Seizures... please can i have a hug and some support

[alfiesbabe]

DD, just turned 15, has recently had a couple of seizures. She didnt seem to have any warning, just slight wooziness, but totally passed out,and ended up in A and E. Obviously this will now be investigated. Each seizure was while she was on her period (don't know if that's relevant). I feel sick and anxious. She was a prem baby (IUGR) but otherwise healthy. There's a lot of ASD in the family (don't know if that's relevant either) and she has a cousin with severe autism who has had seizures. needmorecoffee, I know you've posted on this before, though I'm aware there are lots of types of epilepsy, and I've scrolled back through this section and found some other MNers who've been through a similar thing.
Right now I just need a hug and to be told I'm not the only one to feel like this. Thanks.

dd has epilepsy (fit free for a year )
The period is relevant as it was most likely what triggered it. dd always had some kind of trigger(and so does dh who also has epilepsy)
for dd it was excitemnt mainly. she is only 12 so awaiting to see if puberty will yet again change things.
Dd has cp i can cope with that. the epilepsy though has been the scariest. so you are not alone.

Thanks 2shoes - that's reassuring. I've googled to find out a bit more and stress can be a trigger - this was definitely relevant for dd as the first episode was shortly before moving house which she was very anxious about. Does your dd completely pass out? A big worry for me is dd has bumped her head both times because she seems to have so little warning of it coming. Is your dd on meds?

There is a type of seizure linked to hormones. Luckily its pretty easy to control.
But its a horrid thing to see your child go through.

thanks needmorecoffee. I've read a lot of your posts, you clearly have a lot to cope with but seem to have such a positive approach to life.
Hopefully it'll be something fairly easily controllable. It's a shit age for this to happen though - you just want your kids to be able to enjoy the teenage years and now she's got this to contend with. I don't want to wrap her up in cotton wool, but how do I let her have the freedom she needs if I'm worried about seizures? I'm worrying already about next week (I've been home this week - I'm a teacher on half term) - i know I'll get a call at work if it happens, but i'm 45 mins away which seems like forever

((Alfiesbabe))

God, I'm getting ahead of myself here.... but if the seizures are linked to stress /being under the weather/periods... how do we cope when we know she's 'at risk'? I mean, if she's not 100% well then I'm going to feel i ought to keep her off school which means DH or me staying home too. We're both teachers. How do other people manage? Obviously dd comes first, but we've never had to take time off before (kids always pretty healthy thus far). Just feel like I dont know how to cope with it all right now

epilepsy can be controlled so don't panic. dh 's is pretty much. his kicks of if he is stressed or bored(oh an long boozy weekends)
dd's fits changed. she didn't have many full body seizures. mainly ones just affecting her eyes and mouth.
She doesn't pass out. the problem I have found with epilepsy is that no 2 people I have met have the same fits.

Yeah - I always thought epilepsy was a specific thing, and was amazed to discover it's an umbrella term for literally dozens of different types of seizure.
I guess we'll learn to manage it - just feel so shit right now.

alfiesbabe. You inform the school and fill in a medical care plan so everyone knows what to do if she kicks off at school. If a seizure lasts less than 5 mins there's no need for A&E and ambulances etc etc. I'm guessing you'll see a neuro with her so can talk it out fully. She may need to have a bottle of Epistatus (buccal midazolan) avaialble to bring her out of a seizure if it goes on too long.
You will 'get used' to it unfortunately.
My dd is on daily meds as her epielpsy is triggered by her brain damage. She had some complex partials (child is not aware but the seizure is only in part of the brain) in Jan then this massive status epilepticus (non-convulsive) that lasted 3 hours last week. So we have midazolan as a 'rescue med'. I sleep with her as I'm petrifed of one kicking off in her sleep.
Get her a medic-alert bracelet (forgot the website) so if she is unconscious the docs will know that its epielpsy, not drugs or drink but she should be able to lead a full life. Although I wouldn't recommend drugs or drink for someone with epilepsy!
In the early weeks while you see a neuro or try a med I would take time off to be with her. It will give you a sense of the pattern. If she's anxious or 'feels' funny it might be an 'aura'. Some people get them. This is going to sound mumbo-jumbo-ish but dd 'feels' different to me just before a fit. Like her energy has changed.
Let us know how it goes with the school.

Thanks NMC. That's really helpful.Yes, we'll be seeing the consultant soon. She had an outpatient appt last month as a follow up to the first episode, but he didnt do much as one episode seemed inconclusive. Now she's had another one it's clear there's a pattern. It's interesting what you say about your gut feeling - I dont think it's mumbo jumbo at all. I feel very strongly that the house move was the trigger for the start of this (info on the internet explained how anyone can have a seizure, but we all have different thresholds). I also noticed dd was tired and a bit 'flat' the night before this one. And both siezures have been on the second day of her period. I guess the hospital will check all this out.