A special scheme providing medicinal cannabis to epileptic children too sick to join the upcoming standard clinical trial in NSW has shown “promising” early signs, though doctors have warned it is not a miracle cure.
About 20 severely epileptic children have so far begun receiving the cannabis-based medicine Epidiolex under the NSW Government’s Compassionate Access Scheme, with the same number again to join the scheme in the coming weeks.
Sydney Children’s Hospital neurologist Dr John Lawson is the lead investigator for the medicinal cannabis trials for paediatric epilepsy in New South Wales.
He said the children selected for the scheme were deemed too sick to take part in clinical trials, with most suffering hundreds of seizures a day.
Just over a month after starting the oil-based cannabis treatment at Sydney and Westmead Children’s hospitals, some hopeful stories are beginning to emerge.
“One mother has reported in saying that it’s like a fog has lifted from her child, with a significant decrease in the number of seizures she’s having,” Dr Lawson said.
“For the first time in years she has had her first three or four seizure-free days and on those other days is seeing half the number of seizures she was having before, so that’s a big change for them.”
Dr Lawson said she was having hundreds of seizures a day before starting the treatment.
“Another mum has reported that for the first time her child has started to communicate and is clapping her hands and doing things she hasn’t done before,” he said.
‘This drug is not a miracle cure for everybody’
But for others taking part in the scheme, there have so far been no such benefits.
“It’s only early days and we are seeing promising signs of improvement in a few children but I don’t expect that to be the case in the majority,” Dr Lawson said.
“It’s good to see the burden lifted off in some of these cases but I would expect to see half the group to in fact see no benefit at all.
“That’s what the trials overseas would be pointing towards as well.
“This drug is not a miracle cure for everybody.”
Dr Lawson said most families were realistic because their children suffered severe, drug-resistant epilepsy and had exhausted conventional treatment