Ella is a 23-year old female with a history of medication resistant epilepsy. She works part time in a local store and is in her second year of agriculture course at local TAFE.
Ella was diagnosed at 18 months of age, however, her mother states that the events started at about 4 months with periodic head nodding and epileptic spasms following at about 15 months old.
She trialled over 23 antiseizure medications in various combinations with no success. The only period of seizure freedom lasting 4 months was when Ella tried a weight loss version of the ketogenic diet when she was 15 years old. Seizures returned when Ella introduced more carbohydrates into her diet as ‘the diet was too difficult to stick to’. Her neurologist had genetic testing to rule out GLUT1 deficiency syndrome as a cause of her epilepsy but there was no indication of known genetic signals for epilepsy.
Her seizure frequency is currently one to two tonic clonic seizures per night lasting about 1-2 minutes with urinary incontinence, occasional tongue biting. When two tonic clonic seizures occur in one night, Ella is not fully functional until 3-4pm the next day.
Ella’s medications included mysoline (Primidone) 450mg BD, carbamazepine (Tegretol) 700mg BD, clonazepam (Rivotril) 0.5mg BD.
Ella had a trial of CBD 100mg BD (TGA Category 1) for 6 weeks with an improvement in seizure frequency experiencing only 2-3 tonic clonic seizures per week. Antiseizure medications were reduced to mysoline (Primidone) 100mg BD, carbamazepine (Tegretol) 100mg BD, clonazepam (Rivotril) 0.5mg BD over the 6 week period.
During this at week 6 week Ella contracted a bacterial chest infection which increased her seizure frequency and duration, resulting in an emergency ambulance transfer to the local rural hospital for status epilepticus. Paramedics administered two 5mg doses of intranasal midazolam during the 20-minute journey to the hospital. Despite this, her seizures continued, and she was administered IV sodium valproate in the Emergency Department and then IV antibiotics. Ella’s regular neurologist was contacted and was not aware of the addition of the cannabinoid-based medication and ordered it to be ceased and to revert to her usual regime of antiseizure medications. Ella was admitted to hospital for 6 days to stabilise her seizure activity.
Ella contacted her regular neurologist to make a follow up appointment and was told that the Neurologist would not continue to treat her if continued with the cannabinoid- based medications.
As Ella had experienced a period of improved seizure control whilst taking CBD, she was seeking to find a doctor who was experienced in epilepsy management and medical cannabis. After a word-of-mouth referral, Ella was seen by a neurologist who worked in conjunction with a GP who was experienced in prescribing cannabinoid-based medications. Over a 5-month period Ella was prescribed CBD (TGA Category 1) titrating up to 450mg BD with cessation of Carbamazepine (Tegretol) and Clonazepam (Rivotril).
Ella has since had 17 weeks of seizure freedom with significant improvement in memory and functional capacity.
Ella is being monitored monthly, she is keeping daily records of her sleep, physical activity and any suspected seizure activity. Her mother has confirmed the significant improvements and is anticipating an end to the ‘honeymoon’ period and expressed her concerns. Ella has been counselled to have realistic expectations and is aware that there can be a honeymoon period where efficacy is lost.
The GP explained the option if seizure activity returns is to introduce a 1:50 THC:CBD blend as THC in low doses is considered anticonvulsive (Hausman-Kedem, Menascu & Kramer, 2018). The introduction of THC will not impact Ella’s ability to get to work, TAFE or socialise as she is unable to drive due to experiencing the occasional daytime seizure.
Hausman-Kedem, M., Menascu, S., & Kramer, U. (2018). Efficacy of CBD-enriched medical cannabis for treatment of refractory epilepsy in children and adolescents–An observational, longitudinal study. Brain and Development, 40(7), 544-551. Efficacy of CBD-enriched medical cannabis for treatment of refractory epilepsy in children and adolescents – An observational, longitudinal study – PubMed (nih.gov)
N.B. These products are not registered on the Australian Register of Therapeutic Goods (ARTG) and are only available to be prescribed through the TGA’s Special Access Scheme (SAS), the Authorised Prescriber Scheme (AP) or by clinical trial.