Parents reported 85% seizure reduction in children with epilepsy treated with CBD, but the survey has major limitations | Research

The takeaway

In a parent survey of 117 children with epilepsy (including 53 with infantile spasms or Lennox-Gastaut syndrome), 85% reported seizure reduction and 14% reported seizure freedom with CBD products, though the study is highly vulnerable to bias.

Read this if your child has treatment-resistant epilepsy and you're considering CBD.

85% reported seizure reduction, but study authors warned of severe bias

What the researchers found

Researchers surveyed 117 parents who had given CBD-enriched cannabis preparations to their children for epilepsy. Among them, 53 had children with infantile spasms (IS) or Lennox-Gastaut syndrome (LGS), two of the most treatment-resistant forms of childhood epilepsy.

85% of all parents reported a reduction in seizure frequency, and 14% reported complete seizure freedom. The median child had failed 8 previous antiseizure medication trials before starting CBD, with a median latency of 5 years from epilepsy onset to CBD initiation. Median CBD exposure was 6.8 months at 4.3 mg/kg/day.

Reported side effects were less common during CBD treatment than with prior medications, with the exception of increased appetite (30%). Additional benefits included improvements in sleep (53%), alertness (71%), and mood (63%).

The authors explicitly cautioned that the study is "extraordinarily vulnerable to participation bias" and does not represent compelling evidence of efficacy or safety.

Why it matters

While these results must be interpreted very cautiously due to severe methodological limitations, the degree of treatment resistance (median 8 failed medications) and the perceived benefits reported by parents highlight the urgent need for controlled clinical trials of CBD for IS and LGS.

The numbers in context

117 parents surveyed, 53 with IS/LGS. 85% reported seizure reduction. 14% reported seizure freedom. Median 8 failed medications before CBD. Median CBD dose: 4.3 mg/kg/day. Median duration: 6.8 months. Improved sleep (53%), alertness (71%), mood (63%).

How the study worked

Online survey of parents who administered CBD-enriched cannabis preparations to children with epilepsy. Recruited specifically parents of children with IS and LGS. Assessed perceived efficacy, dosage, tolerability, and additional effects. No blinding, no control group, no seizure verification.

What this study cannot tell us

No blinding, no control group, no objective seizure measurement. Extraordinarily vulnerable to participation bias (parents who believed CBD helped were more likely to respond). Self-selected sample. Products varied in composition and quality. The authors themselves warned against over-interpreting.

How to read the evidence

Online parent survey with no blinding, no controls, and acknowledged extreme vulnerability to participation bias.

When this study was published

Published in 2015 before FDA approval of Epidiolex (pharmaceutical CBD) for similar conditions.

The bigger picture

This survey captured the parent experience during a period when CBD for epilepsy was generating enormous public interest but had almost no controlled data. The subsequent development of pharmaceutical CBD (Epidiolex) for these exact conditions validated parents' interest, though with more modest efficacy than this survey suggested.

Questions still open

Do these parent-reported results align with controlled trial data that followed? What proportion of the perceived benefit was placebo effect? How do parent survey results for CBD compare to similar surveys for other unproven treatments?

Common questions

Does CBD help with childhood seizures?

In this parent survey, 85% reported seizure reduction. However, the study has severe methodological limitations. Subsequent controlled clinical trials led to FDA approval of pharmaceutical CBD (Epidiolex) for specific seizure types, though with more modest effects.

Should I give my child CBD for epilepsy?

This survey cannot answer that question reliably due to its limitations. Pharmaceutical CBD (Epidiolex) has been FDA-approved for certain epilepsy types based on controlled trials. Any use of CBD in children should be discussed with the child's neurologist.

Read the original research

Perceived efficacy of cannabidiol-enriched cannabis extracts for treatment of pediatric epilepsy: A potential role for infantile spasms and Lennox-Gastaut syndrome.

Epilepsy & behavior : E&B, 47, 138-41

View on PubMed ↗Publisher’s paper ↗

Citation

Hussain, Shaun A; Zhou, Raymond; Jacobson, Catherine; Weng, Julius; Cheng, Emily; Lay, Johnson; Hung, Phoebe; Lerner, Jason T; Sankar, Raman. (2015). Perceived efficacy of cannabidiol-enriched cannabis extracts for treatment of pediatric epilepsy: A potential role for infantile spasms and Lennox-Gastaut syndrome.. Epilepsy & behavior : E&B, 47, 138-41. https://doi.org/10.1016/j.yebeh.2015.04.009