Epileptic boy has made a remarkable recovery due to cannabis oil
Epileptic boy, seven, whose plight triggered the Government’s medicinal cannabis review now attends school every day and can even ride a bike thanks to taking the oil
- Alfie Dingley had his first seizure at eight months old and then thousands more
- Prescribed steroids turned him violent and caused him to hit his little sister
- Family moved to the Netherlands so he could take part in a cannabis oil trial
- Just five weeks later, his seizures stopped and his mood improved
- Cannabis oil will soon be available on the NHS; his mother called it a ‘miracle’
An epileptic boy whose plight triggered the medicinal cannabis review now attends school every day and can even ride a bike due to the oil.
Alfie Dingley, seven, from Kenilworth, had his first seizure at just eight months old and went on to have thousands more, some as often as every 30 minutes.
Unsure how best to treat the youngster, his doctor pumped him with steroids that left him ‘high as kite’ and even caused him to suffer psychotic episodes where he would hit his four-year-old sister Annie.
After being told the medication itself could kill him or result in him being sectioned, the family moved to the Netherlands so Alfie could take part in a cannabis oil trial.
Just five weeks later, Alfie’s seizures stopped, his mood improved and his cognitive abilities started to catch up.
When forced to return home and come off cannabis oil, Alfie’s condition immediately deteriorated, which led to Home Secretary Sajid Javid issuing a special license for the youngster to be allowed the treatment.
With medicinal cannabis oil being available on NHS prescription from November 1, Alfie’s mother Hannah Deacon said it has been a ‘miracle’ for her son. Cannabis oil contains THC, a compound that causes a ‘high’.
‘Today, Alfie is a happy and cheeky boy. He loves riding his bike and all of his cognitive development issues are much easier to deal with now,’ she said.
Alfie Dingley was ‘high as a kite’ after his doctor pumped him with steroids to control his severe epilepsy. At risk of death or being sectioned after the medication turned him psychotic, the youngster has made a remarkable recovery and can even ride a bike due to cannabis oil
Alfie’s mother Hannah Deacon (right) made the difficult decision to move her family to the Netherlands so he could take part in a cannabis oil trial. Just five weeks on, his condition improved remarkably, with his seizures stopping and him becoming a happy little boy
Speaking of how their ordeal began, Mrs Deacon said: ‘Alfie was eight months old when I heard him scream from his cot and ran up to find he was having his first catastrophic seizure.
‘He went on to have cluster seizures every half hour for three and a half weeks and ended up on life support at Great Ormond Street Hospital because he was so seriously ill and they didn’t know if he’d make it.
‘Even though he’s gone onto have thousands more seizures since, I still cry every time I see it because it’s horrendous to see someone you love having a seizure.
‘It turns out he has a very rare form of epilepsy which only affects nine boys in the world.
Mrs Deacon, who is married to landscaper and builder Drew, added:’It’s not genetic, it’s just something that’s happened spontaneously for him and we don’t know the reason why.
‘That means we don’t know his prognosis or how it’s likely to progress.’
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With his treatment options being limited, Alfie’s doctor prescribed him strong doses of intravenous steroids
‘They made him aggressive and violent, causing him to hit his sister Annie because he was high as a kite on drugs all the time,’ Mrs Deacon said.
‘He was always hungry and his face was puffy.
‘We dealt with him like [that] up until we saw a neurologist, who told us if we carried on like that Alfie would die or the drugs would make him psychotic and that he’d have to be sectioned.
‘That was not acceptable.’
Desperate, Mrs Deacon took it upon herself to research alternative treatment options and came across cannabis oil.
After nine months of research, including talking to families who had benefited from the oil, Mr Deacon spoke to her son’s neurologist.
‘His words to me were “you don’t have a choice” meaning we had to try to get it for Alfie,’ she said.
‘I will be forever grateful to him for supporting us with that.’
When the family returned home and Alfie came off cannabis oil, his condition deteriorated. He was therefore granted a special license by Home Secretary Sajid Javid to take the treatment. With the oil available on NHS prescription from November 1, Mrs Deacon called it a ‘miracle’
MEDICINAL CANNABIS WILL BE PRESCRIBED ON THE NHS FROM NOVEMBER 1
Medicinal cannabis oil will be available on prescription from next month, the Home Secretary said on October 11.
From November 1, UK laws will change to allow cannabis-based products for medicinal use to be prescribed in England, Scotland and Wales, according to a written statement from Sajid Javid.
The dramatic change to policy follows several high profile cases of patients being denied products containing THC, the psychoactive compound that makes users ‘high’, came to light.
Epileptic boy Billy Caldwell was even banned from taking cannabis oil that was prescribed to him abroad.
He was given back the medicine after a high profile campaign spearheaded by his mother forced Mr Javid to grant a 20-day emergency licence for its use.
Billy Caldwell’s mother Charlotte (pictured together) had seven bottles of cannabis oil confiscated at Heathrow Airport customs, prompting a row over cannabis oil
The Home Secretary has insisted today’s change is not the first step towards the broader legalisation of cannabis.
Mr Javid announced on 19 June that the Misuse of Drugs Regulations act of 2001 was being reviewed in a two-part investigation to allow for the prescription of medicinal-cannabis products.
In the first part of the review, the chief medical advisor, Professor Dame Sally Davies, concluded there was evidence that medicinal cannabis has therapeutic benefits.
The second part, carried out by the Advisory Council on the Misuse of Drugs (ACMD), recommended drugs that meet a clear definition of a cannabis-derived medicinal products should be placed in Schedule 2 of the Misuse of Drugs Regulations 2001.
Cannabis was previously considered Schedule 1. Drugs in this class are thought to have no medicinal value and therefore cannot be legally possessed or prescribed.
Schedule 2 drugs, such as ketamine, are those that can be prescribed and supplied by doctors and pharmacists. They can also be legally possessed by anyone with a prescription.
In 2017, when Alfie was just five years old, the family moved to the Netherlands so he could take part in a cannabis oil trial.
‘Before we went we got the blessing of Alfie’s paediatrician and our local MP as we wanted to do everything openly,’ Mrs Deacon said.
‘We’re aware that some people don’t do that but we felt we shouldn’t have to break the law to keep our son alive.
‘The doctors in the Netherlands started treating him with cannabis oil, which is administered as an oil under his tongue that is then absorbed by his bloodstream.
‘He didn’t respond to start with as it takes time for the cannabis oil to build up in the body. I was extremely worried that it wasn’t going to work.’
But just five weeks into the treatment, Alfie’s family began to notice a remarkable change.
‘He stopped having seizures. He became happier. And his cognitive development started to improve,’ Mrs Deacon said.
‘He has learning and speech delay, and had regressed as a result of his epilepsy and the steroids, and only managing to do three weeks at school.
‘Cannabis oil has been a miracle for Alfie.’
After five months of treatment in the Netherlands, Alfie’s family felt they had all the evidence they needed to campaign for medicinal cannabis oil to be made legal in the UK.
‘We returned and obviously had to take Alfie off cannabis oil. He became very unwell again,’ she said.
‘A lot of people got in touch via our Facebook page Alfie’s Hope – and those messages kept me going.
‘Our MP arranged a meeting with the Home Office in the March and we took a petition bearing 370,000 signatures to Downing Street where we met the Prime Minister Theresa May.
‘We told her about Alfie and she said she would do all she could to help. We were pleased.’
Although backed by a lot of support, the family still faced challenges getting their voice heard.
‘But then it seemed like we were faced with a pharmaceutical trial application – we weren’t a big national drugs company we were just a family with a small child who desperately needed medication,’ Mrs Deacon said.
‘It became apparent by June that we weren’t getting anywhere so I did an interview on Radio 4 where I talked about my meeting with Theresa May and how I felt I’d been let down.
‘Soon after, home secretary Sajid Javid got in touch to say they were issuing Alfie with a licence and reviewing cannabis as a medication.
‘We were delighted. Our doctor is now free to prescribe this medication for our son without worry of his career or any of his colleagues saying that he shouldn’t.
‘And, as soon as Alfie had cannabis oil back in his system, he started to do really well again.’
With his epilepsy now under control, Alfie can even ride a bike.
‘It’s absolutely amazing that he can do that,’ Mrs Deacon said.
‘We had tried to help him learn to ride his bike but he just sat there and pedalled backwards which is sad because every little boy should be able to ride a bike.
‘He’s now learnt how to ride a bike, which has been brilliant.
‘His sister Annie is four now and has started school. His condition is not impacting on her now the way it was.’
Now his epilepsy is under control, Alfie is thriving. The youngster attends school every day and has learnt to ride a bike, which his mother says is ‘absolutely amazing’
And the whole family have benefited, with Alfie no longer hitting his sister Annie (pictured being held by their father Drew) during his psychotic episodes
Mrs Deacon is speaking out ahead of an Epilepsy Action event on Thursday to raise awareness of the benefits of medicinal cannabis oil.
‘Cannabis oil will be prescribable from November 1 2018,’ she said.
‘However, a lot more needs to be done so that doctors understand the medical uses of it.
‘I feel people should have the right to use it but some doctors don’t feel it’s safe because it’s not been tested in the same way as other drugs.
‘But it’s probably one of the safest medicines you can use.
‘We produce cannabinoids in our bodies and this is the closest thing to our own make up.’
The body’s cannabinoid receptors are part of the endocannabinoid system, which is involved in physiological processes including appetite, pain-sensation, mood and memory.
‘Cannabis oil can be used for so many illnesses,’ Mrs Deacon added.
‘Doctors are used to having just one drug for one use but if your body is depleted in cannabinoids then cannabis oil can help the body neurologically with conditions like MS and Parkinsons.
‘It can also help the auto-immune system and it’s amazing for helping with pain relief, especially in conditions such as arthritis.
‘It’s good for lots of different symptoms so I believe it could help lots of people.
‘It makes me very upset because it is could be so simple. But we’re fighting 50 years of people believing cannabis is bad.
‘We need to talk about it medically not recreationally. We need to raise awareness of it.’
WHAT IS CBD OIL AND IS IT LEGAL IN THE UK?
Government advisers made it legal to buy CBD supplements in 2016
Government advisers at the MHRA made it legal to buy cannabidiol (CBD) oil in 2016 after they admitted that it has a ‘restoring, correcting or modifying’ effect on humans.
Suppliers in England and Wales have to obtain a licence to sell it as a medicine, following the decision in October two years ago.
Manufacturers are able to avoid the strict regulation by selling it as a food supplement – ignoring the lengthy process of gaining a medicinal licence.
CBD products comes in many forms, the most popular being an oil – which users spray under their tongue – or gel tablets which melt slowly in the mouth.
Cannabis oil, which is different to CBD oil because it contains THC – the compound that gives users a ‘high’ – is illegal under UK laws.
Billy Caldwell, from Castlederg, Northern Ireland, made headlines last April when he became the first Briton to be prescribed it on the NHS.
Cannabis oil, which reportedly has no side effects, influences the release and uptake of ‘feel good’ chemicals such as dopamine and serotonin.
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