The federal government won't spend money to study it, and leading medical associations won't recommend it, but marijuana has a growing legion of believers in the plant's potential to combat untreatable epilepsy in children.

The shift in public opinion began three years ago in Colorado when news spread on social media that Charlotte Figi, a 5-year-old girl suffering with 50 seizures a day, was making dramatic improvement while taking an oral cannabis extract. The success of that strain named Charlotte’s Web generated international media attention, including two CNN documentaries.

The public attention encouraged the Epilepsy Foundation to speak out. The top leaders of the organization for the 2.5 million people diagnosed with the neurological disorder called on the federal government in February to cease classifying marijuana as a harmful and addictive drug with no medicinal value, so research may be allowed to flourish.

“Nothing should stand in the way of patients gaining access to potentially life-saving treatment,” according to the statement from the foundation’s President and CEO Philip Gattone and Board Director Warren Lammert, both parents of children diagnosed with epilepsy. “If a patient and their healthcare professionals feel that the potential benefits of medical marijuana for uncontrolled epilepsy outweigh the risks, then families need to have that legal option now – not in five years or 10 years.”

There is one FDA-approved clinical trial that began last fall led by renowned pediatric neurologist Orrin Devinsky at Saint Barnabas and NYU. The trial is studying how 125 children are affected by a drug made by GW Pharmaceuticals in the United Kingdom from pure cannabidiol, a non-psychoactive component of the cannabis plant. It is the same active ingredient in Charlotte’s Web.

Physicians and scientists acknowledge their understanding of the complex cannabis plant is limited.

Cannabis has about 500 chemical compounds, but the two most common are Tetrahydrocannabinol, or THC, and Cannabidiol, or CBD.

THC, which gives the user a euphoric "high" feeling, is better understood. THC is recognized for its ability to improve appetite, relieve pain, induce sleep and reduce the effects of spasms. But it is also linked to "acute psychotic episodes, latent mental health problems (e.g. bipolar disorder) and ataxia (a movement disorder)," according to an email from Benjamin Whalley, a neuropharmacology professor at Reading University in England who is collaborating with Devinsky.



"Use during childhood/adolescence has been linked to a permanent reduction in IQ," he added.



The American Academy of Pediatrics opposes marijuana for any medicinal purpose, but it has not issued a position in a decade.



About 25 years ago, researchers discovered that THC interacts with the endocannabinoid system, which is located within receptor cell membranes that regulate mood, pain, appetite and memory.



California pediatric specialist Bonni Goldstein, who has evaluated about 150 children with epilepsy for her state's medical marijuana program, describes the receptor as a lock and the THC as a key, and when they come together, chemical reactions occur that can, for example, reduce pain.



CBD is getting the most attention now for its apparent anti-inflammatory properties. Unlike THC, it doesn't give users "a high," and it appears to work outside of the endocannabinoid system. It is believed that CBD interacts with other "orphan" cell receptors, according to Whalley.



"The leading theory," Devinsky said, is that after CBD is consumed, it changes the activity inside the cell to make seizures less likely. Whalley said CBD appears to reduce the "excitability" inside the cell.



CBD alone cannot control seizures. Even in his high-CBD strains there are small amounts of THC. Matthew Lindsey, operations manager at Realm of Caring, the nonprofit that provides children with Charlotte's Web, said they've heard from some families the combination is essential.



"The THC-CBD combo, many parents are finding out, that it plays a real critical role in helping their child overcome whatever ailment or adult overcome whatever ailment they are facing," Lindsey said.

"That is why research is absolutely so important right now, for us to know why this plant is doing what it is doing. We don't know."



Goldstein, a Cherry Hill native who graduated from the University of Medicine and Dentistry medical school, said she encounters many parents who struggle with the decision to use cannabis.



"For many people it still has the stigma," Goldstein said. "But we can no longer talk about medical marijuana as one thing. There is THC and CBD and they are very different. Most of what people think about marijuana is THC-related."



Meghan Wilson, who moved her family from Scotch Plains to Denver in February so they could buy Charlotte's Web and THC oil for her 3-year-old daughter, Vivian, who has Dravet syndrome, which can be a deadly form of epilepsy, said the controversy surrounding marijuana use in children is not a major concern.



"Vivian's brain was seizing all day long. To talk about the effect of THC on a growing brain when she is having seizures all day long – you can't compare that," Wilson said. "We don't know how long she is going to live, so this is about quality of life."

GLOSSARY

Cannabidiol: (CBD) One of the active compounds in cannabis that does not provide a euphoric high feeling but is valued for its anti-inflammatory properties. (see Charlotte's Web)

Cannabis: the scientific name for marijuana.

Cannabinoids: A group of about 60 compounds in cannabis that interact with specific receptors present located on the surface of cells.

Charlotte's Web: a strain of hemp produced by Realm of Caring, a nonprofit marijuana grower in Colorado. It contains the highest concentration of CBD. Hundreds of children with untreatable epilepsy are using to prevent seizures.



Dravet syndrome: a catastrophic form of epilepsy beginning in infancy, and occurring in 1 in 30,000 births. The disorder interferes with development, movement and balance, growth, sleep and speech. Children with Dravet are at risk of sudden unexplained death in epilepsy. Dravet sufferers usually require lifelong care.

epilepsy: A neurological disorder diagnosed by the occurrence of two or more provoked seizures. Epilepsy can be triggered by illness, brain injury, abnormal brain development and genetic conditions. Some 2.3 million people in the nation are diagnosed with it, including 1 million who live with uncontrolled seizures.

ketogenic diet: a carefully-weighed regimen of food that is high in fat and low in carbohydrates. The diet has been shown to curb seizures. A typical meal includes a small amount of fruit or vegetable, a protein-rich food, and a source of fat such as heavy cream and butter or vegetable oil.



Tetrahydrocannabinol: (THC) One of the primary active ingredients in cannabis that gives the user a euphoric "high" feeling. Recognized for its appetite-improving, pain-relieving, sleep-inducing and spasm-reducing effects, as well as its negative effects on judgment, memory, reaction time and cognition.



Source: Dravet Syndrome Foundation; Epilepsy Foundation; Dr. Orrin Devinsky, director for the NYU and Saint Barnabas Epilepsy Centers; The Charlie Foundation; CannLabs, Realm of Caring.





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