Julie Ball

ASH

BREVARD – Janessa Shelton’s daughter was 8 years old before she had a name for the thing that was causing her seizures.

Shelton says her daughter Jacqueline was diagnosed with Dravet syndrome, a rare form of epilepsy that affects young children.

Over the years, Jacqueline, who is now 12, has taken anti-seizure medication and Valium. Shelton also turned to holistic treatments including acupuncture and herbal supplements to help with her daughter’s seizures.

“It’s treatment-resistant by nature. But typically you try rounds of anti-seizure medications. So you exhaust that and then you see if surgery is an option, and surgery is not an option for my daughter,” Shelton said.

Shelton and her husband, Tim Shelton, say they’ve heard of another alternative treatment — one that seemed to provide relief from seizures in some other children. But the treatment is marijuana-based, and the Sheltons say they would have to become refugees from their home in Western North Carolina to gain access to it.

“We have to watch our daughter suffer. She can’t get the treatment that could help her. People in other states, the states with programs in place, the people are receiving it and are being helped,” Tim Shelton said.

News of this potential treatment for children with seizures is renewing discussion about medical marijuana in North Carolina.

Currently 20 states and the District of Columbia permit the use of marijuana for medical purposes, according to the nonprofit Marijuana Policy Project. But in North Carolina, the issue hasn’t had much traction.

During last year’s session of the General Assembly, Rep. Kelly Alexander, D-Mecklenburg, introduced a medical cannabis act that would have permitted medical use of marijuana.

That bill “got all of about 12 minutes consideration at a committee,” Alexander said. It was reported out of the committee as “unfavorable,” which essentially killed the bill.

Alexander also sponsored a separate bill to study “issues related to the medical use of cannabis.” That bill also failed to move forward.

“What’s happened recently as the news media has seriously started taking a look at this and as other states have started adopting changes in the law, you’ve got people who wouldn’t have voted for it or wouldn’t have taken it seriously in the Legislature before who are beginning to at least look at it in ways that are not prejudicial,” Alexander said.

Potential treatment?

Media reports of children gaining relief from seizures using a marijuana-based oil have gotten the attention of some state lawmakers and are giving hope to families like the Sheltons.

CNN highlighted the success of a family in Colorado using a strain of marijuana that is low in tetrahydrocannabinol, or THC, and high in cannabidiol, or CBD, to treat a child. The girl, who suffers from Dravet syndrome, uses an oil made with the strain, and it has reduced the number of seizures, according to media reports.

The reports have prompted some families from North Carolina to move to Colorado to gain access to the treatment.

Ana Watson, of Greensboro, plans to make the move this summer. Like Shelton’s daughter, her son Preston, 12, was also diagnosed with Dravet syndrome.

“Right now, he’s on four different seizures meds, and we’re still having 400-plus seizures a day,” Watson said.

Watson said she’s tried everything.

“When you get to the point where my son is where you’ve basically exhausted all medicine, every treatment, every diet, you have no choice. I feel like we have to try it,” she said.

In March, Rep. Pat McElraft, R-Carteret, announced that she planned to introduce legislation to allow use of CBD oils under specific conditions, according to published reports.

But it’s not clear how much support exists for the idea.

Rep. Chris Whitmire, R-Transylvania, pointed out in an email that families could access a “cannabidiol product” as part of a study by GW Pharmaceuticals. The company plans to begin the second phase of that study “in the second half of 2014,” according to its website.

Dr. Michael Tennison, professor of neurology and pediatrics at UNC Chapel Hill, met with Rep. McElraft about getting North Carolina institutions involved in the study, allowing families here to take part.

“She was anxious for us to be involved or institutions in the state to be involved in the research that would be a way for parents of these children with devastating illnesses to get access to the drug,” Tennison said.

Tennison and Dr. Amy Brooks-Kayal, vice president of the American Epilepsy Society, both stress that research is needed to determine if this is a viable and safe treatment.

“At this point in time, the American Epilepsy Society feels strongly that we don’t have enough information to be regularly using marijuana for the treatment of people with epilepsy of any age, but certainly not children,” Brooks-Kayal said.

The Epilepsy Society says the only information now is “anecdotal reports” and that “robust scientific evidence” is lacking.

“We are encouraged as everyone else is by the sporadic reports of it working for some children, but we also have heard from our members in Colorado that there are many children for whom it does not work and it is a treatment that is not without side effects,” Brooks-Kayal said.

Brooks-Kayal said research is needed to determine which children might benefit from this treatment “to understand how best to use it, how much to give, how often to use it, how long you can use it safely, how it interacts with other medications and very importantly for marijuana products what the effect might be on long-term learning and behavior.”

Previous studies have found use of marijuana among teens has negative effects on learning, Brooks-Kayal said.

“You can be easily faked out by an anecdote that sounds absolutely wonderful only to find that it turns out it was something else that actually made the child better or it’s not going to work in very many people or there’s some serious adverse effects,” Tennison said.

“I’ve seen lots of situations where families thought something was helpful, and it was objectively not,” Tennison said. “As a parent, it’s understandable. You want to see benefit, and if you really, really, really want to see benefit, sometimes you see it and it’s not there.”

Brooks-Kayal said because the compound hasn’t been studied, there’s no way to know if any negative effects will outweigh possible benefits.

“It may be useful in certain children, and even if there are risks, the potential benefits may outweigh those risks. Right now, we don’t know either one,” she said.

Brooks-Kayal said because marijuana is regulated by the federal government as a schedule I controlled substance, restrictions make it difficult to study. Some states are funding research, but “Critical to this whole thing is getting the federal government, particularly the DEA to remove barriers to research in this area,” Brooks-Kayal said.

One in 26 people will have epilepsy during their lifetime, but funding for research lags behind funding for research into other disorders, she said.

Pat Gibson, executive director of the Epilepsy Foundation of North Carolina, said the foundation also wants to see more research into this possible treatment.

“We are so excited to think that there might be anything that can help some of our children that aren’t being helped with what we have today,” she said. “But we want to make sure it’s done the proper way and in a manner that gives us good information so that we do no harm.”

Gibson said existing medications don’t work in about 25 to 30 percent of children.

“I see people trying things all the time, alternative treatments,” she said. “The reason they do that is they are desperate, and their child is not doing well.”

In a statement, the Epilepsy Foundation of North Carolina said as more states legalize medical marijuana, it is important for families “to consult their physician before beginning treatment. Additionally, the foundation feels that comprehensive studies on medical marijuana and CBD are needed to determine safety and efficacy of these substances.”

Dealing with Dravet

Dravet syndrome typically begins in the first year of a child’s life, according to Brooks-Kayal. The seizures are often difficult to treat, and children develop problems with language and learning.

“Children have problems with their movement and balance. They have problems with how they regulate heat in their bodies. These often get progressively worse over time,” she said.

The children also have a higher risk of SUDEP, or sudden unexplained death in epilepsy.

The Sheltons say their daughter has subclinical seizures, without obvious symptoms, “around the clock.”

“When she was 2, I took her to Wake Forest Medical Center and we spent seven days in the hospital. … That’s when I first learned she was having seizure activity around the clock,” Shelton said.

Shelton first heard about the use of marijuana to treat a child in California.

“Over time, I’ve tried to stay connected to online forums with other families whose children have this condition,” she said. “I would like for her to have the option to at least try this.”

The Sheltons say this issue isn’t just about their daughter. They believe other people with ailments that might benefit should also have the chance to try medical marijuana.

“I would like to see patients in North Carolina who have medical conditions that have historically responded to this ... I would like to see those patients be able to have safe access,” Shelton said.

The Sheltons say they’ve thought about leaving for a state like Colorado.

But it would be financially difficult, and they say they don’t want to leave their support system.

“Those families that have moved to Colorado and other states, they can’t travel with their children. They are confined within those borders,” Shelton said.

Shelton has contacted lawmakers to express her support for medical marijuana.

Whitmire said he is following McElraft’s proposal, but “the way to best help these patients is to encourage their treating physicians to publicly state what they recommend as the best medical treatment.”

If that includes a treatment with CBD, “then these physicians must advocate for their patients by taking the trouble to enroll them in a clinical trial. That is the only credible route which establishes the safety and efficacy of drugs, which applies to both pediatric and adult patients.”

Rep. Susan Fisher, D-Buncombe, says medical marijuana bills won’t pass unless they gain Republican support. Fisher was a co-sponsor on the bill introduced last year to study the issue.

“It seems like this may have picked up a little bit of support from the other side of the aisle,” Fisher said.

“Bottom line, that’s what it’s going to take to get anything like this passed in the near term.”

But even if the idea has gained some support, Rep. Chuck McGrady, R-Henderson, said it would be tough to get anything new passed during the short session this year.

“Clearly everybody is saying we’re not going to be in (session) for more than a month or month and a half, and whether we can take up a new topic out of the blue that hasn’t really been vetted and pass it, I just don’t know,” McGrady said.

Alexander plans to try again. He said he will introduce legislation that would allow North Carolina voters to decide whether to change the state constitution to permit medical use of marijuana, including products like the oil used in Colorado.

“At the end of the day, I think that the people deserve a say-so in how we’re gonna change our drug policies. I also believe this is not about whether or not we’ll change them, it’s simply about when we will change them and how we will change them,” Alexander said.