Alfie, lives with a very rare form of epilepsy called PCDH19 which, for Alfie, is a non inherited gene mutation which causes severe seizure clusters, learning delay and behaviour problems. Here, his mum tells their story into seeking medical cannabis as a treatment to her brave boy.
Prior to medical cannabis treatment, Alfie experienced more than 500 seizures a month.
We tried everything to help Alfie, including anti-epilepsy drugs, a ketogenic diet and himmuglobulins, but the only treatment that reduced his seizures was a steroid called IV Methyl Prednisone that can cause severe side effects, including mood swings, restlessness and headaches. The worst side effects are heart attack and organ failure.
When Alfie was 5, we were in hospital every week and he was receiving up to 25 doses of steroids a month. Every time we went to hospital, they said Alfie would die if he kept taking steroids, so I had to do something about it. I started to research epilepsy treatments and medical cannabis kept coming up – and felt confident that it was a positive option.
When I asked my first neurologist about medical cannabis, he told me that he would report me to social services if I decided to give this substance to my son. But I wanted to know that whatever happened, I had done everything I could to keep Alfie alive.
Eventually after changing Neurologists. I was given permission to take Alfie to Holland for medical cannabis treatment where he was assessed and immediately prescribed with the treatment he so desperately needed – Bedrolite CBD oil. Bedrolite also low THC and other minor cannabinoids. After five weeks of medical cannabis treatment Alfie experienced 17 days without a seizure – the longest amount of time he had ever gone without experiencing one.
Alfies doctor was issued with a schedule one license on 19th June 2018 to enable them to prescribe the Dutch medication on the NHS and this made history. When the law changed on 1st November 2018 to allow clinicians on the gmc register to prescribe Alfie received the first NHS prescription one of only two in the U.K. still.
Alfie will always have seizures but now we can give him the quality of life that he deserves. He has learnt to ride a horse, a bike, he is a happy little boy, developing real relationships with people.
I urge doctors to be open minded about medical cannabis: educate yourselves and listen to your patients. You have the power to change the lives of people who are very unwell.”