A Tough Act to Follow

We first met the Children’s Epilepsy Nurse when Joshua was 4 years old, when his seizures became too difficult and we had to begin our journey with medication. I can recall her coming round to our house to meet all three of us and we heard how many thousands of children she had on her casebook. It felt good to have someone experienced on our side as we had no idea how to cope with his epilepsy. She sat in some of our appointments with our neurology consultant, she trained school staff on how to administer his emergency medication and she was always at the end of a telephone when we were in crisis. She saw us in school clinics and she even visited us in A&E once , then on the ward when he was admitted and she supported us after Joshua’s brain surgery too. She supported us at the tribunal in 2011 to change special schools to his current one, which had the real advantage of a school nurse. The Children’s Epilepsy Nurse has been a constant in our journey with epilepsy for the last 14 years. She never sugar coated things, she understood how awful Joshua would be feeling , not only after seizures but she would often tell school staff at his Annual Review meetings how exhausting Joshua would find just moving around and functioning on a day to day basis.

This week, she came to our home one more time, to hand us over to the Adult Epilepsy Nurse. We had a lovely chat, like old friends, before Joshua arrived home from school and then she met the tall slim young man that her patient had become. Joshua stayed briefly in the room while I removed his helmet and boots and gave him his medication, then he relaxed on his own in his den , while we continued to talk about him. The new nurse seemed very pleasant and she too will be on the end of a telephone, when we are in crisis – it was explained that I only ever call up in crisis, as I had been managing Joshua’s seizures for so long, that I would have tried everything in my power before reaching for the phone. She will receive the large paper file on Joshua’s history this week, as I cannot even remember the names of all of the anti epileptic drugs that we have tried over the years: there was the terrifying one that turned Joshua into a cross monster, the one that was so potent that he had to go for weekly blood tests and the one that gave him a thrilling honeymoon period of no seizures for a fortnight, then they came crashing back, for example. None of their side effects make good reading, so much so that at times we have not been sure if it was the seizures or his drugs that made him so sleepy or impacted on his appetite or behaviour.

So now we begin on the next leg of his journey, saying goodbye to a familiar, friendly face. We are all, as a family, very grateful for all that she has done for us over the last 14 years, as she has been by our sides through some of the most terrifying moments. and was always kind, supportive and a good listener. If the adult equivalent is able to offer us the same service and commitment, we will be in a very strong place, but she needs to know that she has some very big shoes to fill.

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