Help may be at hand for children in the Hunter who suffer from life-threatening epilepsy with trials for a new cannabis-based drug set to begin in the region.
Children with treatment-resistant epilepsy are being selected to participate in a trial of the pharmaceutical-grade, cannabis-derived medication Epidiolex through the Sydney Children’s Hospitals Network.
About 12 children from the Hunter and New England areas will take part through the state government’s Compassionate Access Scheme administered by John Hunter Children’s Hospital.
Among the community’s high-profile cases is Aberglasslyn 18-month-old Tayissa Howe, whose epilepsy causes numerous fits each day. Sometimes she stops breathing.
Her mother, Amy, said that she was “100 per cent behind” the research of cannabis in the treatment of epilepsy.
Ms Howe said Tayissa’s condition had recently improved on her current medicines so the family would not apply for this round of Epidiolex.
But she did not rule out researching and using cannabis-derived drugs for her daughter in a few years time, particularly if Tayissa exhausts other treatment options.
“As a parent I think it’s a good idea for older children,” she said.
“If the current meds keep it under control we’ll stick with them, but if they aren’t working we’re going to have to think about [cannabis-based drugs].”
Ms Howe is fighting a constant battle to treat Tayissa’s epilepsy without letting her become addicted to the strong sedatives.
“We think she’s getting addicted to the medicines she’s on,” she said.
“It affects her sleeping… [the sedatives are] not working anymore and they’re at the maximum dosage.”
Ms Howe urged people hesitant on the issue of cannabis in medicine to consider the reality parents like her face; trying to keep safe a child who suffers multiple, potentially fatal seizures every day.
No warning, no predictability – just an ever-rotating cocktail of medicines and hospital visits.
“I’d put my child’s life in front of the reputation of cannabis,” she said.
“ I’m not going to risk her life again. I’ve nearly lost her once”
Ms Howe said, through her connections in epilepsy awareness groups, she knew of people in Victoria who had experienced dramatic improvements using cannabis-derived medicines.
“I know a lot of people on it in Melbourne and the adults are finding it really good,” she said.
“One guy went from having 40 seizures a day and now, after four months, he’s seizure free.
“Looking at the epilepsy in older [children and people] it helps them, it’s fantastic.”
The drug is derived from cannabidiol (CBD) and does not contain the psychoactive THC compound of the cannabis plant.
The trial is part of the state government’s $21 million package to explore the use of medicinal cannabis.
For more information on the Epidiolex trial visit health.nsw.gov.au.