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

            This study was an online response-based group of surveys that focused on Facebook support groups for parents that had children with epilepsy. Two surveys were run separately.  

  • One survey focused on children that had epileptic seizures that were using cannabidiol-enriched cannabis (CBD) to treat seizures.
  • The other survey focused on children with epileptic seizures that were using Stripentol, an antiepileptic compound used to treat the child’s epileptic seizures.  

Both surveys consisted of 24 questions that measured clinical factors, including seizure types and parental-reported effect of CBD usage on the child's seizure frequency as well as side effects of the drugs (i.e., CBD cannabis or Stripentol). The children in both surveys ranged in age from 2 to 16 years.

            In the survey for children using CBD to treat their epilepsy there was a total of 19 parent/children participating, and of those 13 had Dravet syndrome, 4 children had Doose syndrome, and 1 had LennoxGastaut syndrome and 1 had idiopathic early-onset epilepsy.  The children experienced a variety of seizure types.  Reported seizure frequency before administering CBD-enriched cannabis ranged from 2 per week to 250 per day.  

In all cases, except one patient (age 2 years), the children had tried other anti-epileptic treatments for more than 3 years before trying CBD to help with their seizures. Prior to using CBD for their seizures the children had been prescribed and unsuccessfully used an average of 12 other antiepileptic drugs, as well as a ketogenic diet, and vagus nerve stimulation before their parents began CBD cannabis treatment.  The parents reported levels of CBD-enriched cannabis dosage, but the authors of this study ensured no standardization of dosage. In this survey the parents reported that the dosages of CBD ranged from less than 0.5 mg/kg/day to 28.6 mg/kg/day.  Additionally, the parents reported that the dosages of THC contained within those samples were between 0 to 0.8 mg/kg/day.

Results for these 19 children using CBD were very successful.  16 of the 19 parents reported a reduction in child seizure frequency, and of those 2 parents even reported a complete stop in their child’s seizures.  An additional 3 parents reported no change in their child’s seizure behaviours.  Of those reporting a decrease in seizures 8 parents reported an 80% reduction, 3 reported a 50% reduction, and 3 reported a 25% reduction in seizure frequency.  Additionally, parents also reported better mood, increased alertness, better overall sleep, and decrease self-stimulation as a result of CBD-enriched cannabis use.  Further, 12 parents were able to get their children off other anti-eptileptic medicines.  However, some parents did report a sense of drowsiness and fatigue in their children, but from using CBD-enriched cannabis parents reported no negative side effects commonly seen with other antieptileptic drugs (e.g., vomiting, irritability, dizziness, confusion, and aggressive behaviour).

             In the survey for children using Stripentol to treat their epilepsy there was a total of 22 parent/children participating and was comprised of only children with Dravet’s syndrome.  Parents were asked how Stripentol affects their children’s seizure frequency and were asked to report any side effects that result from the drug.  Of the 22 participants surveyed 15 parents reported that Stiripentol reduced their child's seizure frequency. However, 4 parents did report a significant increase in seizure frequency, and 3 parents reported no change as a result of the drug.  Additionally, parents also reported some negative side effects as a result of using Stripentol for their children’s seizures, including appetite decrease, weight loss, insomnia, and increased self-stimulation.

              Overall, this online survey-based study suggests that CBD-enriched cannabis has a multitude of beneficial effects for children with varying types of epileptic seizures and seizure syndromes, including a reduction in seizure frequency and general benefits on cognition, mood, and overall quality of life.  Compared to the use of Stripentol, CBD-enriched cannabis seems to be better tolerated and with fewer negative and impactful side effects.

Article Authors: Catherine Jacobson, Ph.D. & Brenda E. Porter, M.D., Ph.D. 

Article Link: