Purple Rain

There has been a run of international condition days but yesterday was Purple Day , which is an international effort dedicated to increasing awareness about epilepsy worldwide. I was surprised when looking at Facebook at lunchtime, when a photograph of him and I leapt out at me ,as a link shared by Cerebra, the charity for brain injured children. I have written them some articles about our transition to adulthood and provided some photographs to illustrate them and they were obviously recycling old material that had epilepsy in its theme.

When we were given Joshua’s diagnosis, we thought that it was his hemiplegia or cerebral palsy that would be most challenging to deal with as he grew up from a 4 day old baby. It was the GP who did a home visit , once we were home from Special Care, who first suggested that he would probably develop epilepsy , but we put it to the back of our minds at the time and focussed on helping him to get stronger. But his first seizure was when he was exactly 8 months old on Bonfire Night 2001. We had taken him out to a local bonfire, all wrapped up against the cold, and when we got home, back into the warm, he began to fit and we did not know what was happening. Temperature- related seizures in babies are common and so we dismissed it  as  a one-off febrile convulsion.

During the following summer, we noticed that Joshua’s right arm was often doing an involuntary twitch, which we videoed and queried with his consultant. He referred him for an EEG and the results were conclusive, the twitching was caused by ” epileptic charges” in his brain and we were to watch him and report back when and if it got more violent or more frequent. By the time he was 4 years old, his seizures had become bad enough to seek medication to try to control them and we first met the Children’s Epilepsy Nurse who made a home visit to let us know what we could expect.

So this nurse has been in our lives for the last 14 years. We have not had so many more home visits in that time but she is always at the end of the phone or email if I have any problems. During bad periods of clusters of seizures , we have relied upon her good advice on measures to take to try to re-gain control of his brain activity. Latterly I have tended to only need her to finalise Joshua’s Epilepsy Care Plans for school and respite, but it is reassuring to know that she is there when we need her. She was instrumental in helping us transfer from his first Special School, which had no school nurse, to his current one, even though it involved a tribunal.

Epilepsy dominated our lives from 2009 until 2016, when his seizures were out of control so we had frequent hospital admissions, 999 calls and ambulance dashes, including one air ambulance. We had reached the end of the line with anti epileptic drugs as we were told that once two had failed to take control, any other medication was unlikely to have an impact. So we invested in an alternative approach of the Ketogenic diet for 6 months, with no effect , other than making both Joshua and I miserable with the high fat, strict diet. In 2014, we made the most difficult decision of our lives and we took Joshua to  Great Ormond Street hospital for a hemispherectomy, which is brain surgery to separate the two halves of his brain to prevent the spread of seizure activity. We had been given really high odds that he would become seizure -free, but sadly that did not happen,although their frequency certainly reduced. For the first time in years, Joshua could enjoy a whole week to ten days without any full tonic clonic seizures. Post-surgery we had  two very difficult years when, after a seizure, he would be unable to sleep for 48 hours; he would be physically shattered but his brain activity would not allow him to rest. That was another challenging time in his life to manage as he would wander around in a trance, so he needed to be supervised constantly for 48 hours, so the whole family was sleep-deprived and really struggling to cope.

Fortunately, around two years ago he was given a new type of drug to try, that he takes at bedtime and that, with the addition of melatonin, brought that nightmare of sleeplessness under control. I am pleased to report that currently Joshua sleeps the best that he has ever done in his life and while they are still present in his life, his clusters of seizures are better controlled and we only need to use his emergency medication once a month on average. He will have spikes of seizures when he is unwell or perhaps over-excited, but he has plenty of seizure-free days too ,for which I am always grateful, as he never had those days pre-surgery.

So our journey with epilepsy has been a difficult one, and its shadow is always lurking around the corner, but we try our best not to let it rule our lives. I am not willing to wrap him in cotton wool and stay at home, keeping him safe while waiting for seizures to attack. We have found a way to manage a busy life, always on red alert, but never allowing epilepsy to spoil our fun.

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