Porter and Jacobson
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cannabidiol-enriched cannabis to their children in order to gain insights into current
cannabidiol-enriched cannabis use as an alternative treatment for childhood epilepsy.
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 REDCap electronic
data capture tools hosted at the Stanford Center for Clinical Informatics. REDCap (Research
Electronic Data Capture) 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 seizure types, and the parental-reported effect of
cannabidiol-enriched cannabis on the child’s seizure frequency and side effects. The survey
was presented to a Facebook group composed of approximately 150 parents supporting the
use of cannabidiol-enriched cannabis to treat seizures in their children with treatment-
resistant epilepsy. The survey link was posted and displayed for two weeks, then reposted to
the top of the group’s page for another two weeks. Twenty parents responded to the survey.
Nineteen responses met the inclusion criteria – diagnosis of treatment-resistant epilepsy and
cannabidiol-enriched cannabis use – and were included in the analysis. One response was
excluded because the child’s diagnosis did not include epilepsy.
Because the cannabidiol-enriched cannabis survey results had a large number of patients
with Dravet Syndrome and reported mostly positive outcomes for both seizure control and
side effects, we wanted to assess parents’ response to the same survey questions with a well
known and effective treatment for seizures in Dravet syndrome, stiripentol. This would
allow us to see if the parents’ responses to our seizure burden questions were similar to the
results from a clinical trial of stiripentol. In addition, side effects across the two drugs could
be compared. To this end, we administered the same survey substituting stiripentol in place
of cannabidiol-enriched cannabis. The stiripentol survey was presented to a different
Facebook support group composed of parents of children with Dravet Syndrome having
approximately 800 members. The stiripentol survey link was also initially posted for two
weeks, and reposted to the top of the group’s page for two additional weeks. Twenty-two
parents responded to the stiripentol survey and all responses were included in analysis.
Responses from both surveys were descriptively analyzed.
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, EMFR), 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 patient 14 (age 2 years), the children
experienced treatment-resistant epilepsy for more than 3 years before trying cannabidiol-
enriched cannabis. The 2 year old had experienced intractable seizures for 16 months before
trying cannabidiol-enriched cannabis. The children had unsuccessfully tried an average of
12 other AEDs before their parents began cannabidiol-enriched cannabis treatment. The
Epilepsy Behav. Author manuscript; available in PMC 2014 December 01.