Survey Report on Parents and Patients Related to the Use of Cannabidiol Symptomatic Epilepsy Secondary to Tuberous Sclerosis Complex (TSC) in Mexico

Abstract

A descriptive observational study using a structured survey was circulated through Facebook networks that comprised of parents of children and patients with tuberous sclerosis complex and epilepsy on conventional or medicinal cannabis/cannabidiol (CBD) treatment. Of 105 surveys, 58 were obtained by self-selection and 10 from patients treated with CBD. Forty-seven children and 11 adults, 52% male, 48% female, were included. Epileptic syndromes were present in 70.6% of the cases of which Lennox-Gastaut Syndrome (LGS) was in 20, West syndrome (WS) in 20, and epilepsy with myoclonic-astatic crises (MAE) in 6. Refractory epilepsy (RE) was present in 22 (38%) cases. Ten patients (17.2%) underwent CBD treatment; seizures decreased for 7 patients, with significant decreases in 6 and minor decreases in 1. No effect was seen in 3 patients and there were no seizure-free cases or cases where the seizure worsened. Improvement in quality of life parameters were observed. Mild adverse events were observed in 4 cases (40%). Monthly treatment costs ranged from $300 pesos with CBD to $35,000 pesos with everolimus. Average monthly costs with CBD were $4,039 ± 2,530 pesos. Patient and parent reports suggest medicinal cannabis is a therapeutic option offering improvement in seizures and quality of life at a moderate cost.