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Background The Compassionate Access Scheme (CAS) being delivered through the Queensland Children’s Hospital is designed to allow access to an investigational purified Cannabidiol oral solution to paediatric patients with severe refractory epilepsy. The objectives of this study were to conduct semi-structured interviews to: 1. Understand families’ expectations and attitudes about the use of an investigational cannabinoid product for their child’s seizures; 2. Understand families’ perceptions of Cannabidiol’s efficacy for their child’s seizures; and other aspects of their child’s behaviour, quality of life and/or cognition.Methods Children aged 2-18 years had been enrolled in, or were enrolled in a compassionate access scheme for Cannabidiol at the time of the study. Semi-structured interviews (n=19) with parents or caregivers (n=23) of children diagnosed with refractory epilepsy were voice-recorded, transcribed and analysed to generate common themes.Results Key themes emerged relating to seizure activity, family and school engagement, drug safety and legal access, efficacy, clinical support, social acceptance of the medication and program delivery. The use of Cannabidiol was perceived to have benefits in relation to reducing the severity and frequency of seizure activity for some, but not all patients experiencing refractory epilepsy. For other patients, benefits included improved social engagement, wakefulness and a reduction of side effects related to a reduction of conventional medication dosage.Conclusion This study provided unique perspectives of families’ experiences managing untreatable epilepsy, their experiences with conventional and experimental pharmacological treatments and health services. Whilst families’ perceptions showed the use of Cannabidiol did not provide a therapeutic reduction in the seizure activity for all patients diagnosed with refractory epilepsy, it’s use as an additional pharmacological agent was perceived to provide other benefits by some patient families.

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We are reporting a case of rare reflex epilepsy??startle? epilepsy effectively treated with hemispherotomy. A 6-year-old boy, a child of nonconsanguineous parentage with infantile hemiparesis presented to us with recurrent right focal seizures along with secondary generalization provoked by sudden and unexpected auditory stimuli for the last 1 year. The boy had a minimum of four episodes per day despite maximal medical management with multiple antiepileptic drugs. Magnetic resonance imaging of the brain showed severe atrophy of the whole of the left hemisphere. Interictal electroencelphographic (EEG) data showed predominantly left central epileptiform discharges. Long-term video-EEG monitoring record showed seizures of the left hemispheric origin. He underwent a left functional hemispherotomy and has been totally seizure free in the 12-month follow-up period with an improved quality of life both for him and for his caregivers. We feel that surgical management should be considered in startle epilepsy with infantile hemiparesis when seizures are refractory to the optimal medical treatment.

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