Charlie's Hope Free of Seizures.

Life is full of unexpected twists and turns. September 2017 brought a drastic change to our lives. It's been an incredibly difficult journey but we're slowly finding our new normal, however that could be taken if we can't cover costs. 

July 2017 Charlie was born and although a little complication requiring two days in NICU, he was a healthy baby, or so we thought. 

Ten weeks later, Charlie was diagnosed with Infantile Spasms. A rare form of infant epilepsy, of which is critical to gain control of seizures given the brain is still in early stages of development and changes. Failure to do so will result in life changing circumstances. 

Charlie responded well to steroids and an anti-epileptic drug specifically for his diagnosis. However the steroids were at an adult dose, the impact of which was heavy on his organs and side effects of excess fluid. Charlie was barely recognisable, despite this he was seizure free, but this was only ever going to be a short term solution. 

Upon weaning in January 4th 2018, Charlie relapsed, suffering a cluster of seizures, we immediately took him to the assessment unit, but that day was the beginning of our new normal. 

Charlie was prescribed a multitude of anti-epileptics, each one brought new hope that we'd see the control we had, but the seizures remained relentless in their number. 

We were referred to Addenbrookes for emergency ketogenic diet, this involved us measuring ingredients and removing carbohydrates from his diet. He developed strong ketones, despite not being keen at all on the recipes. Hope faded that bit more when it was clear it had no impact on seizure control. Charlie had every test including lumber punctures and genetics to try and determine a cause. Results kept returning as all was normal, which led to a diagnosis of idiopathic epilepsy (cause unknown). 

During this period Charlie was suffering over 100 seizures per day. He was missing milestones, and slowly fading. He was unresponsive to his surroundings, took no interest in objects an infant usually would. He was in an unstoppable loop of seizing, which exhausted his tiny body, on top of the sedating anti-epileptics then sleeping which triggered seizures. 

Next round of anti-epileptics began, repeating what had already failed. Late 2018 into 2019 we were on the pathway to brain surgery. Many tests and stays at Great Ormond Street Hospital and Evalina in London. The tests gave a clearer picture of the sources of excited neurons causing the seizures, but once again hope was taken when after a multi-disciplinary meeting with surgeons and neurologists, the decision was taken that surgery would unlikely help seizure control. 

2019 we had reached the end of what the NHS could offer, there were a few options, but Charlie's quality of life was now paramount and it was felt by all that these options wouldn't aid seizure control and be at a detriment to what we were trying to protect. 

As new parents (Charlie is our first) our world was turned upside down, it was clear his future would be very different to the normal, full of uncertainty and at high risk of Sudden Unexpected Death in Epilepsy (SUDEP). 

We weren't going to give up though, we spent the next months every evening researching other alternative treatments available in other countries. It was during this research that a campaign was underway here in the UK to allow access to cannabis, which research had shown to be of great benefit to children with severe epilepsy. 

November 2018 the law changed, allowing specialist clinicians to prescribe cannabis. Renewed hope was raised, there was now another option available which had good clinical evidence of efficacy and low side effects. We began discussing this as an option for Charlie with his NHS team, they were aware that CBD could be of benefit, although didn't appear to know much on the subject and reliant on guidance from governing bodies which was a clear no to prescribing. 

With the NHS not an option, we learnt of a neurologist prescribing at Portland Street Hospital. We arranged a private consultation, and in May 2019 we back to London. That day Charlie's seizures were particularly bad, during the consultation he had a number of clusters. The private neurologist was keen to help and agreed given the severity of seizures and the number of failed medicines we should give it a shot. 

Charlie was prescribed an advanced cannabis oil from Holland, although it came with a price tag of £500 per 10ml bottle. Scraping together accessible inheritance, we slowly began administering the oil twice a day. 

Roll forward a few months, a bright sunny Sunday, Charlie was alert, bright and happy taking in his surrounding and on form. We went for a walk locally, it was mid-afternoon and it dawned on us that we hadn't seen a single seizure. That day he was seizure free. 

The following weeks and months seizures returned, but significantly reduced in number and severity. A bad day was now 20 seizures and only seconds. An 85% reduction and such an improvement in his quality of life. We began to meet Charlie and see his personality shine through for the first time in his life. 

With such a great response we had to continue funding his prescription. With funds becoming tighter, we took the decision to fly to Holland to pickup his prescription directly from the dutch pharmacy. This saved us £8000, although illegal to bring his medication across the border back into the UK without appropriate licenses. 

September 2019, Charlie had an appointment with his paediatric consultant who has known Charlie since his first visit to Hospital. He was so pleased to see Charlie responding, great eye contact and taking in his surroundings, interacting with him. After a 45min appointment, Charlie had no seizures. The first time he'd been with Charlie and not seen him seize. He asked what had changed and we told him we had a private prescription for cannabis. He smiled and said great work, well done for not giving up. We asked if he'd be able to prescribe on the NHS, his response was he'd need further evidence to support such a decision. 

October 2019, Charlie had an EEG. Results were a significant reduction in background epileptic activity in comparison to the all the previous. This was evidence we needed, however, despite both his neurologist and consultant in agreement they'd prescribe if they could, they were being told they couldn't. 

Upon writing to the CEO of Addenbrookes, we were told that National Institute for Health Care Excellence (NICE) guidance prevented the trust from prescribing. This was the beginning of an 18mth legal challenge which resulted in NICE clarifying that in circumstances like Charlie's weighing up benefit vs risk that advanced cannabis medicines can be prescribed. However reality remains they cannot with other guidance and acts around funding preventing access. 

During this time the strain of covering the costs of his prescription was too much, we couldn't continue to cover such high costs with other priorities in Charlie's care needed. After long discussions and an educated risk, we change to a new oil which was availble in the UK. It was of a higher concentration requiring less oil and much cheaper per bottle. Fortunately it worked in our favour and Charlie's seizure control improved further. 

Three years later 2023, Charlie is now six, he's in a specialist school, with 100% attendance, he's continuing to develop, slowly learning to walk and make independent choices. He still faces incredible challenges with his development, but he's a bright, cheeky, adorable and happy little chap. 

But life has thrown us yet another curve ball. 

The oil he's been prescribed for the past three years is no longer available in the UK. Despite best efforts to avoid changing medication, we have no option. 

With few available options open to us, we have been prescribed  another oil, sadly it hasn't been as effective with an increase in seizures and duration. We'd like to go back to the Dutch oil, but costs remain a barrier to access which is forcing us to fundraise to support his prescription. 

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