Epilepsy how many fits?

[buzylizy]

dd has had 3 fits this week. Not big ones. One only lasted 10secs the others a 90sec. Last week she had 3 as well. This tells me she is either coming down with something or has put on weight and her medicine needs upping.
What I wanted to ask is this a lot of fits to have? dd's consultant is aiming for her to have none. i think this is unlikely and the only way to do it is to give her so many drugs she would loose her spark. As I will have to speak to her consultant next week I thought It would help if I had idea about this.

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Sorry, I was going to post before but as usual what I had to add was just waffle.

will add it now !!! lol

I wouldn't have thought 3 was that many, but then again, 90 seconds would feel like a life time if I was watching Ellie have a seizure (she hasn't had them for a while now, but we watch and wait anxiously with each twitch!)

I have known Children to have much more than 3

So no, I don't think 3 in a week is much at all, but then I'm not a Paed!!!

I suppose it depends what they are doing, if anything, to her development. If you don't don't think they are having an effect on her, then as you said, you don't want her to lose her spark

It all depends, doesn't it? Epilepsy is so individual. If Helena is poorly controlled she can have 80+ seizures of 2-3 minutes each day. At the moment she has none (well, none that you can see) though this level of control can't last.

I think (now this is just from lurking on the NSE's forum) that "none" and "one or two a year" is more or less the same thing. 3 a week is bearable but most consultants would aim for better control unless you had one of the "difficult" types of E or unless they were just absences or similar. I think for an idiopathic childhood E they would expect to be able to get it to the more-or-less-none level.

The thing you have to watch out for is that the number of seizures can creep up on you as the brain gets more "practice" at having seizures iyswim. We all resist the meds as far as we can - but there's a down side of undermedicating too.

If you think the meds are affecting her personality and alertness, it's worth discussing alternates. I don't know what she's on atm but everyone's tolerance to side-effects of different meds is different - so it's possible she could have better control without losing her spark as you say on something new.

i agree with r3d,

its such an indivdual condition. Harrys condition means that he has up to 150 per day, of anything from 90 secs to 4 mins, and he often goes from one to another without a break. This is the best control we will ever get for him and the consultant is happy for him to be at home at this level. It may be different for your daughter though and only her consultant can tell you that. If your instinct is that she needs her meds upping then i would go with that.

I should have said in my message she is on Lamotorgine 410 mg a day. This has worked really well and she has had no side affects, After a fit she is just dopey for a while. I will be asking the consultant about upping the med.As even another 10mg can make the difference. The fits don't seem to be affecting her metal ability. I have been told that as she is coming up to pubety we have to expect her fits to change.
It is weird but most times when she is fitting she is very aware of what is going on arround her.The consultant has said this is where the meds are contorlling the fits.
She only sleeps after a fit if we have to give her paraldahyde(if a fit lasts more than 3min this time is going to be changed to 5min)

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She has had yet another one. So I am ringing consultant monday. Must up her meds.

Yes, I think that's sensible.

I had heard that seizure activity increases around puberty - don't know whether that's because of changes in the brain or just all those hormones sloshing around! So I'd regard it as a "blip" rather than a "worsening" of her condition.

I have heard that Lamotrigine is very good stuff. Some people get side effects, but if you don't it's wonderful. We have never tried it with Helena because it takes so long to work up to safe dose and we really have far too many seizures to cope in the meantime - already on 3 meds each day, 4 a day for the 6 months or whatever it would take to get a working dose of Lamotrigine on board would be a bit hairy.

Again, I'd agree with your consultant that the change in the type of seizure was a sign of control. With Helena, most of the meds reduce severity rather than reduce frequency. So she'll go from Tonic Clonic to Complex Partial motor, to Complex partial, to Simple Partial, to subclinical as we get more and more control. Seizures where you lose consciousness involve more of the brain than ones where you are still conscious and can remember afterwards. So yes, it's a good thing that she is aware of what is going on - though it may make it more disturbing for her, I'm afraid.

Hope your conversation with your consultant goes well.

I must admit I didn't understand all the terms you used! Dd's fits are mainly facial mouth,eyes and dribble although one arm makes strange movements. she very rarely has had a fit which affects her whole body. I am loath to change her meds as O hate the thought of the change over and whet might happen while you are going through it.

rang consultant 3 times but she still hasn't rung back!!!!

I will keep my fingers crossed for you. It's funny dd has had epilpsy for abou 3/4 years now and dh has it but I still feel such a novice!!

I know what you mean. Dh's are so different from dd's. His are always the same(he only has absences now) But hers change although most of the time are just mouth and eyes.

finaly spoke to the consultant she didn't seem to worried so we are just upping her meds and seeing how it goes.

Hi, i hope the change in meds works for you. we have tried epilim and tegratol. Good luck

My dh has been on tegrotel for as long as he can remember and it works well. I have a feeling dd's problems are due to puberty. as I have just had an embarrassing note from the nurse