71% of Pediatric Epilepsy Patients Stopped Using Cannabis Extracts, and Perceived Benefit Was the Only Factor That Kept Them Going
Among 119 children with epilepsy using oral cannabis extracts, 71% discontinued during the study period, with perceived seizure benefit the only factor predicting continued use, and only 13% achieving greater than 50% seizure reduction.
Quick Facts
What This Study Found
A retrospective review of 119 pediatric epilepsy patients using oral cannabis extracts (OCEs) revealed high rates of discontinuation. 71% stopped using their cannabis product during the study, with an average duration of use of 11.7 months.
Perceived seizure benefit was the only factor significantly associated with longer use (p < 0.05). However, only about 13% of patients achieved greater than 50% seizure reduction. Adverse events were reported in 19% of patients, with somnolence (drowsiness) and paradoxical worsening of seizures being the most common.
Surprisingly, families of children with Dravet syndrome (the condition that would later respond best to pharmaceutical CBD in clinical trials) terminated OCE use more quickly than families of children with other epilepsy syndromes.
Key Numbers
119 patients. 71% discontinued OCEs. Average use: 11.7 months (range 0.3-57 months). ~13% achieved >50% seizure reduction. 19% had adverse events. Somnolence and seizure worsening most common side effects. Dravet families discontinued faster.
How They Did This
Retrospective chart review of children and adolescents who received oral cannabis extracts for epilepsy treatment. Duration of use served as a proxy measure for perceived benefit.
Why This Research Matters
This study provides a reality check for cannabis-for-epilepsy enthusiasm. While surveys of cannabis-using families report high satisfaction rates, this clinical chart review tells a different story: most families discontinued cannabis extracts, and the minority who continued did so because they perceived seizure benefit. The low rate of 50%+ seizure reduction contrasts with the more optimistic patient-reported data from surveys.
The Bigger Picture
The gap between survey-based satisfaction data (where 90% report benefit) and clinical chart review data (where 71% discontinue) highlights the importance of data source. Families who continue using cannabis and respond to surveys are self-selected for positive experiences. Clinical records capture the full picture, including those who tried and stopped.
What This Study Doesn't Tell Us
Retrospective chart review relies on clinical documentation quality. The OCE products were unregulated and varied in composition and potency. Duration of use is an imperfect proxy for efficacy. Some families may have stopped for reasons other than lack of efficacy (cost, access, family decisions).
Questions This Raises
- ?Why did Dravet families discontinue sooner, given that CBD later proved effective for Dravet?
- ?Were the OCE products used by these families of sufficient quality and CBD content?
- ?Would standardized pharmaceutical CBD products produce better retention rates?
Trust & Context
- Key Stat:
- 71% of families discontinued cannabis extracts; only 13% saw 50%+ seizure reduction
- Evidence Grade:
- Moderate evidence from a retrospective chart review with a reasonable sample size.
- Study Age:
- Published in 2017, before pharmaceutical CBD (Epidiolex) was available.
- Original Title:
- Duration of use of oral cannabis extract in a cohort of pediatric epilepsy patients.
- Published In:
- Epilepsia, 58(1), 123-127 (2017)
- Authors:
- Treat, Lauren, Chapman, Kevin E(3), Colborn, Kathryn L, Knupp, Kelly G
- Database ID:
- RTHC-01538
Evidence Hierarchy
Looks back at existing records to find patterns.
What do these levels mean? →Frequently Asked Questions
Do cannabis extracts work for childhood epilepsy?
In this study of 119 children, most families stopped using cannabis extracts, and only about 13% achieved significant seizure reduction. This contrasts with more optimistic survey data because clinical records capture all patients, including those who found cannabis unhelpful.
Why did most families stop using cannabis extracts?
The study found that perceived seizure benefit was the only factor that predicted continued use. Families that did not see meaningful improvement tended to stop. Side effects (drowsiness, seizure worsening) affected 19% and likely contributed to some discontinuations.
Read More on RethinkTHC
- CBD-oil-quality-guide
- anxiety-medication-after-quitting-weed
- cannabis-chemotherapy-nausea
- cannabis-chronic-pain-research
- cannabis-epilepsy-CBD-Epidiolex
- cbd-anxiety-research-evidence
- cbd-for-weed-withdrawal
- cbd-vs-thc-difference
- medical-benefits-of-cannabis
- quitting-weed-before-surgery
- quitting-weed-medication-interactions
- quitting-weed-pregnancy
- quitting-weed-pregnant
- seniors-older-adults-cannabis-risks-medications
- weed-breastfeeding-THC-breast-milk
Cite This Study
https://rethinkthc.com/research/RTHC-01538APA
Treat, Lauren; Chapman, Kevin E; Colborn, Kathryn L; Knupp, Kelly G. (2017). Duration of use of oral cannabis extract in a cohort of pediatric epilepsy patients.. Epilepsia, 58(1), 123-127. https://doi.org/10.1111/epi.13617
MLA
Treat, Lauren, et al. "Duration of use of oral cannabis extract in a cohort of pediatric epilepsy patients.." Epilepsia, 2017. https://doi.org/10.1111/epi.13617
RethinkTHC
RethinkTHC Research Database. "Duration of use of oral cannabis extract in a cohort of pedi..." RTHC-01538. Retrieved from https://rethinkthc.com/research/treat-2017-duration-of-use-of
Access the Original Study
Study data sourced from PubMed, a service of the U.S. National Library of Medicine, National Institutes of Health.
This study breakdown was produced by the RethinkTHC research team. We analyze and report published research findings without making health recommendations. All interpretations are based solely on the published abstract and study data.