84% of Parents Reported Reduced Seizures in Children Using CBD-Enriched Cannabis for Severe Epilepsy | Research

The takeaway

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.

Read this if your child has treatment-resistant epilepsy and you are exploring CBD options.

84% of parents reported seizure reduction after an average of 12 failed medications

What the researchers 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.

Why it 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 numbers in context

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 the study worked

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.

What this study cannot 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.

How to read the evidence

Uncontrolled parent survey with severe selection bias; preliminary evidence that preceded confirmatory clinical trials.

When this study was published

Published in 2013. Purified CBD (Epidiolex) was subsequently FDA-approved in 2018 for Dravet and Lennox-Gastaut syndromes based on controlled trials.

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.

Questions still open

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?

Common 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.

Read the original research

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

Epilepsy & behavior : E&B, 29(3), 574-7

View on PubMed ↗Publisher’s paper ↗

Citation

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