National Epilepsy Week - Our Story

Sharing my story -

Almost 7 months ago now James had his first seizure.  November 15th 3.30pm, (the day before Becky's 11th birthday).

I remember every word, every movement, from first realising that something was wrong, to then eventually realising that he was actually OK (as in not dead, which is what I thought he was - for about 30 seconds, doesn't seem like a long time, but it felt like an eternity).

We were out in the car, in Torquay, thankfully, a few minutes away from the hospital.  I had never seen anyone have a seizure before, and did not have a clue what was happening. I remember Becky screaming, Mike trying to drive and shouting to James, driving on pavements, through red lights. 

I remember shouting to Mike that I wanted to get out of the car with James, who was by this time,what I thought was unconscious, maybe even dead.  For some reason I thought that it would be best if I stood on the side of the road, holding James, and shouted for help. Mike had the common sense to drive to the hospital.

I raced in with an unconscious James, screamed at the nurses to help me, they took him calmly, checked him, said he was OK, then I could see that he was breathing.  Meanwhile the children were stood holding each other in the doorway, crying, and Mike was almost banging down the door because it had locked behind the kids and he couldn't get in.
It turned out that we were actually not in the main A&;E department, that was just up the road, and this department should have closed half an hour ago, but they were running late - Thank God.

After being told that he had had a seizure, we were taken by ambulance to A & E,  James was OK, was snoring away.

Then all the tests began, question after question, how long did the seizure last, what did he do with his arms and legs etc etc -  couldn't really remember, everything happened so quickly.
My parents arrived from Exeter, which was a big relief, looking confused and scared, not sure what was happening, I couldn't really tell them for sure.

A nurse, very nice, told us that lots and lots of children had febrile convulsions, usually because of a high temperature, but his temperature was normal, she also said that if he should have another one, they would test him for Epilepsy.  Both Mike and I looked at each other, and both said there is no way it could be that - both, I am ashamed to say, totally ignorant about the facts about Epilepsy.

James woke up and was his usual boisterous self, pleased that his Grandparents were there, all seemed OK, we were hopeful that it was just a one off, until 8.01pm that evening, when he had another one.

Lumbar puncture tests followed, such a terrible memory of that, but the staff were absolutely brilliant.

They sent us home after the tests came back OK, and said he was fine.All this on Becky's birthday.

Four days later, he had another one, called an ambulance, did all the right things, specialist said it was probably Epilepsy.

I still didn't think that it was.  Three whole weeks followed, kind of back to normal, James had an ear infection, and I was so pleased, as I was told that this could sometimes cause seizures, I remember thinking that I was so right, and the Doctor was wrong, he hasn't got Epilepsy, it was just a bloody ear infection, that they didn't pick up on.

Three weeks to the day of his last seizure, 7.31am, he had another, this time he turned blue.  This time the same Doctor looked at me and said "Mrs Martin, your son DOES have Epilepsy".  Then he started his meds. Our lives had changed.

If anyone said to me at the time "it will get easier" I wanted to punch them, what did they know.  It has got easier, but this is down to the fact that his medication is working and his last seizure was just over three months ago. But we are still scared, for him and for us.

It wasn't easy, and on behalf of all the parents out there with children with Epilepsy, please try and understand, it will never be easy.  We need your support, not to be ignored,  for you to ask how our children are doing, not to pretend it isn't happening.  If you knew of a child who had broken his leg, when you saw them you would ask them how there were, or ask their parents how they are doing, why is it so hard to ask about how a child is who has Epilepsy. Maybe you are embarrassed, but what we are going through is a trillion times worse than your embarrassment.

If you know someone who is affected by Epilepsy, young or old, help them in any way you can, drop them a line, write a note, please don't ignore it.

 My son has Epilepsy, YOU cant catch it, YOU can talk about it - and YOU can be more aware of it.

National Epilepsy Week - please don't be ignorant.