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\u200b\u201cHannah suggested finding a doctor in Holland willing to prescribe it. I wasn\u2019t going to just go down a back street like some of the adult patients the neurologists mentioned.<\/p>\nFor most mums, their child\u2019s first day at school brings a mix of pride and trepidation.<\/p>\n
For Elaine Levy, it was \u201cthe worst day of my life\u201d.<\/p>\n
Four-year-old daughter Fallon had previously been affected by convulsions caused by fever.\u00a0But when the school called to say Fallon was shaking, without any sign of her being hot, alarm bells rang.<\/p>\n
She was sent home and then suffered a rapid of succession of seizures.\u00a0She was rushed to hospital by ambulance and later moved to Great Ormond Street.<\/p>\n
\u201cWe were told that she had a disorder which we now know to be Lennox\u2013Gastaut syndrome, which is intractable epilepsy.<\/p>\n
\u201cWe didn\u2019t know at the time that what she had couldn\u2019t 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\u2019s was one of those conditions that could never be controlled.\u201d<\/p>\n
A \u201cmyriad of anti-epilepsy drugs followed\u201d, some of which worked to a point.<\/p>\n
\u201cShe was always having seizures in spite of the meds, just not as many and without ending up in hospital all the time.<\/p>\n
\u201cBut 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\u2019d be drooling at the mouth and she couldn\u2019t eat properly.<\/p>\n
“She was eating mashed potato for years because she was so doped up that she couldn\u2019t actually really chew.<\/p>\n
\u201cWe\u2019d take her out for an hour or so and then she\u2019d end up having a seizure and we\u2019d 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.\u201d<\/p>\n
Years later, Elaine reflects on the impact Fallon\u2019s condition had on her other two children.<\/p>\n
\u201cI realise now that they couldn\u2019t go on holidays in the heat because Fallon couldn\u2019t handle it. Basically their freedom and holidays were all stopped because of Fallon. They were side-lined, which I didn\u2019t realise at the time.\u201d<\/p>\n
The impact of the various anti-epilepsy drugs on Fallon was of great concern to Elaine.<\/p>\n
\u201cI remember seeing a neurologist who said \u2018oh 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.\u201d<\/p>\n
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.<\/p>\n
\u201cWe\u2019d 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\u2019t think it worked well at all.\u201d<\/p>\n
The device still implanted in Fallon\u2019s chest today is now redundant, and has been ever since her mum discovered medicinal cannabis.<\/p>\n
\u201cShe\u2019s 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\u2019d seen amazing results from patients who had accessed it independently.\u201d<\/p>\n
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.<\/p>\n
\u200b\u201cHannah suggested finding a doctor in Holland willing to prescribe it. I wasn\u2019t going to just go down a back street like some of the adult patients the neurologists mentioned.<\/p>\n
\u201cI found one and was astounded that they said I wouldn\u2019t 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\u2019t for me.<\/p>\n
\u201cI 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.<\/p>\n
“One minute she\u2019d be walking with me and the next she\u2019d be down, with people running around trying to find her a wheelchair because she wasn’t coming around.<\/p>\n
\u201cAnyway, we got it and walked through [the airport] with it. My neurologist said he didn\u2019t know a lot about it but advised us to treat her slowly. And it was amazing.<\/p>\n
\u201cWithin three weeks we started seeing seizures reducing. I remember the carers ringing me up and saying she hadn\u2019t had any seizures that day. Then one day I thought I\u2019d won the lottery – I couldn\u2019t get hold of her and assumed she\u2019d been taken to hospital.<\/p>\n
“But actually she\u2019d 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\u2019t watching her. But in the last week, for example, she hasn\u2019t had any.\u201d<\/p>\n
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.<\/p>\n
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.<\/p>\n
Subsequently, she was among a group of campaigning parents who spoke to the health secretary on a visit to Westminster last year.<\/p>\n
\u201cIt makes me so angry that nothing has been done yet [to open up access to cannabis medicine]. Matt Hancock said, \u2018if your neurologist believes there\u2019s nothing else for Fallon then I need to know about it\u2019.<\/p>\n
“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\u2019t ‘exceptional needs’. It’s so strict and rigid that 98 per cent of the population that need it get turned down.\u201d<\/p>\n
Fallon takes a product called Bedrolite, which contains nine per cent CBD and less than one per cent THC.<\/p>\n
Elaine makes a monthly visit to Holland, spending up to \u00a32k per month, plus the cost of flights, on the medicine.<\/p>\n
The financial toll of this arrangement saw Elaine forced to put the family home up for sale in September last year.<\/p>\n
At the time she estimated that she had spent over \u00a330,000 on Fallon\u2019s private supply. The family has also relied upon crowdfunding.<\/p>\n
\u201cI don\u2019t know if we\u2019re ever going to get an NHS prescription so I can\u2019t plan and say, in a month, we\u2019re probably going to get one.\u201d<\/p>\n
The imminent house sale and the prospect of a subsequently downsized life for Elaine\u2019s family is of course a sacrifice worth taking, given Fallon\u2019s remarkable transformation.<\/p>\n
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But, as Elaine and many fellow parents affected by epilepsy believe, it is a completely unnecessary sacrifice caused by the government\u2019s inability to react to cannabis medicine\u2019s resurgence as a potential life-saving treatment.<\/p>\n
And Elaine, who will make another protest visit to Westminster in February with campaign group End Our Pain, is not encouraged by recent developments.<\/p>\n
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.<\/p>\n
She would like to see other products, including those with THC and made from whole plant extract containing other potentially beneficial compounds, also considered.<\/p>\n
She is, however, optimistic about the ground-breaking study recently launched to monitor 20,000 patients through cannabis medicine trials.<\/p>\n
Professor David Nutt is leading the two-year trial with the aim of creating the largest body of evidence on the plant\u2019s medicinal qualities in Europe.<\/p>\n
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.<\/p>\n
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.<\/p>\n
\u201cPre-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\u2019t swallow a lot of them, so we\u2019d be putting them in yoghurts and anything else we could do to get them down \u2013 and none of them really worked.<\/p>\n
“She\u2019d start her day taking all these pills, we\u2019d 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 \u2013 being too happy could trigger a seizure, just like being upset could too. Her epilepsy was emotionally-led, as well temperature and other triggers.<\/p>\n
\u201cSo I used to end up in bed with her because she\u2019d be safe. That was Fallon\u2019s life. If we made it out for a meal, we\u2019d take a wheelchair and sit in the booth in case she keeled over. We could never finish and meal, we\u2019d soon be saying \u2018time to go kids\u2019 and we\u2019d be back in the car. She couldn\u2019t really go out with carers because it would be too much of a worry for them.\u201d<\/p>\n
In contrast, Fallon\u2019s life now extends far beyond these restrictive experiences.<\/p>\n
\u201cShe still does have seizures but there are so few and she\u2019s not standing up one minute and dropping down to the floor the next. She actually walks alongside me now.<\/p>\n
“Obviously, I\u2019m still nervous because I\u2019ve had 2o-0dd years of her having drop seizures, but I\u2019m slowly getting used to the fact that she\u2019s going to be able to come out all day or for half a day and be fine.<\/p>\n
“She now goes to the cinema, to a club to play with friends and singing \u2013 she does all sorts of things that she couldn\u2019t ever do. Her life is absolutely transformed.\u201d<\/p>\n
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.<\/p>\n
\u201cIt\u2019s amazing. I won\u2019t tell you what she says to me now,\u201d she laughs.<\/p>\n
\u201cShe\u2019ll always be vulnerable because she has learning difficulties, but her IQ is definitely changing. When she was on sedatives, she couldn\u2019t string a sentence together but now her intellect has risen as she\u2019s dropped a lot of the pills.<\/p>\n
“She\u2019ll have a chat with you and her brain\u2019s more active. The more seizures you have the more it affects your brain so she\u2019s obviously having less, she\u2019s more alert, and with it she gets a bit bolshie now!\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"
When Elaine Levy discovered medicinal cannabis for her daughter Fallon, 25, their lives were transformed immeasurably. Ensuring this change is irreversible comes at a heavy cost, however, as Elaine tells Cannabis Health. <\/p>\n","protected":false},"author":12,"featured_media":5832,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_cbd_carousel_blocks":"[]","content-type":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_EventAllDay":false,"_EventTimezone":"","_EventStartDate":"","_EventEndDate":"","_EventStartDateUTC":"","_EventEndDateUTC":"","_EventShowMap":false,"_EventShowMapLink":false,"_EventURL":"","_EventCost":"","_EventCostDescription":"","_EventCurrencySymbol":"","_EventCurrencyCode":"","_EventCurrencyPosition":"","_EventDateTimeSeparator":"","_EventTimeRangeSeparator":"","_EventOrganizerID":[],"_EventVenueID":[],"_OrganizerEmail":"","_OrganizerPhone":"","_OrganizerWebsite":"","_VenueAddress":"","_VenueCity":"","_VenueCountry":"","_VenueProvince":"","_VenueState":"","_VenueZip":"","_VenuePhone":"","_VenueURL":"","_VenueStateProvince":"","_VenueLat":"","_VenueLng":"","_VenueShowMap":false,"_VenueShowMapLink":false,"footnotes":""},"categories":[33,30,43,32],"tags":[],"yoast_head":"\n