Karen Gray said she has “hit a brick wall” in terms of easing her son’s condition, which can see him have up to 12 seizures per day. Medical staff have recommended that Murray be on strictly regulated, high-fat ketogenic diet, which would mean she would have to take blood from him twice a day to make sure his blood sugar levels are normal and there was is no risk of hypoglycemia.
However, Mrs Gray believes this would create more problems for her son. Having spoken to other parents who are in the same position, she is now considering buying Cannabidiol (CBD) oil from online suppliers and using internet support groups for guidance on dosage.
Mrs Gray, from Edinburgh, launched a petition last week and had set up Murray’s Page on Facebook to raise awareness and support in the hope a licence will be granted for CBD oil to be made available on the NHS.
The case mirrors that of Alfie Dingley, aged six, from Kenilworth, Warwickshire, who has up to 30 seizures a day.
His family are campaigning to have cannabis oil made available for medical purposes in the UK, after he responded to treatment with it in the Netherlands. Home Office ministers are considering the possibility of a drug trial.
Mrs Gray said: “After speaking to a lot of parents who give their children the cannabis oil, I’ve gone from thinking it would be really irresponsible of me to go and do that without medical help to am I actually being irresponsible by not giving Murray it?
“I’ve had loads of people coming to me, saying that their child’s got epilepsy and they’ve been given the oil and it’s helped. The next thing that’s happening with Murray is they want to put him on the ketogenic diet, but I want to hold off because it’s completely impractical for us.
“He can’t deviate from anything they tell him to eat. Every meal I make has got to be handmade, he can’t have snacks and if he goes to a party he won’t be able to eat any of the food. We’re never going to be able to go on holiday. It’s just totally impracticable.”
A Scottish Government spokesperson said: “The licensing, safety and efficacy of medicines is currently reserved to the UK government and is the responsibility of the Medicines and Healthcare products Regulatory Agency who operate on a UK-wide basis.”