The Colour Purple

26th March is Purple Day, did you know? It is a day to get people to talk about epilepsy and to increase awareness of the condition, which is shared by more than half a million people in the UK. Cerebra is a UK Charity dedicated to helping the parents of children with brain-related neurological conditions and I have written several articles for them in the past and they asked if I would write about our experiences with epilepsy as part of their promotion of Purple Day. I wrote the following article for them

https://cerebra.org.uk/latest-news/emma-joshua-and-the-challenges-of-epilepsy/

I have tried to explain what it has been like to live with the condition and how it has impacted our family life over the years. Epilepsy is a complex condition which is not well understood by the general public ; I was ignorant too until it became a huge part of our lives. I was certainly unaware of SUDEP ( Sudden Unexpected Death in Epilepsy) which kills 600 sufferers of epilepsy every year. This happened to a young boy at school in the summer holidays when Joshua was still at school and of course, everyone was devastated. The school beautifully celebrated the boy’s short life but how would his family ever come to terms with that death? I have to admit that when Joshua does not wake up during the night around 3am but sleeps right through, and has a lie in, I often creep into his bedroom to check that he is still breathing, which is a frightening assumption to make, but the risk is always there.

These sudden deaths appear to be most common during the night, which is a terrifying prospect, and which is why, over the years, I have developed the super-skill to listen out for Joshua during the night, but that is not infallible. We experimented with a bed monitor under his mattress, which was supposed to set off an alarm if it detected unusual jerky movements, indicating seizure activity. However it was too sensitive and it would go off every time Joshua turned over and we could not adjust it to the right level of sensitivity, so we abandoned it and returned to simple hearing. We have a baby monitor, with an infra red camera in Joshua’s bedroom too, so that we can watch over him when he is in bed. On several occasions I have seen him wake up, stand up and instead of walking towards the door of his bedroom, I have watched him fall backwards with a seizure, preferably back onto his bed but also onto the floor, which is why we have removed most of the solid furniture in his room , so that he should have a soft landing. Over the years, when he has gone to bed after an evening of seizure activity, or if a seizure seems to be ‘brewing’, I have chosen to lie next to him in bed as the best way to keep him safe as I will be on the spot should a seizure begin and I can cuddle him, reassure him and keep him in his bed. While that can feel the best thing to do for Joshua, it is not conducive to a good night’s rest for me, as I am on high alert all night long.

I have researched SUDEP since the young boy at school died from it, and the Epilepsy Society website says that it is largely avoidable – small comfort to Kevin’s parents! So how do I prevent it then? We can reduce the risk by…. trying to reduce the frequency of seizures that Joshua has!! Brilliant, isn’t that what we have been trying to do all of his life through anti-epileptic drugs, brain surgery and the ketogenic diet? So that is not very helpful. The website suggests that we have ,additionally, a regular review with a neurologist or epilepsy nurse. Since he became an adult, Joshua no longer has bi-annual reviews with a neurology consultant, but we do have telephone reviews with his epilepsy nurse and she can offer practical advice. The third measure on the website to reduce Joshua’s risk of SUDEP is to keep a seizure diary. I do mark on our kitchen calendar each time that we have to administer Midazolam, his rescue medication but perhaps I should keep better records than that? In the old days, pre-surgery, Joshua would have several seizures everyday, so it was no wonder that he wanted to sleep at school. The pattern is different now; these days he will go for a week to ten days with no apparent seizure activity. Now he might have a cluster of seizures every 10 to 14 days, and when they happen, they almost always require Midazolam to stop them; they would last for longer than 5-10 minutes without this intervention, potentially causing more damage to his brain if left unattended.

So on this Purple Day, perhaps I have been able to do my small part to start a conversation about epilepsy and to improve awareness of this devastating, and potentially life-threatening, condition.

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