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Epilepsy and Medicinal Cannabis Awareness
Leading up to Purple Day on 26th March we will be sharing patient stories and real life experiences.
Please watch Lauryn's short film, made by his family.
Lauryn is a 6 year old little girl who stays in Kingseat, Newmachar, Aberdeenshire with her Mummy (Carol), her Daddy (Andy) and her little Brother (Ryan) who has just turned 3. She has a form of drug resistant epilepsy also known as severe refractory epilepsy and since 2020 has been taking a medicine called Bedrolite on a private prescription to help give her back a quality of life which she lost in 2019.
We’ll try and quickly tell you her story below but she also has a Facebook Page called Little Lauryn if any of you would like to read her story in full or follow her journey and see the change that this medicine has made to our little girl. Without a doubt it’s given her back a quality of life and has given us our little girl back.
Lauryn started having seizures when she was only 6 months old and just before her 1st birthday she had a prolonged seizure which they couldn’t stop so she had to be put on a life support machine and flown down to Edinburgh to their Intensive Care Unit. It was then she was diagnosed with having epilepsy.
After a few months of many seizures, 999 calls, being rushed to hospital and having tried 2 medicines which were unsuccessful, Lauryn was put on a medicine which she got control on and was seizure free for 14 months!!! This was the best 14 months of our lives. She was a happy, funny, well behaved, bright little girl who went to playgroup, play dates, parties and was constantly singing.
Unfortunately Lauryn’s seizures returned in October 2018 and became more frequent over time. Her medication was upped but despite that on the 18th of April 2019 she had roughly 25 seizures and lost the ability to walk. After that she was put on another medicine but as her seizures continued and worsened both medicines were maximised. On the 13th of June 2019 she had another prolonged seizure and had to be ventilated again and flown back down to Edinburgh. She was then put on another medicine (3 in total now). During all of this she had an MRI Scan which came back all clear but on the 23rd of July 2019 she went down to stay in Dundee Hospital for a few nights for an EEG and it was there we were told that every time Lauryn was going to sleep she was going into Non-convulsive Status (a non-convulsive continued seizure). She was put on yet another medicine but this time it was an unlicensed drug to try and help as it was now clear that she has a drug resistant form of epilepsy also known as severe refractory epilepsy.
Lauryn’s seizures continued and she started to rapidly deteriorate so on the 5th of August 2019 we took her to Aberdeen hospital at 23:00 as she hadn’t eaten or drank barely anything for weeks, her weight had dropped to 1st 13lbs and all she wanted to do was sleep. She was only 3 years old and was like a zombie as she was so heavily medicated. She was there for 6 weeks and from her admission, she got worse and worse as the days passed. All she wanted to do was sleep and nothing they did could keep her awake. She couldn’t hold her head and body up, lost the ability to talk, drink, hold objects, crawl and started having new seizures where her head / body would suddenly drop with no warning.
I then spoke to many other Mums in the same situation and along with spending hours and hours on good old Google I learned so much about the medicinal benefits of the cannabis plant.
During this we also discovered that the NHS were beginning to prescribe an unlicensed oil called Epidiolex which they had trialled. As Lauryn was so ill, she was lucky to be able to try it and did so from the end of August 2019. There was improvement, she even took some steps but the seizures were still there and she was suffering with the horrible side effects, the main 3 being sleepiness, severe diarrhoea and appetite suppression. She was now on 4 medicines including the NHS oil which all have horrendous side effects and she was that tired that she could barely do 2 hours at Nursery without falling asleep in their arms. We were told that she would have good days and bad days but we were finding that the bad days were outweighing the good. In fact she seemed to be getting a few good days to weeks and weeks of bad days. In December 2019 she was back to being unable to hold her head and body up again.
Because of this we really wanted to try Bedrolite which was the oil that we had been looking into. Bedrolite is going to be trialled in Holland and is legal to prescribe in the uk as an unlicensed medicine. It’s been having amazing effects on many children as it is 100% whole plant oil, where the NHS oil is isolated oil so doesn’t contain all the other benefits from the plant. It also doesn’t contain the chemicals which gives you the horrendous side effects. It does however contain the part of the plant that people get “high” from but this is less than 1% (0.2%) so it doesn’t make you high.
There are 2 children receiving an NHS prescription for Bedrolite after they ran campaigns in 2018, but despite the government changing the law back in November 2018, to state that it can be prescribed by the NHS, our neurologist won’t prescribe. This is due to the NHS not having trialled it and the NICE (National Institute for Health and Care Excellence) guidelines advising more trials are needed.
We are not silly and understood that it might not have helped her but as her parents we needed to try everything possible and exhaust all options for our little girl. So with the oil costing £182 per 10ml bottle, Carol created a Go Fund Me Page at the end of January 2020 which has since expired but the amount of support that we have received since has been amazing. If you read Lauryn’s full story on her page you will see how we obtained the oil but due to Brexit we were no longer able to obtain it from Holland on a UK prescription. So Lauryn is now prescribed it via Sapphire Medical Clinics from the ONLY Paediatric Neurologist in the UK prescribing these oils. He told them when prescribing that she was the last patient that he was taking on! Can we just say here that everything that we’ve done has been legal and Lauryn’s epilepsy team in Aberdeen have always been aware of.
We now have to pay for Lauryn’s consultations which are every 3 months and cost £50 each time and then also her oil which costs £550 per month. The cannabis oils are keeping our little girl well, she is going to school every day and enjoying her life practically seizure free with 95% seizure reduction!!!
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