Elsevier

Epilepsy & Behavior

Volume 29, Issue 3, December 2013, Pages 574-577
Epilepsy & Behavior

Brief Communication
Report of a parent survey of cannabidiol-enriched cannabis use in pediatric treatment-resistant epilepsy

https://doi.org/10.1016/j.yebeh.2013.08.037Get rights and content

Abstract

Severe childhood epilepsies are characterized by frequent seizures, neurodevelopmental delays, and impaired quality of life. In these treatment-resistant epilepsies, families often seek alternative treatments. This survey explored the use of cannabidiol-enriched cannabis in children with treatment-resistant epilepsy. The survey was presented to parents belonging to a Facebook group dedicated to sharing information about the use of cannabidiol-enriched cannabis to treat their child's seizures. Nineteen responses met the following inclusion criteria for the study: a diagnosis of epilepsy and current use of cannabidiol-enriched cannabis. Thirteen children had Dravet syndrome, four had Doose syndrome, and one each had Lennox–Gastaut syndrome and idiopathic epilepsy. The average number of antiepileptic drugs (AEDs) tried before using cannabidiol-enriched cannabis was 12. Sixteen (84%) of the 19 parents reported a reduction in their child's seizure frequency while taking cannabidiol-enriched cannabis. Of these, two (11%) reported complete seizure freedom, eight (42%) reported a greater than 80% reduction in seizure frequency, and six (32%) reported a 25–60% seizure reduction. Other beneficial effects included increased alertness, better mood, and improved sleep. Side effects included drowsiness and fatigue. Our survey shows that parents are using cannabidiol-enriched cannabis as a treatment for their children with treatment-resistant epilepsy. Because of the increasing number of states that allow access to medical cannabis, its use will likely be a growing concern for the epilepsy community. Safety and tolerability data for cannabidiol-enriched cannabis use among children are not available. Objective measurements of a standardized preparation of pure cannabidiol are needed to determine whether it is safe, well tolerated, and efficacious at controlling seizures in this pediatric population with difficult-to-treat seizures.

Introduction

Childhood epilepsies beginning in the first few years of life are frequently characterized by seizures that are resistant to available treatments, including antiepileptic drugs (AEDs), ketogenic diet, high doses of steroids, and surgery [1]. A high seizure burden in early childhood likely contributes to the severe cognitive, behavioral, and motor delays common in these children [2]. When indicated treatments fail to control their child's seizures, some parents turn to alternative treatments. One of these alternative treatments is cannabidiol-enriched cannabis. The cannabis plant contains approximately 80 cannabinoids, of which cannabidiol and Δ9-tetrahydrocannabinol (THC) are the two most abundant [3], [4].

Cannabidiol and THC exert very different physiological effects. Most importantly, cannabidiol is not psychoactive. In recent years, medical uses of cannabis have focused on cannabidiol, both because of its nonpsychoactive nature and because it shows promise in treating disease [5]. However, in states where medical cannabis is legal, cannabidiol is currently only available in whole plant preparations that contain all the components of the cannabis plant, including THC. This poses significant risks when administering cannabidiol-enriched cannabis to children with epilepsy. First, cannabis use during development has been correlated with deleterious effects on brain development and cognition, primarily due to THC [6], [7]. Second, THC can be proconvulsive in epileptic brains [8], [23].

In contrast to THC, numerous studies conducted over the last 40 years demonstrate the anticonvulsant effects of pure cannabidiol in partial and generalized seizure animal models, including acute and kindling models [9], [10], [11], [12], [13], [14]. In humans, two small double-blind, placebo-controlled studies examined pure cannabidiol in adults with treatment-resistant epilepsy. In 1978, Mechoulam and Carlini randomized nine patients to either 200 mg/day of pure cannabidiol or a placebo [15]. During the three-month trial, two of four patients treated with cannabidiol became seizure-free, whereas seizure frequency was unchanged in the five patients receiving placebo. In a second small clinical trial, 15 adult patients suffering from treatment-resistant secondary generalized epilepsy were randomly divided into a group that received placebo and a group that received 400 mg of pure cannabidiol daily for up to 18 weeks [16]. Among the eight patients treated with cannabidiol, four had a marked reduction, and three had a partial reduction in seizures. One of the seven patients receiving placebo experienced a partial reduction in seizures. The most often reported side effect of pure cannabidiol was drowsiness. No patients reported psychoactive effects. In contrast, an open-label study found that cannabidiol was ineffective in controlling seizures; Ames and Cridland reported that seizure frequency was unchanged in 12 institutionalized patients with uncontrolled seizures receiving 200 mg of pure cannabidiol daily [17].

With the legalization of medical cannabis in an increasing number of states, some parents of children with uncontrolled seizures have opted to treat their children's seizures with cannabidiol-enriched cannabis. This trend has produced an online presence of parents describing cannabidiol-enriched cannabis use in children with epilepsy. We asked parents from a Facebook group to anonymously fill out a survey on their experience of giving cannabidiol-enriched cannabis to their children in order to gain insights into the current use of cannabidiol-enriched cannabis as an alternative treatment for childhood epilepsy.

Section snippets

Methods

The Stanford University institutional review board judged the study exempt from requiring full review by the board. Study data were collected and managed using Research Electronic Data Capture (REDCap) tools hosted at the Stanford Center for Clinical Informatics. Research Electronic Data Capture (REDCap) is a secure web-based application designed to support data capture for research studies [18]. The survey consisted of 24 questions that measured clinical factors, including diagnosis and

Results

The results from the cannabidiol-enriched cannabis survey are summarized in Table 1. The children ranged in age from 2 to 16 years. Thirteen children had Dravet syndrome (one of whom had epilepsy in female with mental retardation (EFMR)), four children had Doose syndrome, and one each had Lennox–Gastaut syndrome and idiopathic early-onset epilepsy. The children experienced a variety of seizure types including focal, tonic–clonic, myoclonic, atonic, and infantile spasms. In all cases, except

Summary

We found that some parents of children with severe treatment-resistant epilepsies are using cannabidiol-enriched cannabis to treat their child's epilepsy. Parents report a high rate of success in reducing seizure frequency with this treatment. Cannabidiol-enriched cannabis appears to be behaviorally well tolerated with some positive side effects not commonly associated with other AEDs. There are, of course, multiple limitations of an anonymous parental survey. We cannot verify the doses or the

Acknowledgments

The project described was supported by the Stanford University Institutional Epilepsy Training grant 5TSNS007280-27 and by the National Center for Research Resources and the National Center for Advancing Translational Sciences, National Institutes of Health, through grant UL1 RR025744. As of July 1st, 2013, Dr. Jacobson is a postdoctoral scholar at UCSF supported by GW Pharma. We would like to thank the Pediatric Cannabis Therapy and Dravet Syndrome Facebook groups for their participation in

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