Long-term CBD for childhood epilepsy: 27% sustained response, but 81% had adverse events

Seven of 26 children (26.9%) achieved sustained >50% seizure reduction, including 3 (11.5%) who became seizure-free. However, 80.8% had adverse events (appetite loss 38%, diarrhea 35%, weight loss 31%), 23.1% had serious adverse events (status epilepticus, catatonia, hypoalbuminemia), and 15 (57.7%) discontinued for lack of efficacy. Retention declined rapidly in the first 6 months.

Open-label prospective study through expanded access programs (April 2013-December 2014). 26 children aged 1-17 with refractory epilepsy received CBD as add-on therapy at 5-25 mg/kg/day. Mean treatment duration was 21 months (range 4-53 months).

This is one of the longest follow-up studies of CBD for childhood epilepsy. While the responders had dramatic results (including seizure freedom), the high adverse event and discontinuation rates give a realistic picture of long-term use.

The reality of CBD for severe epilepsy is more nuanced than headlines suggest. For the minority who respond, the benefits can be life-changing. But the majority of patients in this study saw no benefit and many experienced significant side effects.

Open-label study with no placebo group. Small sample size. Artisanal CBD formulation, not pharmaceutical-grade. All patients on concurrent antiepileptic drugs making it hard to isolate CBD effects.