Catherine Jacobson, Ph.D. & Brenda E. Porter, M.D., Ph.D.
Department of Neurology, Stanford University
Severe childhood epilepsies are characterized by a high seizure burden and are often associated with neurodevelopmental delays. When traditional medications fail to control a child’s seizures, families look to alternative treatments to help their children. One of these alternative treatments that has become more widespread over the past year involves the use of a compound from the Cannabis plant, Cannabidiol (CBD). CBD is a non-psychoactive compound that has been shown to have anticonvulsive properties in a number of animal models of epilepsy. In limited human adult trials, CBD has shown promise as an anticonvulsant with very few negative side effects. The purpose of this survey was to understand current use of CBD in children with treatment-resistant epilepsy.
The Stanford University institutional review board judge the study exempt from requiring full review by the board. Study data were collected and managed using REDCap electronic data capture tools hosted at the Stanford Center for Clinical Informatics. The CBD survey consisted of 24 questions that measured clinical factors, the effect of CBD on the child’s seizure frequency and side effects. The CBD survey was presented to a Facebook group composed of parents dealing with issues surrounding the use of CBD to treat seizures in children with treatment- resistant epilepsy. The survey link was posted for two weeks. Twenty parents responded to the survey. Nineteen responses met the inclusion criteria, which were a diagnosis of epilepsy and CBD use. Survey responses were descriptively analyzed.
- Sixteen of 19 parents reported a reduced seizure frequency during CBD treatment
- Three of these parents reported complete seizure freedom during CBD treatment
- A child had tried an average of 12 AEDs before the parent began CBD treatment
- The most often reported side effects were better mood, increased alertness, better sleep and drowsiness
- Common negative side effects often associated with other AEDs were notably absent from parent reports about CBD
- Parents are administering CBD to their children as an alternative treatment when traditional anti-seizure medications have failed.
- Parents report a high rate of success in reducing seizure frequency with CBD treatment
- CBD treatment appears to be behaviorally well-tolerated, with some positive side effects not normally noted with other AEDs
- A pharmaceutical-grade formulation of CBD would reduce the risks associated with artisanal preparations that contain THC
- Further study is required for objective measurements of CBD’s safety, tolerability and efficacy
This work was supported by the NIH/NINDS Epilepsy Training Grant 5T32NS007280. We would like to thank the members of the Pediatric Cannabis Therapy Facebook Group for their time and effort in filling out the survey.