Cannabis chemical THC could be missing ‘piece to the puzzle’ in treating kids with epilepsy

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FILE PHOTO: Charlotte Caldwell, and her son Billy, sit outside the Home Office during a break in a meeting with officials to discuss how Billy can have his severe epilepsy treated with cannabis oil, which is a banned substance in Britain, in London, June 11, 2018. REUTERS/Peter Nicholls/File Photo

Sydney scientists are pushing for more research into whether the chemical in cannabis which causes a high should be included in small quantities in legal medicinal cannabis products for children with severe epilepsy.

The government-approved product contains no tetrahydrocannabinoil (THC), but scientists from the University of Sydney learned that small doses of the psychoactive chemical can be effective in reducing seizures.

The university’s Lambert Initiative for Cannabinoid Therapeutics tested 51 samples of black market medicinal cannabis extracts that Australian families were giving their children.

THC was present in 98 per cent of the samples, although the quantity was not enough to have an intoxicating effect.

Just over half of the extracts contributed to a 75-100 per cent reduction in seizures, while a third of extracts improved cognition, and a quarter helped with language skills.

Based on those findings, the team now believed more research should be done into how THC could be incorporated into a legal medicinal cannabis formulation or be used in conjunction with current anti-epileptic drug treatments, research associate Anastasia Suraev said.

“Perhaps THC may be an important piece to the puzzle,” Ms Suraev said.

“We do need to find out what these dose-dependant effects are, so what happens at the lower doses, what happens at the higher doses.”

Hunter Elwell, 14, suffers from a severe form of epilepsy known as Dravet Syndrome and is resistant to most seizure medications.

When his mother Lorraine Elwell first gave him medicinal cannabis six years ago his seizures dropped from 30-40 a week down to two or three a week.

“Overnight his seizures halved and at first I thought that was a bit of a fluke, but then as the weeks went on the seizures dropped more and more,” Ms Elwell said.

“It’s made a huge difference — it’s like I got to meet my child for the first time.”

The NSW mother used to source Hunter’s medicinal cannabis from the black market, but now uses the product approved under the Government’s special access scheme.

She is happier being inside the law these days but believes the legal product, Epidiolex, is not as effective for Hunter as the illegal products were.

“He’s still much better than what he was before we used the cannabis oil, but I definitely can see that his seizures have increased after going from the product we used to have on to the Epidiolex,” Ms Elwell said.

Even so, she keeps giving her son Epidiolex because it is legal, consistent and always available.

“It’s not better, but it’s still better than nothing,” she said.

“It also means now he can have it in respite and hospital, I’m not restricted from giving it to him, and nurses and everyone else are able to give it to him without fear of being reprimanded.”

Ms Elwell believed researchers needed to be looking at the whole cannabis plant, not just the main cannabidiol ingredient that is therapeutic, but does not produce a high.

“Without the whole plant it doesn’t seem to work as well,” she said.

“Whether that’s the THC or other parts of the plant they’ve removed, I really don’t know, but I do know that my son was better when he had a little bit of THC.”

Families turn to cheaper black-market cannabis

Ms Suraev said high doses of the psychoactive chemical are potentially dangerous for a child’s brain, but small doses could have big benefits.

“Parents are reporting great success with [extracts that contain some THC] so the question is, is there a novel formulation or a whole-plant extract that might be important in epilepsy that still hasn’t been very well researched?” she said.

“We need more rigorous scientific studies to be able to confirm the parent reports of how effective these cannabis extracts [containing THC] are.”

She added that while governments were taking steps in the right direction by easing access to medicinal cannabis for epileptic children, many families may keep turning to the black market because the products were much cheaper.

“The majority of families we spoke to were provided their [illegal] cannabis products on a compassionate basis, so either for free or by donation,” Ms Suraev said.

“For the remaining families, they paid around $270 for a month’s worth of product, which equates to around $10 a day.

“When you compare it with the current legal schemes… for a child with epilepsy a legal product costs around $1,100 per week and this equates to around $160 a day.

“In a year that’s about $60,000 and that’s a huge discrepancy and that is something that the average family simply could not afford.”

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