84% of Parents Reported Reduced Seizures in Children Using CBD-Enriched Cannabis for Severe Epilepsy
A parent survey found that 84% of children with treatment-resistant epilepsy experienced seizure reduction with CBD-enriched cannabis, after trying an average of 12 antiepileptic drugs without success.
Quick Facts
What This Study Found
Nineteen parents of children with treatment-resistant epilepsy (13 with Dravet syndrome, 4 with Doose syndrome, 1 Lennox-Gastaut, 1 idiopathic) were surveyed via a Facebook support group. These children had tried an average of 12 antiepileptic drugs before turning to CBD-enriched cannabis.
Sixteen of 19 parents (84%) reported reduced seizure frequency: 2 (11%) reported complete seizure freedom, 8 (42%) reported greater than 80% reduction, and 6 (32%) reported 25-60% reduction. Parents also reported improved alertness, better mood, and improved sleep. Side effects were limited to drowsiness and fatigue.
Key Numbers
19 children. Average of 12 AEDs tried previously. 84% reported seizure reduction. 11% seizure-free. 42% reported >80% reduction. 32% reported 25-60% reduction. Side effects: drowsiness, fatigue.
How They Did This
Online survey of parents belonging to a Facebook group for CBD-enriched cannabis use in pediatric epilepsy. 19 responses met inclusion criteria (epilepsy diagnosis + current CBD-enriched cannabis use). Parent-reported seizure frequency and side effects.
Why This Research Matters
This was one of the earliest surveys documenting what parents of children with severe epilepsy were already doing: turning to CBD-enriched cannabis after exhausting conventional treatments. It provided the first structured data supporting what would later be confirmed in clinical trials leading to FDA approval of Epidiolex.
The Bigger Picture
This survey was historically significant because it captured the grassroots movement of parents using CBD for their children's severe epilepsy before any clinical trials existed. It helped catalyze the clinical research that eventually led to FDA approval of purified CBD (Epidiolex) for Dravet and Lennox-Gastaut syndromes in 2018.
What This Study Doesn't Tell Us
Parent-reported outcomes without medical verification. Facebook recruitment introduces severe selection bias (parents who perceived benefit were more likely to participate). No control group. No standardized CBD preparation (variable products, doses). Very small sample.
Questions This Raises
- ?Would controlled trials confirm these parent-reported seizure reductions?
- ?What CBD dose and formulation is optimal?
- ?Is it the CBD specifically or other cannabis compounds that produce the effect?
- ?Are there long-term safety concerns with pediatric CBD use?
Trust & Context
- Key Stat:
- 84% of parents reported seizure reduction after an average of 12 failed medications
- Evidence Grade:
- Uncontrolled parent survey with severe selection bias; preliminary evidence that preceded confirmatory clinical trials.
- Study Age:
- Published in 2013. Purified CBD (Epidiolex) was subsequently FDA-approved in 2018 for Dravet and Lennox-Gastaut syndromes based on controlled trials.
- Original Title:
- Report of a parent survey of cannabidiol-enriched cannabis use in pediatric treatment-resistant epilepsy.
- Published In:
- Epilepsy & behavior : E&B, 29(3), 574-7 (2013)
- Authors:
- Porter, Brenda E, Jacobson, Catherine(2)
- Database ID:
- RTHC-00719
Evidence Hierarchy
A snapshot of a population at one point in time.
What do these levels mean? →Frequently Asked Questions
Does CBD work for childhood epilepsy?
This early parent survey reported impressive results (84% seizure reduction), and subsequent controlled clinical trials confirmed that purified CBD (Epidiolex) reduces seizures in Dravet and Lennox-Gastaut syndromes. CBD received FDA approval for these conditions in 2018. However, it does not work for all epilepsy types, and the products these parents used were not standardized.
Is CBD safe for children?
This survey reported only drowsiness and fatigue as side effects. Subsequent clinical trials have confirmed CBD is generally well-tolerated in children but can cause liver enzyme elevations, sedation, decreased appetite, and diarrhea. Drug interactions with other anticonvulsants are important. Any CBD use in children should be medically supervised.
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Cite This Study
https://rethinkthc.com/research/RTHC-00719APA
Porter, Brenda E; Jacobson, Catherine. (2013). Report of a parent survey of cannabidiol-enriched cannabis use in pediatric treatment-resistant epilepsy.. Epilepsy & behavior : E&B, 29(3), 574-7. https://doi.org/10.1016/j.yebeh.2013.08.037
MLA
Porter, Brenda E, et al. "Report of a parent survey of cannabidiol-enriched cannabis use in pediatric treatment-resistant epilepsy.." Epilepsy & behavior : E&B, 2013. https://doi.org/10.1016/j.yebeh.2013.08.037
RethinkTHC
RethinkTHC Research Database. "Report of a parent survey of cannabidiol-enriched cannabis u..." RTHC-00719. Retrieved from https://rethinkthc.com/research/porter-2013-report-of-a-parent
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.