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

Carlos G. Aguirre-Velázquez *

Neuropediatría Tecnológico de Monterrey, Campus Salud Avenida Morones Prieto 3000 Pte. Col. Los Doctores, 64710 Monterrey, NL, México.

Mario Peral-Ríos

Neuropediatría Tecnológico de Monterrey, Campus Salud Avenida Morones Prieto 3000 Pte. Col. Los Doctores, 64710 Monterrey, NL, México.

Evelyn López-Guevara

Neuropediatría Tecnológico de Monterrey, Campus Salud Avenida Morones Prieto 3000 Pte. Col. Los Doctores, 64710 Monterrey, NL, México.

Kenny Lemus-Roldán

Neuropediatría Tecnológico de Monterrey, Campus Salud Avenida Morones Prieto 3000 Pte. Col. Los Doctores, 64710 Monterrey, NL, México.

*Author to whom correspondence should be addressed.


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.

Keywords: Cannabidiol, tuberous sclerosis complex, epilepsy.


How to Cite

Aguirre-Velázquez, Carlos G., Mario Peral-Ríos, Evelyn López-Guevara, and Kenny Lemus-Roldán. 2017. “Survey Report on Parents and Patients Related to the Use of Cannabidiol Symptomatic Epilepsy Secondary to Tuberous Sclerosis Complex (TSC) in Mexico”. Journal of Advances in Medicine and Medical Research 23 (12):1-8. https://doi.org/10.9734/JAMMR/2017/36585.

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