Study finds "huge unmet clinical need" for children with epilepsy
"It saves her life," Queensland mum Katrina Spraggon said of the medical cannabis which she said dramatically reduces her epileptic daughter's violent, potentially fatal seizures.
The Queensland mum said her daughter Kaitlyn had previously been on a "cocktail" of medications, from anti-seizure drugs to opiate painkillers. Kaitlyn has been weaned off these drugs since using medical cannabis, which is grown by a family member and refined at home.
Kaitlyn uses a formulation of medical cannabis which is high in THC and low in CBD.
"She would be blue and not breathing. I was giving her CPR all the time, the anti-seizure medication made her worse, and we just had enough," Spraggon told ten daily.
"[Cannabis] saves her life. She would have no eye contact, nothing -- now, her gross motor skills are better, she pulls herself up to stand, she's eating everything orally and not through a feeding machine."
Katrina Spraggon and her daughter Kaitlyn, with Senator Pauline Hanson (Lisa Maree Williams/Getty Images)
Her daughter's seizures, which would come every other day, now come as infrequently as once a month.
A new study has shown THC, the ingredient in cannabis that produces the high, may be more effective medically than previously thought. Parents using 'street cannabis' to address their children's epilepsy are reporting strong results.
A study of 50 parents of epileptic children using cannabis products has found even 'street cannabis' with lower levels of cannabidiol and higher levels of tetrahydrocannabidiol can have positive effects on epilepsy. Around 75 percent of families said the drug was effective in lessening seizures.
Cannabidiol, or CBD, is considered to be the key ingredient in medical cannabis while tetrahydrocannabidiol, or THC, is the main psychoactive component of the drug.
The new research, from the University of Sydney’s Lambert Initiative for Cannabinoid Therapeutics, found THC was present in most compounds being used by parents participating in the study.
Government-approved medicinal cannabis products tend to feature low doses of THC, which produces the 'high' associated with recreational marijuana, instead providing many patients with a more refined CBD product
"In countries such as Australia where legal cannabis-based products are still highly restricted, some parents are sourcing illicit cannabis extracts for their children," the report said.
The Lambert Initiative published another report finding Australian doctors wanted to prescribe medical cannabis, but were confused or discouraged by the complex bureaucracy surrounding access to the drug.
Medical cannabis was legalised by federal parliament in 2016, but only a few hundred patients -- largely those with epilepsy, or terminal illness -- have been granted access to the drug.
Advocates say the roll-out has been too slow and the drug is too hard to access.
Many patients refine cannabis plants into oil (Getty Images)
In the study, researchers found 75 percent of families reported cannabis use as "effective" for treating children with epilepsy. Half of families reported a 75 to 100 percent reduction in seizures, while a total of 65 percent reported some reduction.
“Our findings highlight the huge unmet clinical need in the management of treatment-resistant epilepsy in childhood,” said Anastasia Suraev, the study's lead author.
Most families reported sourcing the drug from a local medicinal cannabis supplier, while others said they found the drug from recreational dealers, online suppliers, or made it themselves. Only three percent accessed the drug from government schemes.
Families also reported their cannabis use had led to police becoming involved, confiscation, travel difficulties, and even being reported to child protection authorities.
"Our research indicates there is a potential role for other cannabinoids... this warrants further investigation ," said academic director of the Lambert Initiative, Professor Iain McGregor.
Spraggon has been giving her daughter medical cannabis for around four years. Her daughter endures constant pain from operations linked to her severe scoliosis, as well as being prone to daily extreme epileptic seizures.
Jenny Hallam is a South Australian woman who has faced legal action over growing and supplying medical cannabis products to people frustrated at the lack of legal access.
She speaks to people nationwide about their problems in accessing cannabis through appropriate channels, and said the current framework was unworkable.
"It's almost impossible. The lengths people have to go to is insane. People aren't getting it because it's so ridiculous," she told ten daily.
"People are accessing it on the black market. People wouldn't be risking prosecution for this, unless they were absolutely desperate. People do try to get it legally first."
Originally published here: https://tendaily.com.au/lifestyle/health/a180706cnj/mother-medication-makes-it-worse-but-cannabis-saves-her-life-20180712