Saturday, 25 June 2011

Seizures, Seizures, Seizures

Cameron is Epileptic. Ever since that fateful seizure on the side of the road fifteen years ago we have lived with Cameron's epilepsy and over the years his seizures have changed.

While Cameron was sick with Meningitis his seizures were Generalized/Grand Mal/Tonic Clonic, whatever you want to call them - they involved his whole body jerking violently and required medication to stop them. It was scary to see our little babies body jerking violently and we felt extremely helpless because we couldn't help him.

When those large seizures settled down Cameron then had partial/petit mal/localized seizures. In other words, individual parts of his body would jerk. Some seizures were small and subtle such as a hand jerking, other seizures were impossible to miss. Quite often his hand would jerk up and down at the wrist with his hand clenched. Clenching was an indicator that he was going to start. His fingers would curl in and then the hand would start to jerk. You could try to uncurl the fingers but as soon as you let go they would snap back. Some seizures were extremely subtle from a visual perspective, you couldn't see any body part moving but Cameron wasn't with us.

I believe when Cameron was young he knew he was going to have some of his seizures. He would sometimes give me an accusing glare and then his eyes would roll back and he'd be gone. There was nothing I could do but watch it happen. I'd sit and comfort him, try and uncurl his fingers to send the signal to his brain that it needed to stop and I'd keep him safe.

When Cameron was young his seizures would last from a few minutes up to twenty minutes. Sometimes they wouldn't stop and we'd have to put him in the car and go to the emergency ward at the children's hospital. If we went to the hospital we always ended up being admitted so the doctors could find a medication mix that would stabilize him again.

Over the years Cameron has gone twelve hours between seizures and he has gone two years. At about fives years of age his seizures started to increase in severity again moving back to whole body seizures. He had seizures at school, in the pool, at home and in bed. Predominantly his seizures happened at night or early morning.

Over the past six years Cameron has had a major seizure every three to four months up until twelve months ago. These seizures always result in an ambulance dash to hospital, long hours spent in emergency while they save his life and then a three to four day stay in hospital while he comes back to us and stabilizes. He then spends one to two weeks at home recuperating and the family takes about a month to settle back down and return to what we call normal.

We associate certain noises with Cameron's seizures and we live on constant alert for those sounds. Any sound of banging, especially rhythmical banging sends us dashing through the house. A sucking, gurgling sound has me awake and dashing through the house in the middle of the night. But to be honest any noise which we hear and can not identify sends us investigating to make sure Cameron is alright because we've had too many close calls but that's another blog post.

In a couple of weeks it will be twelve months since Cameron's last seizure and we are delighted that he has gone so long between seizures. We are celebrating his good health and the achievements he has made because of the break his brain has had from constant disruption but even our friends are touching wood when we mention that it has been almost twelve months.

Wondering when Cameron's next seizure will happen is becoming increasingly stressful because it is like the ultimate game of SURPRISE! And what social event is he going to make us miss this time???????

3 comments:

  1. Is there any chance he's over it? I have a friend who's epileptic and she hasn't had a seizure for...hmmm...I think eleven years now. I can understand your constant worry, though, waiting... waiting... waiting for the next one.

    ReplyDelete
  2. Maybe if we just don't plan anything this good run will continue:P Honestly, I would rather have him free of seizures than have any social event no matter how good <3

    ReplyDelete
  3. Sharon - that is something I have never contemplated. Because his brain was damaged I've always presumed he will have epilepsy for life. Interesting thought and another question to ask his epileptologist when we see her next.

    Vicki - Clearly we haven't done anything exciting enough in the last 12 months to warrant him cancelling it. We never did get our anniversary dinner.

    ReplyDelete