April 30, 2014 --The first time Dana gave marijuana to her 13-year-old son, it was a mother's act of desperation.
Edward has absence seizures, also known as petit mal seizures. At least a dozen times a day, he blanks out for about 20 seconds. The seizures affect his school work and memory. His mother lives in constant fear that he'll fall down a flight of stairs or step into traffic while he's having one.
And like one-third of all people with epilepsy, medication does little to control his seizures. When Dana heard news reports about a strain of marijuana grown in her home state of Colorado that helped reduce seizures in some children, she was intrigued. For close to 4 months, Edward took medical marijuana pills. They were low in THC, the ingredient in marijuana that affects mood, but high in cannabidiol (CBDs), a non-mood-altering ingredient in pot. Supporters of CBD marijuana say it shows promise against epilepsy, but far from everyone agrees.
"We saw absolutely nothing, nothing positive or negative, just as if we were giving him a vitamin," says Dana, of Golden, CO, who asked that her last name not be used. Both medical and recreational marijuana are legal in Colorado. "It was definitely a letdown that we weren't seeing the effects that other people said they had seen early on. We had high hopes and nothing was happening."
At a time when hundreds of families have moved or are planning to move to Colorado in search of this treatment, such stories are a sobering reminder of the difficulty of controlling drug-resistant epilepsy.
Estimates of the effectiveness of CBDs vary widely. While supporters in Colorado say 3 out of 4 patients have seen some benefits, some epilepsy specialists believe just 1 in 4 patients sees any improvement. Neither estimate is based on hard evidence. There has been little scientific testing of CBDs. Understanding of their impact is further hampered by reluctance among patients' families to reveal that they've tried it and among most doctors to recommend it.
For those who move to Colorado and see no success, it can be heartbreaking.
"Everybody comes with a certain level of hope, of course. That's why they're here," says Heather Jackson. She is the director of Realm of Caring, a nonprofit that helps families relocate to Colorado and get access to Charlotte's Web, the type of medical marijuana developed for children with seizures.
"I think that is discouraging, but everybody is also realistic. These are families that have really been through the wringer. I'm sure they had hope for every remedy they've tried," Jackson says. "We're very upfront when folks get started and explain to them that this doesn't work for everybody."
A Cautionary Tale
More than 2.7 million Americans live with epilepsy. Many lead normal lives with the help of certain diets, surgery, or medication. After a diagnosis, a doctor will usually prescribe one drug, then another if it doesn't work.
Among people who can't control their seizures after trying three drugs, fewer than 1% will ever see a reduction in seizures from them, research shows. This includes 20% to 40% of those with epilepsy.
The consequences of uncontrolled childhood epilepsy can be dire. Seizures can delay or hinder brain development, leaving a person impaired for life. It can diminish success in school and lead to loneliness and isolation. Sudden unexplained death is 40 times more likely among people who continue to have seizures compared to those who are seizure-free.
Aiden, 8, has been on 17 different medications. He has a pacemaker-like device implanted near his collarbone to control the electrical impulses from the brain that cause seizures.
Nothing has worked to control the 300 grand mal seizures a month, caused by a rare form of epilepsy known as Dravet syndrome. He is developmentally disabled and has trouble walking or talking, says his mother, Nicole, of Castle Rock, CO.
Nicole tried high-CBD marijuana for Aiden, but his seizures increased. He began vomiting. After 11 months, she gave up.
"I've seen it working for other kids. I'm so glad we tried it. I'm so glad we live in a legal state and we had the opportunity to try it," says Nicole, who also asked that her last name not be used. "It didn't work for him, but it wasn't worse than any of the other meds he was on."
She sees her story as a cautionary tale for other desperate families willing to move to Colorado for a miracle cure.
"If they're coming out thinking it's going to be a miracle treatment that's going to fix their children or make their wheelchair-bound child walk, I would say, ‘Hold on.'"
Risk Is Worth It
The stories of other children whose seizures have improved have been retold across the media. Several parents who moved to Colorado for medical marijuana told WebMD earlier this year that the drug had drastically reduced their children's seizures. Also, among those helped is Jackson's son, Zaki. He has been seizure-free for 18 months taking Charlotte's Web.
Jackson says Realm of Caring has helped more than 100 families from 43 states move to Colorado for the treatment.
Thanks to increased growing capacity, the organization expects marijuana producers to be able to provide Charlotte's Web to the 1,000 patients from around the world now on a waiting list, beginning with the October harvest.
Margaret Gedde, MD, PhD, specializes in medical marijuana referrals and works with Realm of Caring. She says of the first 50 patients, 25% have had dramatic seizure reductions. Another 50% have had "some success." This may include minor seizure reduction, improved appetite or mental abilities, or being able to wean off other medications.
The remaining 25%, she says, saw no improvement, and in some cases the seizures got worse.
Patients who are sensitive to medications, who have been on medications for a long time, or have liver damage are more likely to not respond to CBDs, she says.
"I'm heartened that, in the looks that I have, the majority of the kids seem to get a benefit, as incomplete as that may be," she says.
Searching for Answers
There are 275 minors on Colorado's medical marijuana registry. None of those referrals came from epilepsy specialists. Only a handful of doctors in Colorado are willing to prescribe marijuana, especially for children.
"I base my recommendations on science, and there's no literature recommending this," says Kelly Knupp, MD. She's a pediatric epilepsy specialist at Children's Hospital Colorado. "I had heard the reports. It is not the experience we're seeing here at Children's Hospital."
It's a sentiment echoed by other epilepsy specialists in Colorado, who believe only 1 in 4 patients is seeing any seizure reduction, based on talks with families who have acknowledged trying the therapy.
"We don't feel like right now we have the information to know if it's going to be effective and what the safety profile is, so we cannot encourage families to make that choice, and we try to educate them about our concerns," says Amy Brooks-Kayal, MD. She's a University of Colorado epilepsy specialist and vice president of the American Epilepsy Society.
Doctors are also hampered by the reluctance of parents to reveal they gave their kids marijuana, and the fact that if children are having success, their parents might not visit an epilepsy expert at all.
Brooks-Kayal, along with many other epilepsy specialists, would like to see the federal government remove some of the red tape that hinders marijuana research.
She is also concerned about the impact of marijuana on kids' developing brains.
Denver's Edward Maa, MD, shares the skepticism of other epilepsy specialists. But he sees enough promise in CBDs that he is working with the Realm of Caring to try to answer the big question of why it works for some children and not others.
In an upcoming study, patients on Charlotte's Web will be asked to provide a saliva sample, which will be genetically analyzed by a private lab. Maa hopes it will reveal genetic reasons why some patients respond to CBDs.
He understands why parents are willing to try CBDs, despite the lack of scientific data.
"These syndromes these kids have, and frankly many adults that I treat have, [they're] so devastating, so why not?" he says. "If it weren't a byproduct of marijuana, I don't think anybody would be having any consternation at all."
Dana, Edward's mother, took him off Charlotte's Web in March after levels of the anti-seizure medicine Depakote in his bloodstream spiked. Doctors believed it was interacting with the marijuana.
He still has absence seizures, though they are steady at about a dozen, down from a high of 60 to 70. He is able to live a "pretty normal life," she says.
She knew going in that the marijuana treatment was untested, but she was "cautiously optimistic."
"I have absolutely no regrets at all. I feel like Charlotte's Web, whether it works or doesn't work, has put epilepsy back out of in front of the public, and I think it's a great thing people are talking about it."
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