- Last Updated on 08 August 2014
The Infantile Spasms Project, in coordination with UCLA Pediatric Neurology, is conducting a survey to better understand the experiences of children with epilepsy—and especially infantile spasms—who have tried a medical marijuana product. If you are the parent of a child who has tried cannabis, CBD, THCa, or other products, we would value your input in our survey:
With recent legislation across the United States, there has been renewed interest in the therapeutic potential of marijuana (cannabis) for myriad conditions including epilepsy, and even infantile spasms. To a limited extent, this has been inspired by small studies in animals suggesting that cannabis may have anti-seizure properties, and early results of a recent open-label study exploring the effectiveness and safety of purified cannabidiol (CBD) for treatment of children with severe forms of epilepsy. The overwhelming source of enthusiasm has been from online parent testimonials and press reports of success in individual patients. However, like many "alternative" therapies which are outside mainstream medicine, there is limited scientific support for the use of cannabis to treat epilepsy. Although the internet is replete with testimonials extolling the virtue of medical marijuana, there is insufficient evidence—and especially safety data—to recommend its use for treatment of seizures in most cases. Please see our discussion of "Treatment X". However, for patients who have not responded to first-line mainstream therapies, and for whom the potential benefit and risks of ongoing seizures/spasms outweigh the largely unknown risks of marijuana therapy, a marijuana preparation may be a reasonable treatment. This should take place only after a candid and thorough conversation with a neurologist who is familiar with these therapies and associated risk.
It is particularly dangerous to try these therapies without informing your child's physicians, especially those who prescribe other drugs. Most readily available formulations of medical marijuana contain numerous—nearly 100—chemicals derived from the plant, many of which may interact with mainstream medications. Potential drug-interactions between cannabis and traditional anti-seizure medications are largely unknown. Particular caution should be exercised when giving marijuana products together with benzodiazepines, including clobazam (Onfi®, Frisium®), clonazepam (Klonopin®) and others, as well as felbamate (Felbatol®), valproate (Depakote®), carbamazepine (Tegretol®), oxcarbazepine (Trileptal®), perampanel (Fycompa®), prednisolone, primidone (Mysoline®), rufinamide (Banzel®), stiripentol (Diacomit®), tiagabine (Gabatril®), and zonisamide (Zonegran®).
In most countries, including the United States, there are many indirect and legal risks that accompany the use of marijuana preparations obtained in the community without oversight by regulatory agencies such as the Food and Drug Administration (FDA) and Drug Enforcement Agency (DEA). In the United States, although medicinal and recreational marijuana use is legal in many states, marijuana continues to be classified as a schedule I controlled substance and is illegal according to federal law. Therefore, children, parents, "prescribing" physicians, and "manufacturers" (growers/distributors) of marijuana preparations in all states are potentially vulnerable to arrest and prosecution. Furthermore, the possession and administration of these products are expressly forbidden in most hospitals.
There are efforts underway to rigorously evaluate the potential usefulness of medical marijuana. Specifically, several active drugs derived from marijuana, especially CBD, are being investigated as a potential treatments of severe epilepsy in children, including infantile spasms. A purified form of CBD is being developed and tested by GW Pharma, and a synthetic form of CBD is being developed and tested by Insys. CBD contrasts with the principal psychoactive component of marijuana called tetrahydrocannabinol (THC). THC is thought to be the constituent most responsible for the "high" of marijuana and associated effects on appetite and potential effects on cognition (e.g. amotivational syndrome, paranoia, unmasking of latent psychosis, etc). THC, which is far more potent than CBD, may be "proconvulsant" in some settings, meaning that consumption of THC may provoke seizures. In a parallel effort—not regulated by the FDA—several manufacturers (growers) have been breeding plants with high CBD content and low THC content. CBD, and other cannabinoids including THC, can be extracted from these plants using a variety of methods to produce a liquid/oil preparation which can be consumed. Despite rather compelling and emotional reports in the media, there continue to be major concerns regarding effectiveness, safety, and quality control (esp. CBD/THC content, dose variation from batch to batch, shelf-life, pesticide content, infectious—especially fungus—contamination).
A few examples of pertinent news stories are below. Beware of the limited claims and lack of compelling scientific data supporting the use of cannabis.