Another seizure last night -and I'm really anxious.

[Widemouthfrog]

Hi Everyone,

I introduced myself to this board earlier this week as I have a DS1, age 5, with ASD and epilepsy. He has only had 3 night time seizures so far since January, and he was started on tegrotol on Monday - tiny dose of 20mg 2X a day to be increased gradually.

At 5pm yesterday he fell asleep and had another seizure, which lasted a couple of minutes - fixed stare, shaking and smacking his mouth - nothing too concerning in itself. What worries me is that he would not wake up afterwards. I tried to rouse him several times throughout the evening and he just kept whining and pulling away. He did not open his eyes to look at me or attempt to talk. He finally woke up at 6am this morning 13 hours later.

He has always woken up shortly aftewards before. Am I overeacting? Was he just so exhausted that he needed to sleep through it?

I'm not used to this so I am not sure what is serious and what is not.

He seems ok this morning, if a little anxious, but that is fairly typical on a school day.

Hi Widemouthfrog

I've no real experience with epilepsy but didn't want to leave your thread unanswered. I know that having fits can be completely exhausting though. I'm glad he seemed ok today - i hope you are ok too

Sorry you had such a worrying time, and hope your DS feels OK today. I would call up your GP and/or your consultant via his secretary to ask about what is normal regarding waking up after a seizure, 13 hours does sound rather a long time.

Thanks for replying -I have made an appointment with the GP this afternoon. Should be fun - DS hates the GPs because we always have to wait. I can't get hold of the consultant until next week. Typical.

I know I am probably over-reacting, but my instinct tells me that I shouldn't ignore it.

could you do a phone appointment instead, so you only have to take DS in if GP thinks it's necessary?

TC - I agree this would be a very sensible option.

I aready asked if I could speak with the duty doctor, and I was told he wanted to see DS aswell. They did agree to a pm appointment, as DS is at school this morning, and Being AS I didn't want to take him out of school without preparing him.

I'm not sure they quite get what a big issue it is to keep DS in awaiting room - they are going to find out though.

I very nearly called the out of hours GP last night, but the prospect of dragging DS out unprepared in the middle of the night was almost as scary as his failure to wake up, so I stayed with him last night and adopted the wait and see approach. now I feel I may have done the wrong thing.

Treatment was prescribed by a neurologist -I have been given no info. He told me to look at the epilepsy action website for advice - but that isn't specific enough. I'm seeing the GP at 3pm and we'll take it from there. If it happens again I'll do as you say -call an ambulance. It is better safe than sorry. I'm kicking myself really, but my DH just seemed so unconcerned.

His paed is really helpful, but like everyone else getting hold of her is really difficult. She has already had to chase up the neurologists who failed to recall DS after his abnormal EEG. She was surprised when she saw me at a routine appointment for his ASD and she mentioned his tendency towards epilepsy, and I hadn't even been informed! Perhaps I'll leave her a message anyway. I'm feeling more confident to ask questions now others are sharing my concern. I'll let you know how I get on.

No-we had spiking activity in right temporal lobe. He has also had an MRI scan which was normal - the neurologist believes it is a tendency he has becasue his brain is wired differently due to his AS. Sorry to hear about yor DD.

I'm just off to collect DS from school - I hope he has had an ok morning.

Hope the appointment went OK.

Sorry for not responding sooner -I've been tied up at work and dealing with tantruming kids this am.
He had a lovely morning at school yesterday, and he actually played with some older boys at lunchtime (this is unheard of!). The GP was very nice, and called the paed and the children's hospital for advice. I was reassured that he was fine, but I was told that if this happens another time and I am at all worried, just call 999, as no-one will criticise me, especially as he is newly diagnosed and so young. He ran riot in the waiting room, but he was happy - not sure what the other patients made of his flapping and chattering, but I was quite amused.

He is very disruptive today (hence the late post) and I have been unable to get him to leave the house. He still seems very tired.
I think I am still a bit in denial that he really has epilepsy, but as the GP said his need to sleep so heavily is confirmation in itself that he had had another seizure.
Its a rough time for him, poor lad.