THE MOTHER of a six-year-old boy whose epilepsy is treated with cannabis oil has warned he will need to learn how to walk again unless he is given a stronger form of the drug.
Karen Gray successfully campaigned for a change in the law to allow doctors the right to prescribe cannabidiol (CBD) for patients like son Murray last year – provided they do not contain the psychoactive component Tetrahydrocannabinol (THC).
But now, Karen, from East Craigs, wants stronger versions of the product to be made available after he was bedridden due to contracting tonsillitis while on a family holiday.
Murray suffers from Doose Syndrome, also known as myoclonic-astatic epilepsy, which causes the youngster to experience several seizures every day.
He was prescribed Epidiolex – a form of CBD – after specialist doctors were given the power to treat the condition with medicinal cannabis.
However, the drug only shortens the length of Murray’s seizures and Karen believes another type of the oil, called Bedrolite, will be more effective in halting them altogether.
The family were on a break to Center Parcs in Penrith when Murray was taken ill, spending the night in a local hospital in nearby Carlisle.
Medics later informed Karen that Murray was suffering from tonsillitis and would have to remain under supervision in light of his pre-existing illness.
Karen told a Sunday newspaper: “When Murray has a cold or is ill, the medication stops working. He had to be tube fed and was suffering up to 28 seizures a day.”
“We were told at the hospital Murray had tonsillitis, which caused more seizures.”
“He was transferred from Carlisle hospital to Edinburgh Sick Kids and that’s where he’s still being treated.”
She added: “He is swallowing but he can’t walk independently. The drug, called Bedrolite, is our last hope. It’s hard to watch when I know there is something he could try.”
The oils don’t include THC which clinicians say is damaging to developing brains.
But Karen believes the extra ingredient could be the key to long-term prevention of the seizures and has called on doctors to stand up for the treatment.
She said: “We believe Bedrolite will be a lot more effective than Epidiolex and this has been proven by children who are taking this medication. It needs one brave doctor to stand up and do it.”
Karen added: “This is plan B, I don’t know what else to do.”
Home Secretary Sajid Javid overturned a ban on CBD-based treatment last year following pressure from campaigners including Karen.
They handed in a 170,000 signature petition to Downing Street last April, in a bid to trigger a parliamentary debate that would see the drug made available on the NHS.
Murray received his first course of CBD treatment in August.
Lib Dem MP Christine Jardine, who has supported the campaign, said: “Murray is in immense suffering and his health must come first. The whole point of the changes brought forward was to help patients like Murray to access medicinal cannabis.”