Reality TV

Sometimes there are television programmes on that call out to me and I was very aware of  ‘Can cannabis save our son?’ on Channel 4 last nigh,t as I had seen several previews for it, featuring one of the couples from Gogglebox. My gut feel had been not to watch it, as the previews that I had seen were sensationalised and it sounded more about Steph and Dom and less about their son, Max, and cannabis oil. But when it came to 9pm last night, I could not ignore it, just in case it gave me some useful insight into the potential of cannabis oil in the treatment of epilepsy. So I watched it and the main things that I took from the programme were :

  • It was a very familiar tale as their son celebrated his 18th birthday while the programme was being filmed. Max too had been treated with anti epileptic drugs since he was four years old , without achieving any real control over his seizures. I watched as a happy Max singing in the car, was hit by a seizure and his carer had to pull over to the side of the road while she reassured him and we saw an exhausted, pale, subdued Max afterwards. This scene was Joshua and I in the car last Friday after school.
  • I watched the tender care that his 15 year old sister lavished on Max, she played with him and protected him and he , in turn, idolised her and was constantly asking for her. Not for the first time did I wish that Joshua had a sister to take care of him and to look after him once we are no longer able to fulfill that role. They seemed to live together in an annexe in the garden and Max had a carer who would look after him during the day
  • Max was devoted to sport, watching a lot of it on television. But we watched him get excited playing tennis with his parents, playing cricket and playing golf at the driving range, so there was nothing wrong with his hand/eye coordination. It made me wish that Joshua had a passion  or hobby like that in his life, something that made him that excited and happy.
  • Steph and Dom spoke a great deal about how frightened they were for their son, how they seemed surprised that Max had reached his 18th birthday as they expected a seizure to take Max’s life one night. About how they needed to grieve for their son’s lost future and how they had hoped that if cannabis oil had worked for Max, that they simply wanted him to be able to communicate with them beyond the level of a 5 year old, and that he would have friends and a social life, so their aspirations were not too high.
  • These parents spoke about the wide range of anti epileptic drugs that they had tried and re-tried over the years, desperately seeking one that would help their sons, but without any success. they read out the grim side effects that they expect and even identified what looked like Joshua’s rescue medication, Midazolam, as the sedative that is given to prisoners on Death Row prior to receiving the death penalty! I  recognised their reference to the sense of hope that they feel whenever a new drug or treatment emerges, an optimism that this might be their son’s big chance. It would not bring Max or Joshua’s lost skills back, but it might bring some relief and stop them from losing any more of themselves.
  • During the film, the parents met or spoke to the two famous mother’s who had fought legal battles for their sons to be given cannabis oil and they spoke movingly about how the drug had changed their son’s lives: one son had given his parents a hug for the first time and the other was excited to explain that he was now able to ride a zip wire These mothers had been prepared to break the law and to travel overseas in order to receive the treatment.
  •  So the parents having done their research, approached Max’s consultant and asked to try CBD as its impact sounded miraculous. The doctor had explained that although the law had changed and it was now legal in the UK, it was not readily available on prescription, that trials are still being conducted into the potential side effects and that patients are having to put forward a case on compassionate grounds, so it is still very rare.

Over the years we have considered and tried a full range of anti epileptic drugs plus more alternative solutions like the Ketogenic diet in 2010 and brain surgery in 2014, yet still Joshua can have uncontrolled seizures that land him in A&E or that have him knocked out on a Friday night. I will ask his consultant next month  again about the chances of success with cannabis oil as we are, like Max’s parents, desperately seeking an end to this frightening and debilitating condition for our son.

Is Hope a killer?

You know that I am avidly watching ‘The A Word’ , well I continued to enjoy it last night as the story of the family coming to terms with Joe’s autism progresses. Last night, his mum briefly saw a glimpse of what her son might be like without autism; she was thrilled when he showed empathy while he was feverish, he recognised her sadness when she was looking at a photograph of her mother and they shared some memories of when he was younger. She was so happy that she had these shared lucid moments and she excitedly told her husband that he had turned a corner and was getting better. The next morning however, her autistic son returned, he refused to look at the photo abum with her again and his autistic behaviour was back. She was devastated and then her sister in law explained that ‘the fever effect’ was a documented phenomenen, when a high temperature could temporarily prevent the more extreme behaviour.

This mum had a brief insight into what her son might be like without his disability and she dared to hope that his autism was going away. We too have had that experience with epilepsy, when the seizures last year disappeared for 35 days, we began to hope that Joshua’s brian surgery had been totally successful and that at last his epilepsy had been ‘cured’. We had a glimpse of what life without epilepsy could be like and rather than assuming Joshua would have another seizure, we began to dream again that he he might not suffer again and that we could get our boy back – the cheeky son who is not falling asleep all the time.

But then hope is cruel too as it shows you the potential prize and then snatches it away again – rather like on the old darts quiz show ‘Bullseye’ when the failed finalists are teased with the speedboat and the famous words ‘Lets see what you could have won’. You start to imagine different scenarios for your future and then that hope is dashed as ‘normal’ life resumes, only somehow now it seems harder to bear than before that peep at an alternative future.It does feel rather like a cruel tease.

But I tried to regard the brief period of ‘respite from symptoms’ as an indication of what could be possible again and what life could be like. So now my expectations are higher than they were : immediately after surgery, we were dreaming of Joshua being seizure-free, but then it became clear that he would still have some seizures and they settled to a pattern of a cluster every 10-11 days. Last December the bar was raised to 35 days between seizures and that is where it has stayed as his record, a record that I am still hoping he will thrash one day. So rather than being a killer, hope can be actually what keeps us going, hope encourages us to keep on fighting as we get a glimpse of the special prize.