More of a WWYD really but really need some outside help on this one.
I posted recently that DS1 (aged 4) collapsed, with his eyes rolled up and fixed, and had a seizure (around noon) on the road outside our home on Christmas Eve. There was no underlying health reason for this seizure. (We called 999 and took him to A&E)
However, this is after 4 years of similar nighttime 'episodes' (about once every 3 nights) which have been dismissed by 2 consultants as nothing.
The third consultant (an actual Epilepsy one this time) we saw last year actually took time to test him (EEG, MRI and two ECGs) which all came back normal. He also saw footage of DS seizuring and agreed that it was something but felt that it would be more harmful than beneficial to label him as epileptic at that point. His reasons being that DS is bright, tall and physically healthy plus the seizures were only nocturnal so therefore unlikely to be harmful and they are in themselves very brief. They tend to be over in 10-15 seconds.DS has never hurt himself and just goes back to sleep afterwards.
The consultant made a routine appointment for next Nov and told us we didn't have anything to worry about.
Now this new daytime seizure has happened, we are really upset. It was totally identical to the night ones so clearly is epilepsy of some sort. I have cried every day since it happened. It totally changes things as a daytime seizure can be really dangerous.
I imagine that we will be offered the chance to medicate our son to try to prevent further seizures. Remember this is not really a first seizure but more like a 400th - it's just that this one happened during the day.
It seems like medicating is down to the parents ultimately in cases like this. If we medicate, it will stop him hurting himself if he blacks out during the day again but then there is the risk of side effects from the drugs. DS will be starting school in Sept. I hate the thought of him hurting himself and coming round in a strange new environment but is it worth drugging him for?
If anyone's child has (I suppose I could say mild) epilepsy, with no other health issues, could you tell me what you have chosen to do in these circumstances.
I was going to post on an epilepsy forum but then thought that probably the people who go on those type of forums are people whose kids are having problems. I am assuming that there are people out there who have made this type of decision for their child and then are merrily getting on with their lives.
Any help/advice would be gratefully appreciated. as you can imagine, this is a hideous decision to have to make and we are extremely upset.