The Real Challenge of Childhood Epilepsy

The real challenge of childhood epilepsy is not the seizures.  Eventually, they can be controlled in most cases.  But when you have managed seizures in a child from the age of four months of age and he is now nearly twelve years old and reaching the early stages of puberty, it is behaviour that becomes the challenge.  That's where we are with Muir.  I spoke to Dr Ailsa McLelland last week, Muir's consultant at the Royal Hospital for Sick Children in Edinburgh. She reminded me of the many times she has highlighted behaviour as the biggest challenge in childhood epilepsy.  And apparently, we are just at the beginning. 

It's been a tough summer.  The rain hasn't helped, making it a challenge for most families to stay busy whilst the heavens continue to pour. Muir has assembled every jigsaw in his toy cupboard, over and over.  He has coloured over the same drawings.  He has made and re made brio tracks for his trains.  But he is bored and of course, he blames me.  After all, I am the Mum and everything in the end is always Mum's fault. 

Oddly, Muir has been reluctant to drink or sleep.  Some nights he is to be found playing with his toys until 5am in the morning, before he falls into bed and gives in to a few hours of sleep.  Exhausted by day, he is easily upset, often aggressive, with huge violent outbursts which take the form of kicking, slapping, head butting and biting.  He has not been my favourite child in recent weeks and thank goodness for his big brother Connor who has the physical strength to restrain him when required.  He has smashed crockery, broken chairs, chipped the toilet cistern and even forced me on one occasion to abandon my M&S groceries in the food hall and leave in floods of tears, humiliated by his aggressive behaviour towards me.  From the moment we arrived it was clear he didn't want to be there and no amount of distraction would stop him kicking me and throwing my groceries around the store. 

Ailsa decided to introduce melatonin again to help him sleep.  He was prescribed melatonin when he was 5 years old for about 3 years. It certainly helped then and I am hoping it will help on this occasion too.  My husband Jonny, who works abroad, flew home mid week to help me.  It was that bad.  

I have finally managed to get a Section 23 assessment for respite care in front of the local social services team.  That has taken me a year and now that his case has been reviewed by the panel it does look as though we might receive some support in the not too distant future, at long last.   In the meantime, I am delighted that he returns to school this week and life will be easier for us all.

Good news is the addition of our two new fundraisers, Karen and Carolyn.  I am so excited about the opportunities that lie ahead for us now.  New projects are under discussion and the details will be revealed very soon.  Media support over the summer has been beyond expectation and our work is really beginning to build some momentum. Uptake for the September Dinner Party has been most encouraging and we are hearing about fundraising initiatives on behalf of the Trust almost daily. 

Over the next few weeks I hope to settle the girls into their new roles.  We have so much for them to do.  And then my focus will be on Casino Royale and the pursuit of unique auction prizes.  It's been a good year so far.  I think it will end well. But for me, the real challenge for the time being, continues to be Muir.

Best wishes to all who read this,

Ann Maxwell

Trust Founder and Mother of Muir