For most mums, their child’s first day at school brings a mix of pride and trepidation.
For Elaine Levy, it was “the worst day of my life”.
Four-year-old daughter Fallon had previously been affected by convulsions caused by fever. But when the school called to say Fallon was shaking, without any sign of her being hot, alarm bells rang.
She was sent home and then suffered a rapid of succession of seizures. She was rushed to hospital by ambulance and later moved to Great Ormond Street.
“We were told that she had a disorder which we now know to be Lennox–Gastaut syndrome, which is intractable epilepsy.
“We didn’t know at the time that what she had couldn’t be cured. There’s a certain percentage of the population that have epilepsy that can have their meds and live a normal life. But Fallon’s was one of those conditions that could never be controlled.”
A “myriad of anti-epilepsy drugs followed”, some of which worked to a point.
“She was always having seizures in spite of the meds, just not as many and without ending up in hospital all the time.
“But really she had no quality of life. The sedative drugs they had to resort to in the end were making her zombie-like. Her head would be forward, she’d be drooling at the mouth and she couldn’t eat properly.
“She was eating mashed potato for years because she was so doped up that she couldn’t actually really chew.
“We’d take her out for an hour or so and then she’d end up having a seizure and we’d have to take her home. I think I spent most of her first 10 years in bed with her, worried that she was going to drop again. So it was a pretty bad time.”
Years later, Elaine reflects on the impact Fallon’s condition had on her other two children.
“I realise now that they couldn’t go on holidays in the heat because Fallon couldn’t handle it. Basically their freedom and holidays were all stopped because of Fallon. They were side-lined, which I didn’t realise at the time.”
The impact of the various anti-epilepsy drugs on Fallon was of great concern to Elaine.
“I remember seeing a neurologist who said ‘oh my God, we need to get her off this because its toxic’. There are all these drugs given to children that, although licensed, can cause so many problems and side-effects.”
One possible solution is vagus nerve stimulation (VNS). A small implanted device similar to a pacemaker sends electrical impulses to the brain to reduce the number and severity of seizures. Fallon tried two of these.
“We’d heard reports that it could stop the seizures completely and so we were very excited at the time. Maybe it reduced some of her seizures but I don’t think it worked well at all.”
The device still implanted in Fallon’s chest today is now redundant, and has been ever since her mum discovered medicinal cannabis.
“She’s 25 now and started taking medical cannabis about two years ago. When I first heard about it, I spoke to two neurologists who both said they’d seen amazing results from patients who had accessed it independently.”
She contacted Hannah Deacon, the mother of Alfie Dingley, a severely epileptic boy who was making headlines at the time following his treatment with medical cannabis in Holland.
“Hannah suggested finding a doctor in Holland willing to prescribe it. I wasn’t going to just go down a back street like some of the adult patients the neurologists mentioned.
“I found one and was astounded that they said I wouldn’t need to bring Fallon if I had her notes. But I was so worried about getting stopped and arrested so I thought it best to go over with Fallon so if I did get stopped, they could see my daughter with epilepsy, and could see that it wasn’t for me.
“I took her across in the July. It was a really hot day and, I have to say, it was a nightmare. From beginning to end she was having seizures, falling down in the street in Amsterdam, in the hotel, at the airport.
“One minute she’d be walking with me and the next she’d be down, with people running around trying to find her a wheelchair because she wasn’t coming around.
“Anyway, we got it and walked through [the airport] with it. My neurologist said he didn’t know a lot about it but advised us to treat her slowly. And it was amazing.
“Within three weeks we started seeing seizures reducing. I remember the carers ringing me up and saying she hadn’t had any seizures that day. Then one day I thought I’d won the lottery – I couldn’t get hold of her and assumed she’d been taken to hospital.
“But actually she’d been out all day and all evening. It was unbelievable. Before the cannabis she was having seizures every day, up to around 200 a month. She could fall over in the toilet and bang her head if you weren’t watching her. But in the last week, for example, she hasn’t had any.”
Although medical cannabis was officially legalised in the UK as a prescription medicine in November 2018, access on the NHS has not yet opened up.
Despite a supportive neurologist trying to help navigate the ambiguous, bureaucratic process of seeking access to the treatment, Elaine was unable to secure a prescription.
Subsequently, she was among a group of campaigning parents who spoke to the health secretary on a visit to Westminster last year.
“It makes me so angry that nothing has been done yet [to open up access to cannabis medicine]. Matt Hancock said, ‘if your neurologist believes there’s nothing else for Fallon then I need to know about it’.
“My neurologist absolutely supported her 100 per cent, he filled out the form for the individual funding request but they turned it down because it wasn’t ‘exceptional needs’. It’s so strict and rigid that 98 per cent of the population that need it get turned down.”
Fallon takes a product called Bedrolite, which contains nine per cent CBD and less than one per cent THC.
Elaine makes a monthly visit to Holland, spending up to £2k per month, plus the cost of flights, on the medicine.
The financial toll of this arrangement saw Elaine forced to put the family home up for sale in September last year.
At the time she estimated that she had spent over £30,000 on Fallon’s private supply. The family has also relied upon crowdfunding.
“I don’t know if we’re ever going to get an NHS prescription so I can’t plan and say, in a month, we’re probably going to get one.”
The imminent house sale and the prospect of a subsequently downsized life for Elaine’s family is of course a sacrifice worth taking, given Fallon’s remarkable transformation.
But, as Elaine and many fellow parents affected by epilepsy believe, it is a completely unnecessary sacrifice caused by the government’s inability to react to cannabis medicine’s resurgence as a potential life-saving treatment.
And Elaine, who will make another protest visit to Westminster in February with campaign group End Our Pain, is not encouraged by recent developments.
In December it was announced that the CBD drug Epidyolex would be fast-tracked into the NHS as a prescription treatment, including for children with epilepsy. Elaine believes the move is too restrictive, focusing only on a product that will not work for all epilepsy patients.
She would like to see other products, including those with THC and made from whole plant extract containing other potentially beneficial compounds, also considered.
She is, however, optimistic about the ground-breaking study recently launched to monitor 20,000 patients through cannabis medicine trials.
Professor David Nutt is leading the two-year trial with the aim of creating the largest body of evidence on the plant’s medicinal qualities in Europe.
Through his research body Drug Science, the ProjectTwenty21 initiative was launched in partnership with the Royal College of Psychiatrists. It is hoped that the trial will help to persuade policymakers to help open up access to medical cannabis.
Elaine is hopeful that Fallon can be part of the trial. In the meantime, she continues to be amazed by the difference she has seen in her daughter since she discovered medical cannabis.
“Pre-medicinal cannabis, Fallon would have to take 10 to 12 pills in the morning and the same at night. Because so many of them were sedative, she couldn’t swallow a lot of them, so we’d be putting them in yoghurts and anything else we could do to get them down – and none of them really worked.
“She’d start her day taking all these pills, we’d get her up and ready and tell the kids we were all going out. But if she got too excited, she might have a seizure – being too happy could trigger a seizure, just like being upset could too. Her epilepsy was emotionally-led, as well temperature and other triggers.
“So I used to end up in bed with her because she’d be safe. That was Fallon’s life. If we made it out for a meal, we’d take a wheelchair and sit in the booth in case she keeled over. We could never finish and meal, we’d soon be saying ‘time to go kids’ and we’d be back in the car. She couldn’t really go out with carers because it would be too much of a worry for them.”
In contrast, Fallon’s life now extends far beyond these restrictive experiences.
“She still does have seizures but there are so few and she’s not standing up one minute and dropping down to the floor the next. She actually walks alongside me now.
“Obviously, I’m still nervous because I’ve had 2o-0dd years of her having drop seizures, but I’m slowly getting used to the fact that she’s going to be able to come out all day or for half a day and be fine.
“She now goes to the cinema, to a club to play with friends and singing – she does all sorts of things that she couldn’t ever do. Her life is absolutely transformed.”
Fallon, whose special needs require 24-hour care support at her independent living flat, is also becoming much more engaged and interactive with her mum, says Elaine.
“It’s amazing. I won’t tell you what she says to me now,” she laughs.
“She’ll always be vulnerable because she has learning difficulties, but her IQ is definitely changing. When she was on sedatives, she couldn’t string a sentence together but now her intellect has risen as she’s dropped a lot of the pills.
“She’ll have a chat with you and her brain’s more active. The more seizures you have the more it affects your brain so she’s obviously having less, she’s more alert, and with it she gets a bit bolshie now!”