Epilepsy (long)

[fattybumbum]

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.

My DD has other health issues, was dxd at 9.1yo, and wasn't medicated until July this yr (at 11.4yo). There ARE side effects with the medication, and she has had seizures at school occasionally, but if you talk to the class teacher, TA and SenCo at the school, you can discuss a treatment plan with them. Originally I made the decision not to medicate, as I also have epilepsy, and I know firsthand what the side effects of the medications are like, but she started having more daytime seizures as opposed to 'just' nocturnals, and if they are unmedicated, it can interfere with their ability to learn as they can frquently be having 'excess electrical activity' in their brain without having a 'full' seizure, and I figured it would be better for her educationally to be medicated. As an adult with epilepsy, I know that it can be very difficult to balance 'quality of life' with medication, in respect of not enough meds=more seizures, too much meds=too 'zombified' (sorry, my personal explanation of it!!), but I felt it was better for her right now. Let us know what you decide. Oh, and for having to deal with this. AND I DON'T CARE if it's unMN'y to do that. Seriously, book a meeting with his class teacher, TA and SenCo to discuss what to do if he has a seizure at school. They WILL have come across this before, your DS isn't alone. And it's not ALL bad. Have you thought about applying for DLA?

(believe it or not, my DD was in a class with another girl with epilepsy, it's NOT that unusual, there's lots of us...)

Our son started having seizures at 15 months old although his started as daytime but now can happen day or night.
He was diagnosed at 19 months old but will add all his mri's and eegs have come back clear as a seizure has never been recorded.
I think it was the fact he was having large clusters of seizures every 4 weeks which each time the amount of seizures in each cluster were rising that he was diagnosed relatively quickly.
Ds has been on a few different meds and is currently on epilim and lamotrigine which finally seems to be keeping seizures under control.
Ds does have developement delays due to the epilepsy.
It is trial and error with epilepsy meds we do see tiredness and bad behaviour when meds are increased. Ds had a balance problem when on tegretol and epilim which went when the tegretol was decreased and taken off it.
He is now on epilim and lamotrigine. We now know he can't tolerate an increase of more than 5mg in a day of the lamotrigine. We are hoping he will be slowly taken off the epilim next month when we see the neurologist.
Have you see a neurologist as we had to push to get referred.
Also I would say post on epilepsy forums because I have found them to be a great place to get information.
It is

Fattybumbum - I'm shattered and off to bed but will post tomorrow! We had similar issues with DS to start with but things have spiralled now

Snowybun - would also like to talk lamtrigine with you (whippee, there's a topic for a Sunday night!!!) and especially increasing as we are having a dreadful time each time we try to increase DS on his. End up with tonic clonics during the day which is not his normal seizure type then neuro says "Oh put him on clobazam for a week to help things" which then ends up him losing the plot completely and being an out of control manic child.

Like today Which is why I am off to bed as I predict another dreadful night for him like last night

DD1 was first identified as having SN's because she suddenly started falling over for no reason at preschool. She has never had a tonic-clonic seizure, as yet, but had 3 'drop attacks' in the space of one morning, then another on the walk home from preschool when she was 2.9.

Our consultant (after an overnight stay in hospital, and it becoming clear that she had other delays in development) assessed her and felt that at that point he didn't want to rush to medicate. However, after an EEG in the January (aged 3.1), he phoned us to say that he felt medication was the best option.

She is now on Epilim. We find that as long as the epilim is at the highest recommended dose for her weight, she stops the drop attacks. We saw the consultant on Dec 9th, and he didn't up her epilim, but said that if she dropped, put her up 0.5ml. 2 weeks later, she had her first drop attack since January '09.

For us, the key is that we don't want her drop attacks to progress, or turn into more prolonged seizures. She is already severely delayed in her development, and she can't afford to lose any more opportunities to learn.

She does still have absences, although the consultant doesn't seem too worried about them.

Life is a balancing act. We make decisions all the time about 'lesser evils'. I'd rather be doing something that I can change my mind on, than not doing something and risking a prolonged seizure (or 10).

Do ask lots of questions though.

Thanks for all your replies. We saw the consultant today and he is putting DS on Epilim. He made me feel a lot better by saying that there was a high chance that he would outgrow them (apparently 50% of children do). Also he said that going on drugs often seemed to 'cure' them of epilepsy but they don't know why. He said that nocturnal seizures were dangerous so that was another reason to take meds.

Am a bit scared due to the side effects but I guess we have to press forwards.

I feel sad that today my lovely child has been officially labelled as epileptic. I haven't sat down with him and explained it fully yet but will do before he starts his medicine.

Jesus, parenting is not easy is it?