Frequently asked questions about cannabidiol (CBD) and children with epilepsy

(NOTE: The Epilepsy Foundation of Colorado is providing this information as a public service, but we do not make treatment recommendations. Treatment decisions should be made by patients, family members, and physicians based on a careful consideration of each individual case. The Epilepsy Foundation of Colorado is not affiliated with the entities involved in producing or marketing CBD-based medications.)

What is the medical marijuana product known as Charlotte’s Web?

Charlotte’s Web is a medication made from cannabis plants and administered in liquid form. Its popular name refers to Charlotte Figi, the child with Dravet syndrome whose seizures stopped after she began taking this medication. It is grown in Colorado by the Stanley brothers and sold at their Colorado Springs dispensary.

Does Charlotte’s Web give children a “high” as is the typical result with other forms of medical marijuana?

No, because Charlotte’s Web has a low level of THC, the psychoactive component of marijuana that makes users high.

Is medical marijuana legal for children?

Yes. In Colorado, marijuana-related products may be obtained for children with the approval of two doctors (as opposed to one doctor for adults). Presumably it would be difficult to get two doctors’ approval for a young child to take a form of marijuana that is high in THC.

Are there medical marijuana treatments available for children with epilepsy other than Charlotte’s Web?

Yes. GW Pharmaceuticals, a British company, has developed a medication called Epidiolex, also taken in liquid form. It is high in CBD and contains no detectable THC. GW Pharmaceuticals has obtained permission from the Food and Drug Administration to make Epidiolex available as an Investigational New Drug (IND) by application from physicians wishing to prescribe it. Currently about a dozen physicians across the United States have submitted such IND applications to the FDA; none are in Colorado. GW Pharmaceuticals plans to conduct clinical trials using Epidiolex later this year.

What are the statistics pertaining to success in controlling seizures in children using this or any form of medical marijuana?

At this point the only data are anecdotal. The Realm of Caring Foundation, which is affiliated with the Stanleys’ operation, has reported that 85 percent of the initial cohort of children experienced a reduction in seizures of 50 percent or more. Margaret Gedde, MD, who has seen in her clinical practice many of the children taking Charlotte’s Web, estimates that overall one-quarter of children with epilepsy have had dramatic improvement after taking Charlotte’s Web and about another 50 percent have had some improvement. Doctors in Colorado and at Stanford University have documented case reports (see the links to their medical reports on our “For More Information” page). However, no rigorous clinical trials have been conducted yet.

Under what circumstances might this treatment be considered?

Given the lack of rigorous medical evidence at this point, the use of Charlotte’s Web and Epidiolex by children with epilepsy has been limited to severe, intractable cases that did not respond to other, more established medications.

Is Charlotte’s Web available from growers and dispensaries other than in Colorado Springs?

Charlotte’s Web is a proprietary product, currently available only in Colorado Springs and through a licensee in California. Other growers and dispensaries may claim to offer forms of marijuana that are high in CBD and low in THC. However, dispensaries receive no state or FDA oversight of their products and have no requirement to test their medications. The Stanley brothers have used both in-house and third-party testing processes in an attempt to ensure that Charlotte’s Web has consistent chemical content. Persons obtaining marijuana-related medications from other sources can have the product tested by a laboratory at their own expense if it has not been tested already.

Does medical insurance cover CBD-based medications as a treatment for children with epilepsy?

Not yet. As a result, families can expect to pay for the medication themselves. The cost of Charlotte’s Web ranges from $100 to $600 per month, depending on dosage level and patient weight. Some families with financial need receive discounts from the Stanleys’ dispensary. GW Pharmaceuticals is currently providing Epidiolex at no cost for patients in INDs and forthcoming clinical trials. If the efficacy of these medications could be documented in clinical trials, they could become eligible for insurance coverage in the future. Although the Drug Enforcement Administration currently classifies marijuana as a Schedule I controlled substance (which means that it has no currently accepted medical use in the United States), Marinol, a drug prescribed for side effects of chemotherapy that contains THC, is classified separately as Schedule III. GW Pharmaceuticals hopes that Epidiolex would be similarly reclassified if the FDA approves its use following clinical trials. The Stanleys are also pursuing development of clinical trials for Charlotte’s Web.

What are the known side effects of Charlotte’s Web or medical marijuana generally in children?

No problematic short-term side effects have been reported. Long-term effects are an open question. Marijuana use in children has been shown to have negative effects on the brain, but we do not know whether medications containing little or no THC will have any long-term side effects.

If Charlotte’s Web is legal in Colorado, and if 19 other states have medical marijuana laws, why are people moving to Colorado from all over the country to obtain it?

Federal law prohibits transporting marijuana across state lines, so Charlotte’s Web cannot be sent to other states. Thus it is available only in Colorado (and more recently in California as noted above).

How can we place our child on the waiting list for Charlotte’s Web?

Contact the Realm of Caring Foundation (website: http://theroc.us) at (888) 995-8437 or info@realmofcaringfoundation.org.

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