At 10 weeks old our son Charlie was diagnosed with infantile spasms and West Syndrome, but after numerous tests and scans no cause could be found. He began treatment with prednisolone and vigabatrin which really helped and he was initially spasm free with a clear EEG.
Apart from the side effects of the steroid with his puffy face and gaining weight faster than a whale, he was doing really well. He had his first Christmas and New Year and the time arrived to begin weaning off. In January 2018 I was just leaving for work, gave him a kiss goodbye and out of nowhere he had a spasm, then another and another, so we immediately took him back to hospital.
Over the next six months we struggled to get his spasms under control, we were admitted to Addenbrookes as an emergency to get him on the Ketogenic diet as all the anti-epileptic drugs were failing. Three months later he was still no better. At this point I began seeing news articles on TV and on the internet about a little boy called Alfie Dingley who was successfully using cannabis to treat his refractory epilepsy.
Over the following months many options were tried, at one point he was on four anti-epileptics twice daily. Charlie was a zombie, he looked so fed up and sad and was still continuing to have up to 100 spasms a day. We knew we needed to do something, it was heart-breaking watching our little boy deteriorate. Next step was starting down the road to see if surgery was a possibility and transferred to GOSH for further EEGs, MRIs and PET scans.
Whilst this was happening, I had been in contact with numerous families who were using cannabis, mainly Hannah Deacon who was instrumental in changing the law so that cannabis was schedule 2 allowing it to be prescribed. Just before Christmas 2018 we asked for Epidiolex (a CBD isolate available on a compassionate program via GW Pharma) unfortunately we were turned down due to cost and policy.
In January 2019 we bought our first bottle of hemp based cannabis oil online from Colorado – Haleigh’s Hope 20:1, it had lab tests, was certified organic and they helped with dosing guidelines and interactions. We wanted to be open with our consultants and told them our plan to try this, so any alterations to his AEDs were stopped so we had a clear picture of whether it was working or not. We also had another EEG which brought devastating news. His IS was in transition, his brainwaves were showing similarities to Lennox Gastaut syndrome. We had been told as he grew older this was a possibility, but always hoped it wouldn’t happen.
In the first few weeks nothing really changed other than he seemed brighter and more alert. We increased the dose, and over the next two weeks his spasms were increasing, the cannabis wasn’t working. After an initial panic thinking that’s it, it doesn’t work for him, we spoke with Hannah and a few others and realised that sometimes the ratio might not be right as using cannabis is so individual. What works for one child may not be suitable for another.
So we moved across to another product called Charlotte’s Web, again a full extract hemp based oil. This time we did see a change in spasms, they dropped from 100 a day down to 50/60, we were cautiously pleased, but had hoped for better results, but it was doing something.
During this time, Ali and myself had joined Hannah Deacon and 16 other families (including Ilmarie Braun and Eddie) in a campaign called End Our Pain. We travelled to Parliament and we lobbied MPs, Lords and Ladies to allow for NHS prescriptions. Three months had already passed with no prescriptions for cannabis even though the law had changed to allow clinicians to do so. We spoke with over 80 MPs, had TV and radio interviews and we got to speak with the Health Secretary face to face. Whilst Ali joined the other parents in marching to Downing Street to hand in a petition of nearly 800,000 signatures, myself and Illmarie sat in on the first Health and Social select committee meeting on a review to accessing cannabis on the NHS.
From this march on Parliament Matt Hancock, the Health Secretary asked for a review into the blockages within the NHS in accessing cannabis prescriptions, which is due out in early August.
Over the following months the parents of the campaign spoke daily, between us we learnt how cannabis works with the human body and the endocannabinoid system, how licenses from the home office and surrounding prescriptions in the UK worked, who imports, how the industry works abroad from growing to the extraction of oils. We began speaking with specialist doctors here in the UK and abroad who work with cannabis and treat patients. We also continued writing and speaking with our MPs, continually pushing for prescriptions.
Being a part of the campaign gave us a unique opportunity to gain a UK private prescription for GMP (medical grade) full extract cannabis oil called Bedrolite from a company in Holland. This was amazing and the same product which had changed the lives of Alfie Dingley, Indie-Rose Clarry and Sophia Gibson.
Three months on and we are delighted to say Charlie had his first weekend in over 18 months spasms/seizure free, we have seen his development and quality of life improved significantly. His consultant, physio, portage worker, friends and family have all seen a change for the better. For the first time in his life he copied what I was saying which happened to be “Daddy”, he holds his bottle, he reaches out to take food (usually from our plates haha), he’s interacting with his environment, looking at books and toys. We are beginning to see our little boy probably for the first time. He’s still got a long journey in his development and is still very behind, but he now has that opportunity.
Unfortunately, private prescriptions come with a significant cost (a 5 day supply of Charlie’s Bedrolite is £466) and we are having to crowdfund and fundraise to enable us to continue to treat his symptoms with this medicine. How long we can continue this we don’t know and it’s the same for all of us within the campaign group. That’s why we are continuing to fight for access for every child in the UK who suffers with refractory epilepsy. Cannabis isn’t a cure, it may not work for every child, but it does have a place in treating epilepsy and is as effective as leading anti-epileptic drugs.
At the moment it is legal for any doctor on the epilepsy specialist register to prescribe and supply cannabis on the NHS. To date only two such prescriptions have been issued.
The identical medicine can be purchased in Holland for £160/bottle, but it is illegal to bring it back into the UK without an import license, which cannot be issued to an individual.
For more information please visit https://endourpain.org/