Daughter had a seizure

[bobalinga]

last night. Its the first one in 6 months. Her hospital paed is on holiday (naturally) so was debating whether there'd be any point getting a GP to give her a once over. GP#s are usually useless with SN. She's fine this morning and it was probablya breakthrough caused by her cough as she's usually well controlled and is on 2 meds.
We did call an ambulance in case it was a status seizure but she came out of it by herself. This meant answering pointless ambulance questions and having to say, no, she doesn't walk.speak etc etc as she has quad cerebral palsy as well.
Feeling tired and fraught this morning.

sorry to hear this. so scarey isn't. The ambulance people got used to us in the end.
Weight gain normaly upsets the meds so like Bethron said get it checked. Also with dd a tempature can set her off.

Sorry to hear about your DD.
My DD also had another seizure this morning, had one about a month ago and then before that it had been 8 months seizure free. I think the hardest part is when it has been so long since the last seizure, you start to think maybe she won't have them again.

Ah yes. Pointless ambulance questions. I just say "she-has-classical-galactosaemia-and-hemimegalencephaly" and wait for them to realise that they have no idea how to spell any of that .

Sorry to hear about the seizure - there's definitely something going around, school think DD1 had six at school a couple of days ago, which is a bit excessive imo. She's come out in buckets of snot but the seizures have died down again, hope it's the same for you.

I don't bother with the GP myself, I have to say. Like you, I tend to keep in close email contact with Neuro/paed, and every now and then if I pop into the GP for something else (eg to check if she has one of her recurring ear infections) I'll mention the current dosages in passing for the file.

Took her to the GP and she has a red raw throat and tonsillitis and a temperature. So thats probably what triggered the seizure. I feel better knowing a breakthrough was triggered by illness rather than her epilepsy getting worse!
GP gave us rectal diazepam, said call an ambulance after 2 mins (!!) and has reffered her to a paediatric neuro so we can discuss long term implications of epilepsy. Up until now her community paed has been treating her but I want a specialist! No disrespect to her paed as he cured her Infantile Spasms so he is Mr Wonderful.
Saud to the GP 'so no driving then....' and he started with 'well, with her eyesight and CP..' before he realised I was having him on
Gonna get her weighed tomorrow in case she's gained weight too. We've already lowered her vigabatrin by 100 mg (she was on 1100 mg daily) so wont be doing anymore lowering for a while. Her lamotrigine is at full dose (50 mg - about 5 mg per kilo)
Tonight I'm going to give her some temazepan syrup as we all need some sleep plus it will stop any potential seizures.

has she had rectal diazapan in the past?
bet you were relieved to find the reason.iynwim

Never done rectal diazepam. She's had IV lorazepam on the last 2 status seizures she had.
I asked the GP for the mouth wafer thingies but he didn't know what they were called.

Bobalinga. its a relief to knoqw that there was a reason for the seizure. My son has Is and was seizure free for a while then had a few breakthrough seizures and were now sf again since the 10th Feb ( god, is that all feels like longer!)

you mention the syrup, is that because C doesnt sleep well. Ive read that Kids with Is cant achieve REM sleep, is that right? I ask becasue my son has been a nightmre for the past few weeks and Im thinking abut speaking to the doc about it but i really dont want to give him more meds (although at 3 am i have a different view to that!). Hes on 1000 mg daily of vig and 240 daily of epilim.

Any advice?

She has temazepam syrup cos she is terrible at sleeping but thats cos of her CP which gives her muscle spasms. You can only use it 3 times a week though.
She's still poorly and has just vomitted all over the floor in the middle of her drugs so we are repeating some. Seems ot be the penicillin that made her vom. I tasted it and it's vile!
I'm all nervous that she might seize again :-(

bobalinga- Hope DD is getting better

Seems chirpier this morning but wouldn't co-operate with the OT. She just went floppy and if you didn't kow her you'd assume she wasn't capable of anything! She wouldn't even look at the woman, just me, with small half smiles. Little horror!
So we stretched her. Seeing as she was all relaxed....
Leaving off the penicillin as the first dose yesterday was a disaster. DD hates taking meds anyhow but last night I got 5ml's vigabatrin into her, then 5 mls lamotrigine, then 1 ml calpol then 1 ml temazepan. Then the penicillin was 5 ml's and she started gagging. Managed to grab a cushion before she did a spectacular vom of all meds plus dinner. All over my hands, her hair, the cushion. DH stood there being useless while I'm trying to stop the sick getting onto the carpet.
Argh.
So this evening we're startingthe meds at 6pm. Means we can leave a good hour between each so if she does throw up we don't have to give all of them again (there's that 20 min rule for meds and vomitting)
She's had a few tensing episodes which I'm not sure are seizures or just her CP. The epilepsy nurse hasn't got back to me yet. Grrrr. Last time she had a status seizure she tensed for a couple of days afterwards but no-one was sure what it was.
Did try and peer downher throat to seee how her tonsils looked but everytime I tried she clamped her jaw shut and did closedmouth smiles. Sigh