https://www.yahoo.com/health/why-parents-of-children-with-epilepsy-are-104174561217.html
Why Parents of Children with Epilepsy Are Increasingly Turning to Marijuana
Its more about desperation, than the desire to be rebellious.
When Bonni Goldstein, MD, medical director of Canna-Centers, a group of medical marijuana practices in California, prescribes cannabidiol a compound extracted from marijuana to children with epilepsy, she always clarifies to their parents that the long-term risks of the compound are unknown. It wasnt available 30 years ago, she explains. Yet, every single parent has said to me, Well, I dont know the long-term effects of the medications my child is taking, and the seizures havent stopped. Id like to give my child the best chance possible.
Without fail, they accept the cannabidiol, or CBD. In fact, many have come to Goldstein specifically for the drug, knowing already, through Internet forums, that the marijuana extract could equal hope for their sick child.
To many of these people, its just another medication to try, says Goldstein.
A number of her pediatric patients are non-responders that is, theyre among the roughly one-third of people with epilepsy for whom conventional medications dont work. The meds may reduce the frequency or severity of seizures, but fail to eliminate them entirely; some children dont respond to the drugs, period. Whats driving people is the option of another medication, even if its not been thoroughly researched, she says. With epilepsy, its very difficult, especially when a child is involved, to live a normal life. Seizures are unpredictable. Imagine being in Target with your child, and your child drops to the floor. Imagine getting a call from school that your child is seizing.
For Ray Mirzabegian, director of the nonprofit Realm of Caring California, the decision to seek out CBD was an obvious one. Just a couple years ago, his 10-year-old daughter, Emily, was taking four different anti-seizure medications. Unfortunately, that causes a vegetative state, he tells Yahoo Health. Shed tried a total of 13 medications, and none effectively controlled her epilepsy: At her worst, she was having 120 seizures a day, at best, 40 to 45 a month. At that point, [doctors] start retrying some of the medications that failed, hoping to create a cocktail of several drugs that would work, says Mirzabegian. We decided thats not the route to go.
A couple of years ago, Emily Mirzabegian was taking multiple medications in an attempt to decrease seizures from epilepsy.
As with Mirzabegian, its often desperation not rebellion against convention that pushes parents to seek medical marijuana for their children. Its hope that drives them to scour the Internet, searching for any shred of information that may provide relief, even though public opinion is largely against them. Goldstein has seen families move across the country to California just to seek CBD for their children, since marijuana is still a Schedule 1 drug that is, with no currently accepted medical use and a high potential for abuse under federal law. (Medical marijuana has been legal in California since 1996.)
Around 2011, recalls Goldstein, cannabis-testing labs became more widespread. This enabled doctors, growers, and patients to determine exactly how much THC (the psychoactive component of marijuana) and CBD (the proposed anti-seizure element) are found in different strains of the drug. As a result, Goldstein says shes seen a significant uptick in the number of parents seeking medical marijuana for their children with epilepsy a trend likely accelerated by the 2013 CNN documentary WEED, which made Charlottes Web, a strain of marijuana used to treat epilepsy, a household name among parents of seizure-stricken children.
Charlottes Web is high in CBD and low in THC, says Goldstein. Someone looking to get high would be disappointed by its effects. According to a report in the journal Epilepsia, Charlotte, the little girl for whom the strain was named, has been weaned from all other antiepileptic drugs after 20 months of effective treatment with Charlottes Web. Similar varieties of CBD-rich marijuana available in California include ACDC, Harlequin, and Cannatonic. CBD is taken as an oil under the tongue or swallowed, Goldstein says. Its not smoked.
Since the documentarys release, an increasing number of parents have gone public, admitting that their children with epilepsy are being treated with CBD. Just last week, a Eugene, Oregon, family shared their success story with a local news station, KATU, saying they resorted to CBD oil after their young son became suicidal what they believe was a side effect of his anti-seizure medications. I have my son again. Hes not this fog of a child. Hes not this angry child. Hes my child exactly, the boys mother, Tanesha Smelser, told KATU. Like Charlottes Web, the oil that her son is taking is low in THC less than 1 percent and high in CBD.
It was this CNN documentary that prompted Mirzabegians first visit to Colorado just three days after he saw it where he met with the Stanley brothers, the growers who produce Charlottes Web. I couldnt bring anything back, because its illegal to transfer the product between state lines, he says. But he did return to California educated about the potential benefits of CBD, prompting him to buy any CBD-rich product he could find in his state. Two-and-a-half years ago, a lot of the dispensaries didnt know what CBD was, he says. We bought a lot of stuff and all of them failed. (Later testing revealed that the products hed purchased didnt truly contain CBD.)
Thats when Mirzabegian started a Facebook page, The Pediatric Cannabis Group of California, dedicated to bringing Charlottes Web to children with epilepsy in his home state. Within a few months, hundreds of parents had joined and with the help of the Stanley brothers, Mirzabegian was able to open the California chapter of their non-profit, Realm of Caring, in August 2013.
Its not just in the United States that parents are becoming desperate. I have a family who is actually coming to see me from Europe, because they cant find any relief for their childs seizures, says Goldstein. In Chile, a group of about 100 parents have banded together, creating a group called Mama Cultiva, or Mama Grows, designed to share information about cultivating marijuana and extracting cannabis oil to treat their children with epilepsy. Many grow marijuana in their own backyards, even though they could be imprisoned for up to 15 years for doing so.
To many in the medical community, these parents are relying, at best, on shaky science. A 2013 Cochrane review of studies examining CBD as a treatment for epilepsy concluded that, due to the dearth of large, high-quality studies, the safety of long-term cannibidiol treatment cannot be reliably assessed.
All we can say is that it appears to be safe for short periods of time, David Gloss, MD, a neurologist and co-author of the Cochrane review, tells Yahoo Health. You have to remember this is new we do not have long-term studies, adds Goldstein. There are a couple kids in Colorado that have been on it for over two years and have had no negative side effects. In a recent Epilepsy & Behavior study, the only side effects of CBD that parents reported in their children were drowsiness, fatigue, and a decrease in appetite; none reported psychoactive effects.
However, as Orrin Devinsky, MD, a professor of neurology at NYU, tells Yahoo Health, we dont fully understand the safety of medical marijuana for children. Even so, he does believe theres enough data to permit compassionate use in children with epilepsy that cant be controlled through available medications and diet.
The anecdotal outcomes have been undeniably impressive: In a 2013 survey of parents who belong to a Facebook group devoted to sharing information about CBD for epilepsy, published in Epilepsy & Behavior, 84 percent reported a reduction in their childs frequency of seizures while taking the drug. And 11 percent said the seizures disappeared entirely.
Since Emily, the daughter of Mirzabegian, started taking CBD, her frequency of seizures has decreased dramatically to about four per month. Its allowed us to bring her off meds, and that alone has brought so much of her back behavior, cognition, speech, learning ability, everything, her father says. And there are cases even better than ours. I have patients in San Diego now, several of them, who have been seizure-free for eight, nine months.
Ray Mirzabegian and his daughter Emily; the number of seizures she experiences has decreased since she began taking CBD.
Its stories like this that continue to compel parents to relocate their families to California and Colorado. Families ask, Given the dramatic responses documented in the media, how could any reasonable physician deny access to [medical marijuana]? Devinsky wrote in a recent commentary in Epilepsia. The problem is, theres a lack of clarity about how, exactly, CBD might stave off seizures, although a handful of potential mechanisms have been identified, says Gloss. Theres a whole list of potential targets they may all work together, or it may be one of them in particular, he says. We dont really know.
What is clear: Animal studies have shown that CBD works as an anticonvulsant, giving patients and providers hope that a new drug is on the horizon. In fact, GW Pharmaceuticals is currently investigating Epidiolex, a purified form of CBD, as a treatment for Dravet syndrome, a rare form of epilepsy that begins in infancy (the type that both Charlotte and Emily suffer from).
Until the FDA approves a CBD-derived drug, Gloss says he cant make a judgment. There have been case reports of people who started taking marijuana and their seizures went away maybe for those children, there is something there. However, he cautions, these parents are skirting the methods of conventional medicine. This isnt how we typically prescribe medicine in the United States, says Gloss. We do things by trials, we see that things are safe, and then they become approved by the FDA. Do the benefits outweigh the risk? Right now we dont know. The data is not out there for [CBD] to be used outside of a research trial.
Theres certainly not enough research, concedes Goldstein. But you have to remember, some of these kids are having hundreds of seizures a day. Any parent would pick up and move for their child if they heard something might work and actually has some scientific basis. People have this vision of medical marijuana as someone sitting and smoking a joint. That is no longer what this is about.
Its not just the lack of research thats creating a roadblock for parents its also the legality of CBD. About six months ago, Mirzabegian opened a California clinic strictly offering Charlottes Web, along with training and seminars for parents. Nine days later, it got shut down, even though the state issued us a license that cost us three grand, he says. The solution: Hes currently working with an existing dispensary to distribute Charlottes Web a set-up he considers less than ideal. Dispensaries do not allow minors to come in, he says. So I have to tell the parents, Look, you need to keep your children in the car. What if the little kid wants to use the restroom? Its just embarrassing it sucks.
In California alone, the waiting list for Charlottes Web is between 1,200 and 1,300 people. Nationwide, its 14,000 probably, Mirzabegian says. However, hes hopeful that 2015 will be the year hes finally able to help these thousands of other parents, currently unable to access Charlottes Web due to federal laws against shipping CBD across state lines. The Charlottes Web Medical Hemp Act of 2014, introduced by U.S. Rep. Scott Perry, R-PA, is due for Congressional review, and if passed, would allow nationwide shipment of CBD products that contain little to no THC.
In addition to tackling the legal side of the CBD issue, Realm of Caring is also working to facilitate real research. We as a foundation are part of clinical trials right now whoever is coming off the waiting list is part of clinical trial data collection, Mirzabegian says. I need the scientific community to buy into this and believe us. We have hundreds of people using CBD now, and theyre reporting data. And the medical community doesnt like this data they say, Oh, its anecdotal evidence. Anecdotal evidence is so underrated its evidence from human beings.