Watch: Mum shares video of son's fit in cannabis oil bid
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Karen Gray said she is at the “end of her tether” watching her son have up to 600 fits a day while pleading unsuccessfully to medics to prescribe the banned drug.
The clip shows the youngster lying on his back as his body jerks uncontrollably, while his mother gently strokes his face.
Murray has been given a variety of medications by doctors, including ketamine which is often used to tranquillise horses, in an attempt to relieve his seizures – but Karen says nothing has worked.
And now, in a desperate bid to stop her son’s “nightmare” Karen shared a heartbreaking video of her son in the middle of one of his seizures.
The P1 pupil at Clermiston Primary School was diagnosed with Myoclonic Astatic Epilepsy aged two.
The five-year-old currently takes 100mg of zonegran, four 400g Epilim tablets and 5mg of clobazam – twice a day.
In a lengthy post on Murray’s Page on Facebook, Karen wrote: “I need help for Murray now. This video was taken 10 minutes ago. This is what it’s like when he has clusters. He can have many of these types per day.
“This is only one of four types of seizures he suffers from. PLEASE help me find a GP who will write this prescription. I’m looking for a GP or clinician, preferably in Scotland, who will write a prescription for Bedrolite. This is the Dutch Medical Cannabis made by Bedrocan. It contains 9% cbd and 1% THC.”
THC is the psychoactive element in cannabis which provides a “high”. Street-bought cannabis can contain THC levels anywhere between seven and 15 per cent.
Karen added that she had already been in contact with the pharmacy and had a month’s supply of the cannabis oil priced at around 100 euros that she will pay for herself.
She wrote: “All I need Murray’s consultant to do is to continue monitoring Murray as he has been doing.
“I feel I can’t wait any longer, Murray needs help now. He is in a bad way just now with the dreaded clusters of seizures. I can’t wait for the Home Office to go through thousands of applications until they get to him.”
The heart-rending clip begins with Murray lying on a bed as the seizure takes hold and his body jerks uncontrollably.
Mum-of-three Karen can be heard telling Murray “You’re ok, you’re ok” as he breathes heavily.
The youngster, visibly distressed, lies there as his mother strokes his face when there is a short break in the seizure – but seconds later it begins again.
Karen said: “I don’t know what else to do. Nothing else works, he’s on so many medications every day but the seizures keep coming. Even when he isn’t having a seizure he’s sitting there shaking. It has been a nightmare.”
The plea comes just days after the Home Office backed down over the case of Billy Caldwell, 12, whose mother went to Canada to obtain supplies of cannabis oil to treat his epilepsy.