Parents Report Mixed Results from Cannabis Extracts for Children's Epilepsy | Research

The takeaway

Among 75 children given oral cannabis extracts for epilepsy, 57% of parents reported some improvement and 33% saw seizures cut by half or more, but 44% experienced side effects including worsened seizures in 13%.

Read this if you are considering cannabis extracts for a child with epilepsy.

LGS: 89% response rate; Dravet: 23%; Doose: 0%

What the researchers found

Researchers reviewed records of 75 children and adolescents treated with oral cannabis extracts (OCEs) at a single epilepsy center. Parents reported any improvement in 57% and a greater than 50% seizure reduction in 33%.

Response rates varied dramatically by epilepsy syndrome: Lennox-Gastaut syndrome (LGS) had an 88.9% responder rate, Dravet syndrome 23%, and Doose syndrome 0%.

Families who had moved to Colorado specifically for OCE treatment reported higher response rates (47%) than families already living there (22%). Additional reported benefits included improved behavior (33%), language (10%), and motor skills (10%).

However, 44% experienced adverse events including increased seizures (13%), somnolence (12%), and rare serious events including developmental regression, status epilepticus requiring intubation, and one death.

Why it matters

This study provided early clinical data on cannabis extracts for pediatric epilepsy, revealing both promise and significant concerns. The disconnect between parent-reported improvement and unchanged EEGs highlighted the need for controlled trials with objective measures.

The numbers in context

75 patients; 57% any improvement; 33% >50% seizure reduction; LGS 88.9% response; Dravet 23%; Doose 0%; 44% adverse events; 13% increased seizures; relocated families 47% vs. local 22% response

How the study worked

Retrospective chart review of children and adolescents given oral cannabis extracts for epilepsy at a single tertiary epilepsy center. Parent-reported outcomes. EEG data available for 8 responders showed no improvement.

What this study cannot tell us

Retrospective, unblinded, parent-reported outcomes. No placebo control (expecting benefit could inflate response rates). Families who relocated to Colorado may have different reporting biases. Product composition varied. EEG data showed no improvement in responders.

How to read the evidence

Retrospective chart review with parent-reported outcomes and no control group. Class III evidence that provides useful signals but cannot establish efficacy.

When this study was published

Published in 2015. FDA-approved pharmaceutical-grade CBD (Epidiolex) has since been tested in randomized controlled trials for Dravet and LGS.

The bigger picture

This study was published during the early wave of interest in CBD for epilepsy, before controlled trials of pharmaceutical-grade CBD (Epidiolex) were completed. It highlighted both the potential and the risks of unregulated cannabis extract use in children.

Questions still open

Why did LGS respond so much better than Dravet or Doose? How much of the parent-reported improvement was placebo effect? Why did EEGs not improve even when parents reported fewer seizures? What explains the worsened seizures in 13%?

Common questions

Does CBD work for childhood epilepsy?

In this uncontrolled study, 33% of parents reported meaningful improvement. However, response varied hugely by syndrome type, and there was no placebo control. Subsequent randomized trials of pharmaceutical-grade CBD showed clearer efficacy for specific epilepsy syndromes.

Are cannabis extracts safe for children with epilepsy?

In this study, 44% experienced side effects including increased seizures (13%), drowsiness (12%), and rare serious events. The review emphasized the need for controlled studies before drawing conclusions about safety.

Read the original research

Parental reporting of response to oral cannabis extracts for treatment of refractory epilepsy.

Epilepsy & behavior : E&B, 45, 49-52

View on PubMed ↗Publisher’s paper ↗

Citation

Press, Craig A; Knupp, Kelly G; Chapman, Kevin E. (2015). Parental reporting of response to oral cannabis extracts for treatment of refractory epilepsy.. Epilepsy & behavior : E&B, 45, 49-52. https://doi.org/10.1016/j.yebeh.2015.02.043