A short while ago there was a lot of media attention on the use of cannabis oil in the treatment of epilepsy and a lot of friends and family have asked me if it would help Joshua and whether or not we will be trying it? I love to read the success stories that fill the newspapers about the miracle cures that epileptics have found, as they give us all hope that one day that we could end Joshua’s seizures. However these stories are always tinged with sadness too, as we know everything that we have tried so far – numerous anti-epileptic drugs, ketogenic diet and brain surgery – and none of them have rid Joshua of his disruptive seizures.
Cannabis, as far as I understand it, has had some success with some patients with a specific syndrome, that Joshua does not have and therefore we remain cautious . Joshua developed epilepsy because he suffered devastating brain damage at birth, so the structure of his brain has created the epilepsy, so my feeling is that cannabis oil is unlikely to help him. We discussed the use of cannabis oil with his neurology consultant at our last visit, as I would not try anything without discussing it with her first, just in case there were risks when combined with Joshua’s exisiting medication. She told us that medical trials were still ongoing to investigate its impact on children with epilepsy and that there would be more evidence next year. I am content to wait for that more considered medical evidence as ,although he still has seizures, they are as infrequent as they have been in his life, so I am happy not to rock that particular boat at present.
Should he be as extreme as he was back in 2010-2013,when he had several tonic clonic seizures every day and was forever hurting himself as he came crashing to the ground, then we would probably be desperate enough to try anything. If cannabis had been offered to Joshua back then, of course we would have tried it before embarking on brain surgery at Great Ormond Street hospital, as this was just about the most extreme invasive lengths we could go to.
So for now, please do not think that I am closed-minded about cannabis oil, I embrace any opportunity to be seizure-free, as I am sure Joshua’s current heightened awareness is due in part to the reduction in his seizure activity. But neither am I rushing to the health food shops to buy this drug off the shelf to home-medicate, just on the off-chance that it might help our son. Epilepsy management is another tightrope that we walk and while we are relatively steady and balanced at present, I am not prepared to knock Joshua off balance; the risk of getting it wrong, through ignorance, is too great for me, so I will bide my time and wait to hear what the ‘experts’ say and who knows, next year this could be an option that we try.