyer in Hamilton County's Public Defender's Office. "That's terrifying to me that she's taking drugs that are so heavy, some people want to buy them on the street."

He, too, has considered the move to Colorado, but he hasn't progressed as far as the Bentons.

"I would bet my life that any negative effects from ingesting a small amount of medical-grade marijuana would be less harmful than the seizures my daughter continues to have despite every accepted cure we've tried," said Nazzarine.

For now, he's hoping Ohio legislators will be spurred to action by stories like Sophia's and Addyson's. "I can't imagine the governor or state representatives' hearing her story and thinking, 'No, we're just going to ignore this,' " he said.

While Nazzarine also supports a petition drive to put a medical marijuana referendum on Ohio's fall ballot, he believes "it would be a lot easier if the Legislature would just do it, instead of making people get hundreds of thousands of signatures and spend all this money to make it happen."

The Bentons are less optimistic about the ballot initiative or the possibility that the Legislature might act.

"We've sent letters to every single representative, asking for their support," said Adam Benton. "They don't know what it's like to constantly check in on your child at night, not knowing if she is still going to be breathing because she just had a seizure. If it doesn't affect them personally, they don't care."

Addyson was just 8 months old when she had her first seizure. By 14 months, she was diagnosed with myoclonic epilepsy, a potentially fatal condition should her seizures become uncontrollable. Her latest prescription, Depakote, carries the risk of liver failure.

The Bentons admit that what they know about Charlotte's Web is limited to their own research, support groups and media reports about the Realm of Caring. That's the Colorado Springs-based group whose founders produce Charlotte's Web, a strain of medical marijuana that is high in cannabidiol, also known as CBD. It's a chemical in cannabis thought to have medicinal properties. The marijuana strain is also low in tetrahydrocannabinol, or THC, which is the chemical that makes users high. More than 180 epileptic children have begun treatment with Charlotte's Web, according to the Realm of Caring.

In December, the Bentons visited the greenhouse and received the sign-offs they needed from two Colorado-based physicians for Addyson's prescription. The drug is in such high demand, though, that the Realm of Caring has started a waiting list. By October, a new harvest is expected to be ready that's being grown exclusively for patients like Addyson.

"When we first heard about Charlotte's Web, we brushed it off, like so many people do," said Heather Benton. "But then we began researching, and hearing the stories; we were sold. Our doctors here who are seeing kids that have failed all these other medications should be telling families that there may be another option."

The American Medical Association opposes legalizing the sale of marijuana, calling cannabis a "public health concern."

As media reports about Charlotte's Web have increased, however, doctors and neurologists are getting more questions from patients about the drug's potential.

"We get hit with this question all of the time," said Dr. Bassel Shneker, an associate professor of neurology and professor of pharmacy at Ohio State University.

Dr. Michael Privitera, director of the Epilepsy Center at the University of Cincinnati Neuroscience Institute, said he tells patients and their families seeking medical marijuana that "we don't know the long-term side effects, and we don't know what the drug interactions are like."

In Colorado, Brooks-Kayal says no neurologists are prescribing Charlotte's Web, though they will continue to treat patients taking the drug.

"We still absolutely want to provide the best care for both adults and children with epilepsy," she said. "We let the families know our concerns and why we don't prescribe, but certainly if they chose to use a marijuana derivative we continue to treat them."

Privitera, who also serves as the second vice president of the American Epilepsy Society, added: "We know some people have used marijuana and their seizures have improved, but others have also taken it and haven't seen their seizures get better.

"We need to understand this compound better, and that's going to require comprehensive research and studies."