A mother has hit out at doctors after failing to get a cannabis oil prescription for her son who has epilepsy so severe it could kill him.
Gina Walker’s son suffers with Lennox-Gastaut syndrome, a rare, complex and severe form of childhood-onset epilepsy.
Mrs Walker, 45, who lives in north Hull,¬†says that James, 21, has ‘tried every drug going’¬†but that no medication has truly worked.¬†
Gina Walker’s son James suffers with Lennox-Gastaut syndrome, a rare, complex and severe form of childhood-onset epilepsy
Every day since he was two months old James has suffered at least one seizure.
His parents were told he would not live to reach the age¬†of ten and his mother even began prematurely planning his funeral.
James has defied the odds, however, and recently celebrated his 21st¬†birthday.
Mrs Walker and her husband Ian now want to give him the best chance possible by having access to¬†cannabidiol (CBD oil) which has been legal to prescribe for his condition since November 2018.
But she claims that the drug is not readily available in Hull and has criticised doctors ‘playing God’ by deciding who does and does not receive it.
Mrs Walker and her husband Ian want to give James the best chance possible by having access to cannabidiol which has been legal for doctors to prescribe in the UK since November 2018
‘The only thing that has brought James down from having 100 tonic-clonic seizures a day to around 20 is thanks to his VNS operations.
‘The device works like a pacemaker and floods his brain with good electricity when he’s having a fit.
‘But he wears them out fast and has¬†already had three implants in five years when they’re meant to last much longer.
‘So when I saw that medicinal cannabis oil could be prescribed for Lennox-Gastaut syndrome, I was desperate for James to try it to see if it would help him at all, as one fit could kill him if it pushes his heart too much.
Cannabidiol is most commonly called CBD oil and is made from the cannabis plant.
The oil is often used as a natural pain relief, as an anti-inflammatory aid or to help with withdrawals.¬†¬†
It produces effects in the body by attaching to certain receptors.
There are not considered to be any significant side effects except for tiredness.
CBD can be ingested, massaged into the skin or sprayed under the tongue.
Doctors have been able to prescribe the controversial treatment to patients in the UK since November 1.
‘We were told that he was top of list in Hull for CBD oil in adults but now we are getting mixed messages at to whether he can get it.
‘I feel like James has just been overlooked because he’s older and that doctors are reluctant to prescribe it because it’s new.
‘It’s so¬†frustrating as I just want James to try anything that could help him.
‘It’s not like it’s wacky baccy that he will be taking and there are even guidelines to be followed so I don’t know why some patients are having it prescribed in some areas of the country but not others.
‘I’m so angry as so many people like James need the cannabis oil but aren’t getting it – it’s unfair for doctors to be able to play God and decide who gets a potentially life saving prescription for it and who doesn’t.’¬†¬†¬†
James was only diagnosed with Lennox-Gastaut syndrome at 15 years old. Before then his mum said ‘he used to glaze over in his eyes and not engage… his mind was there but it was trapped in his body’
His parents were told he would not live to reach the age of ten and Mrs Walker even began prematurely planning his funeral but he has recently celebrated his 21st birthday
The condition means that James is unable to talk and was only¬†able to say his first words at the age of 16 through the use of eye-gaze technology on a computer system.¬†
The constant seizures make him groggy, tired and angry.¬†
Often they have been so severe that he has been rushed to hospital because he turned blue and stopped breathing.
Each seizure for James is ‘like running a marathon’, according to Mrs Walker, but she says he keeps smiling after every episode and¬†has¬†‘the best life he can have’.
She added: ‘I spent the first ten years of James’ life planning his funeral, just seeing his life as being on an egg timer.
‘I just existed rather than lived which, looking back, made me so angry and upset as it felt like we were just looking out for which seizure would kill him, rather than enjoying life with him.
‘So based on the prognosis he was given, we are so happy that he’s got to his 21st birthday.
Mrs Walker has¬†criticised doctors for ‘playing God’ by deciding who does and does not receive the CBD oil
The 21-year-old is unable to speak because of his condition but has learnt to communicate using¬†eye gaze technology
‘He was only actually diagnosed at 15 with Lennox-Gastaut syndrome and up until then, he used to glaze over in his eyes and not engage… his mind was there but it was trapped in his body.
‘James’s first words at 16 were ‘hello mum’.
‘Being able to communicate through the computer gave him a new lease of life and allowed him to make jokes and get his personality across.
‘People think we must get used to James having seizures but you never do and they can be terrifying.
‘When I get up on a morning, I put the fact that he could have a serious fit that kills him in the back of my mind but now and again I can still get overwhelmed and teary, mainly out of frustration.
‘But then I see James smiling even after his seizures and think it’s him going through it, not me, and if he can be brave then so can I.’¬†
Lennox-Gastaut syndrome is very rare and only occurs in around three in every 100 children with epilepsy.
It often begins when the child is¬†between three and five years old.
The most common symptoms of Lennox-Gastaut syndrome are tonic and atonic seizures.
Atonic attacks¬†or ‚Äėdrop attacks‚Äô result in the child¬†suddenly falling to the ground, which is often mistaken for poor balance.
Tonic attacks cause the sufferer’s body to stiffen and can last for for up to several minutes and will usually happen when the person is asleep.
Treating Lennox-Gastaut syndrome is notoriously¬†difficult and prescribed remedies often have varying results.¬†¬†