Mum begs for medicinal cannabis to ease son’s terrifying seizures
I am racing against the clock to save my beautiful son. I fear time is running out – Worried mum, Lisa Quarrell ‘ When he wakes he can’t move or talk
Amum is pleading for medicinal cannabis to treat her six-year-old son, in a desperate attempt to stop seizures which are paralysing him and robbing him of his speech.
Lisa Quarrell fears legal changes introduced last week allowing doctors to prescribe the drugs for the first time will change nothing in the short-term.
In the meantime, she fears her son, Cole Thomson, is being permanently damaged by the epileptic seizures.
She believes medicinal cannabis is his only hope after surgery and drugs failed to stop the seizures.
On Thursday new regulations came into force allowing doctors to prescribe medicinal cannabis for two forms of epilepsy.
It will also be available to treat adults with vomiting or nausea caused by chemotherapy or muscle stiffness caused by multiple sclerosis.
Home Secretary Sajid Javid introduced the change following an outcry over two boys with severe epilepsy being denied access to cannabis oil.
But Cole has neither of the two epilepsy conditions where cannabis can now be prescribed.
Cole has cortical dysplasia on the left temporal lobe of his brain, which causes around 10 paralysing seizures every night.
Without a clear diagnosis, and with the guidelines being so limited in their recommendations, getting medicinal cannabis prescribed for Cole could take many months – if at all.
Lisa, 37, from East Kilbride, fears that by the time a full diagnosis has been made, Cole will have suffered permanent injuries.
She said: “I am working against the clock to save my beautiful son. Cole has seizures every night. He has to sleep beside me to allow me to keep close eye on him.
“When he wakes up he is unable to move his right side or speak.”
The primary one schoolboy had brain surgery when he was two but the seizures returned after six months.
“Within two years they had worsened,” she said. “They are now making a serious impact on his memory, speech and ability to retain information. They make him terrified and confused.
“He is now repeating primary one at school.”
Lisa acknowledges medicinal cannabis may not stop the seizures completely. But she has seen other children improve with reduced seizures on the drug.
She has asked Cole’s consultant to prescribe medicinal cannabis.
“He agreed saying he would put him on the waiting list but I am conscious that Cole does not have the two conditions listed by medical advisors,” said Lisa.
“Children as ill as Cole don’t have time to wait for protracted decisions.
“I realise also, that prescribing medicinal cannabis for patients like Cole is uncharted territory for many doctors. They could do with more support and guidance from the Scottish Government.
“Cole’s medical and nursing team are amazing but their hands are tied.”
Lisa, a UNISON union official, says she may have to take Cole to the Netherlands in order to get treatment – and will launch a crowdfunding appeal to pay for that tomorrow.
She said: “I will take Cole to Holland if that’s what it takes to stop these seizures. But I fear he won’t continue to get medicinal cannabis when we return to the UK.”
Doctors are divided on the benefits of the drug.
The British Paediatric Neurology Association (BPNA) advises doctors medicinal cannabis appears to work in treating two epileptic conditions.
And it says there are studies which suggest it may also work in treating other childhood epilepsies.
But the Royal College of Physicians is more cautious.
Medicinal cannabis expert, neurology professor, Mike Barnes, said: “It is extremely difficult for patients to access medicinal cannabis because specialists have to be in favour of it. Some are and others are not, because of their very conservative attitude to medicinal cannabis.
“Seizures can be fatal, though I sincerely hope they won’t be.”
The Scottish Government has also endorsed medicinal cannabis and directs doctors towards BPNA guidance.
The Scottish Government said: “We welcome the UK Government’s decision to reschedule cannabisbased medicinal products for medicinal use. The Scottish Government has issued guidance to clinicians, setting out what the regulatory change will mean in practice.”
Child epilepsy sufferer Alfie Dingley, seven, has a different epilepsy condition and is now leading a normal life after getting medicinal cannabis says his mum, Hannah Deacon.
Medicinal cannabis has also improved seizures in Murray Gray, five, from Edinburgh and Billy Caldwell, 12, from Belfast.
But Billy’s mother Charlotte Caldwell last week told how she is still having to take him to Canada for the treatment as the type of medicinal cannabis he needs is not allowed under the new rules.
Murray’s mother, Karen Gray, moved to Holland seeking medicinal cannabis treatment before she was able to persuade the NHS in Scotland to prescribe it.
But she agrees parents will still have to battle to access the drug, despite the go-ahead for specialist doctors to prescribe it.
Tomorrow, more than 60 UK doctors will begin a course in medicinal cannabis run by Newcastle-based Professor Barnes.
The new guidelines are temporary and will be replaced by permanent guidelines next October.