Should i give in and take dd to A&E?

[chocolatecakeystuff]

Ok - DD 8 has been recently diagnosed with Cerebellar atrophy, symptoms are coming on thick and fast at the moment, considering 18 months ago she was pretty healthy and "normal"

She has "episopdes" of fitting/ fainting which they still can't quite work out.
Anyway, she went to bed late tonight at about 8.30 since then she's been tossing and turning in her sleep, she's had 4 episodes already tonight, which in itself isn't uncommon. But she's not right tonight at all, she's not awake, but not asleep either if you see what i mean, and is very "shakey" (fasiciculation) or however you spell it, which is unusual during her sleep normally it's a waking symptom when she's having a particulaticaly bad day.
No temp or anything (these episodes tend to happen when she's a bit under the weather) even something as small as a comon cold tends to put us in hospital for a few days.

I can't decide weather to give the consultant a call in the morning and explain what's happened, or bite the bullet and take her in now.
Normally when these things happen it's during the day and i call through to the consulants office (he's based at a hospital some 3 hours away) and they arrange for us to go straight to the peads assement unit at a local hospital.
As it stands i'd have to take her in via A&E and I know it's not life threatening so it's not something i'd really like to do, but at the same time the peads really need to see whats happening, and would probably want to do "something" normally along the lines of an EEG & ECG
Also because it's such a rare condition & the middle of the night, we'd end up with some locum who has never heard of the condition and as silly as it sounds, i'm sure they keep her in and send more people to look at her just so they can get a look at something "interesting"

haha god the amount of times i've said i wish i had a magic wand! Life is just so unfair sometimes.

She actually copes really well, she's such a happy little girl can't help but smile. We have the odd day when she has a bit of a cry because she wants to be like her friends, and gets frustrated with things she used to be able to do but now can't manage on her own (getting dressed is a biggie for her) she's very lucky because she's got a great group of friends at school, which i think really helps as she doesn't get picked on, and gets included in everything.

Tbh i don't think she fully comprehends exactly whats happening to her, and doesn't seem to remeber before she was so wobbly, which i guess is a blessing in disguise.

That's great that she can still go to school, I wasn't sure.

(oops crying)

Chocolate, as the mum of child with complex disabilities, I would suggest that it might be worth asking your ds's consultant to arrange for you to have "open access" to the local paediatric assessment unit so that if you are worried you can go straight there without having to ring consultants or go through a&e.

Thanks starfish will ask her consultant next time i speak to him, sounds like a good idea, Maybe even just a direct number to the assesment unit might do, just so they can document anything, and advise if i should bring her in, It's so difficult to judge sometimes if they would want to see her or if i should just give them a call with new symptoms, We see neuro consultant once a month, but talk on the phone usually weekly/ fortnightly (last week seemed to be every day as arranging to see different services)

She still goes to school, just about although i have been advised to start looking at special needs schools within the next 12 - 18 months depending on how her condition progresses. I hate the unknown! It's so fustrating not knowing where we'll stand in the next 6 months let alone 6 years!!!

We've got the wheel chair service coming round at 8am tomorrow so i suppose i should at least try to get a few hours sleep tonight. Thank you all for all your kind words and advice.