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CANNABIS FOR LENNOX-GASTAUT SYNDROME

CBD, CANNABIDIOL, CANNABIS AND MARIJUANA FAQs: 

What is Cannabis?

Cannabis is the general term for the plant Cannabis sativa. Cannabis contains about 500 different chemicals, including the cannabinoids THC and CBD.

What is Marijuana?

Marijuana is a dried mixture of cannabis leaves and flowers. Medical Marijuana is the use of marijuana for medical purposes. Recreational marijuana is the use of marijuana to induce pleasure.

 

What is Hemp?

Hemp comes from certain types of the Cannabis sativa plant and is grown from the stalks and seeds, not the flowers and leaves as marijuana is. Hemp contains minimal amounts of THC and some CBD.

What's the difference between Hemp and Marijuana?

Industrial Hemp and Marijuana are the same plants, but they have a drastically different genetic profile. Hemp plants are very fibrous, with long strong stalks, and barely has any flowering buds, and this has low levels of THC. Cannabis plants, which are dried down to make marijuana, has lots of flowers and leaves, and very high THC levels.

What is CBD?

CBD (cannabidiol) is one of over 500 naturally occurring chemicals found in cannabis. CBD is a cannabinoid (a type of chemical or molecule). It can be taken out of the plant or be manmade (synthetic CBD). CBD has been shown to have antiseizure effects and is does not produce a “high.”

 

What’s a cannabinoid?

Cannabinoids are a type of molecule found in the cannabis plant that that react with cannabinoid receptors in the brain.

 

What is THC?

THIS is one of over 500 naturally occurring chemicals, and one of ~100 cannabinoids, found in cannabis. It can be taken out of the plant or manmade (synthetic THC). THC is the main chemical that gets produces a “high.”

 

What is cannabis oil?

Cannabis oil is extracted from flowers of the cannabis plant and often contains high levels of THC, which will produce a high.

 

What is CBD oil?

CBD oil is CBD taken from the flowers of the hemp plant and then dissolved in oil (like sesame oil or coconut oil). CBD oil typically does not contain THC (less than 0.3%) and does not produce a high.

 

Charlotte’s Web, an extract made from cannabis plants and administered in liquid form, is one of the most well-known CBD oils. Its popular name refers to Charlotte a child with Dravet syndrome whose seizures decreased after she began taking this product. Charlotte’s Web does not produce a high. Its THC level is so low (0.3% or less) that the Colorado Department of Agriculture has classified Charlotte’s Web as hemp rather than marijuana, making it eligible to be transported across state lines under federal law.

 

Many other types of CBD oil exist and gels and patches have also been produced.

 

Is CBD legal?

It’s complicated. CBD is legal under some state laws but not federal law.

Is CBD effective in LGS?

A clinical trial (the standard used to determine if medicines work and are safe) led by Orrin Devinsky of New York University was recently done in children LGS who received Epidiolex, a medication containing CBD.

 

47% of these patients had at least a 50% seizure reduction at three months and 9% were seizure-free. 16% of patients stopped treatment because it wasn’t working or the side effects were not tolerable.  

Researchers at Children’s Hospital Colorado found that 33% of 75 pediatric epilepsy patients using a CBD-related treatment experienced at least a 50% seizure reduction.

Dr. Margaret Gedde, who has followed hundreds of children with epilepsy using CBD-related treatments, reported in an observational study (not independently verified) that 60% achieved a seizure reduction of 50% or more.
 

Are all CBD products basically the same?

No. The medicine Epidiolex is refined to eliminate the psychoactive THC completely. Other products on the market have low levels of THC and varying amounts of CBD and other chemicals. Knowing what is in a product a person is taking is very important.

Under what circumstances might CBD be considered?

Only a treating doctor can answer this question for the person in their care. Any child taking cannabis-related products should be closely monitored by a physician and knowing what exactly is in the product is very important.

What are the known side effects of CBD or other cannabis-related products generally?

The most commonly reported side effects have been drowsiness, diarrhea, and decreased appetite. Increased seizures and convulsions have occurred in a small number of cases. Long-term effects are unknown. Marijuana use in children has been shown to have negative effects on the brain, but we do not know whether treatments containing little or no THC will have any long-term side effects.

How do I know what is actually in the product? 
That can be a challenge for non-pharmaceutical-grade medical marijuana as no FDA testing or oversight is required for non-pharmaceutical CBD products. The FDA has issued warning letters to some producers after testing their products and finding that they did not contain the CBD claimed on the label. Some states require testing of medical marijuana products for THC, but not for CBD. Some product sellers use in-house and third-party testing processes in an attempt to ensure that their products have consistent chemical content and don’t contain any toxic substances. Anyone considering the use of cannabis-related products should make sure that they are comfortable with the product’s quality and whether or not they can consistently get it again and again.

 

NOTE: The LGS Foundation provides this information as a public service, but we do not make treatment recommendations. Treatment decisions should be made by patients and family members based on appropriate consultation with physicians and careful consideration of each individual case.

Journal Articles: 
American Epilepsy Society Press Releases on Medical Marijuana:
AES Annual Meeting Abstracts: 
American Academy of Neurology Press Releases on Medical Marijuana:
Glossary:

LGS Position statement on cannabis:

Lennox-Gastaut Syndrome (LGS) is a rare and severe form of childhood-onset epilepsy that frequently persists into adulthood. Patients with LGS typically suffer from frequent seizures of multiple types and moderate to severe cognitive impairment. Treatment options for LGS are somewhat limited and many patients do not respond well to currently available medications. The LGS Foundation feels that all patients living with Lennox-Gastaut Syndrome should have access to therapies and treatments that have the potential to reduce seizures and improve quality of life.

In light of significant media coverage of medical marijuana / cannabis for the treatment of epilepsy, there has been growing interest among families and physicians for CBD (cannabidiol), a non-psychoactive component of the marijuana plant.  The LGS Foundation continues to learn about experiences (some successful, some unsuccessful) of LGS patients using medical marijuana, specifically CBD, as a treatment option.  As more and more U.S. states pass legislation allowing patients to legally access medical marijuana, we feel that it is important for families to consult their physician before beginning treatment.   Additionally, the LGS Foundation strongly believes that comprehensive studies on medical marijuana and CBD are needed to determine the safety and efficacy of these substances in patients with epilepsy. The LGS Foundation welcomes research proposals that will help accelerate the discovery and understanding of therapies such as CBD for LGS patients.  To learn more, visit www.lgsfoundation.org/research.