'A matter of life and death': parents turn to cannabis to help children

Cherie had tried her daughter on a dozen different medications, each as useless as the last, before she seriously considered introducing her two-year-old to cannabis.

'A matter of life and death': parents turn to cannabis to help children 1406795620699.jpg-620x349

'A matter of life and death': parents turn to cannabis to help children 1406795620699.jpg-620x349

Cherie's daughter Abbey suffers from a disease known as CDKL5, a rare genetic disorder characterised by violent seizures and mental and physical disability.

But it did not take Cherie long to find a huge underground movement of parents that administer medicinal cannabis to their children.

Among Facebook support groups, cannabis was freely discussed as an alternative to the legal but often ineffective medications prescribed by doctors.

"It's very widespread," Cherie said. "I was reading different posts about the use of it and the reduction of seizures thinking 'this is too good to be true'."

Cherie followed up with her own research and, when doctors said Abbey was close to death, she decided to act.

One day in January, she smuggled a vial of cannabis oil into Abbey's hospital ward, poured a quantity into the tube through which Abbey was fed and flushed it down with water.

The effects were startling. Abbey's seizures occurred less frequently and were not as violent.

Abbey's doctors were surprised to see an improvement on her brain scans.

"The paediatrician was amazed," Cherie said.

But Abby's supply of cannabis has been cut off after a federal police raid on her supplier, who had written to ACT Chief Minister Katy Gallagher about Abbey's amazing recovery. Ms Gallagher tipped off the police.

Tasmanian mother Nicole Cowles, whose eight-year-old daughter also suffers from CDKL5, said parents would start to grow their own marijuana if it was not available elsewhere.

"Where do we go?" Ms Cowles said. "We go to street-grade cannabis or we grow our own. That's not appropriate.

"This is something we will do, regardless of government reasons for not legalising it. It would be better to legalise it and then it can be regulated."

Cannabis oil is kept in a freezer and is not heated, so it is not psychoactive.

Ms Cowles said she tested it before giving it to her daughter.

Abbey's supply of cannabis oil is running dry and Cherie estimates she has weeks to live. She anticipates a return to the violent seizures that characterised Abbey's life until she started on cannabis oil, sometimes several per day, lasting up to 45 minutes.

"Her prognosis is not good," Cherie said. "It's a matter of life and death."

http://www.smh.com.au/nsw/a-matter-of-life-and-death-parents-turn-to-cannabis-to-help-children-20140731-zz24n.html

'A matter of life and death': parents turn to cannabis to help children

'A matter of life and death': parents turn to cannabis to help children

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