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"

I don't want this to go unanswered. I have no knowledge of the condition you have described but if you are worried then take her in, regardless of how serious it is. x

How difficult for you.

It's a tricky one. If you are worried I would take her, I also think they would admit her.

Don't feel bad at all about going because you don't feel it's life threatening, I feel you would be perfectly justified in going.

Didn't like to see you unanswered, have no experience of your DD's condition, or advice really, I wouldn't dare. But sending you a hug and my very, very best wishes.
I hope someone can find out what's wrong and a way to make her more comfortable soon.
xxx

I'd take her. Hope she is OK x

It is 100% your call. You know her best, so if you're worried, go to A&E. If there is nothing wrong, you'll have had your mind put at rest. If there is a problem, it can be dealt with.

What I can yell you is, night time doesn't mean locum time, it'll almost always be one of the regular paeds teams on call. They work nights too. The consultant won't be there, but will be available via bleep if.needed. If there happened to be a locum, It's likely to be a doctor who has just finished one job and is about to start another- everyone moves in August, but some jobs start in September or even October- so is picking up extra shifts at the hospital they're finishing at. It's a good way to make extra cash.

Also, no one will think you're overreacting because its not life threatening. It doesn't have to be to need A&E attention. People like you and your DD are the reason I stay in a job that necessitates being abused by drunk people!

I dontthink they'd send people to look at her out if curiosity/interest though

There should be a Paediatrician on call.

*out of

I think you should take her in, they wont think that you are wasting their time.
I hope your DD (and you) has a more settled night once she has been seen.

I agree- if you're concerned I'd take her now, mums know best abothat heir children and if you think she's not right, then that instinct is invaluable to her wellbeing.

If she's had a sudden increase in episodes it could be the early signs of infection, or could be that she's not really coming out of one episode/seizure before the next, in which case it does need specialist treatment.

Sounds like you are doing an amazing job :), let us know how you get on.

As a paediatrician - on the one hand it is very useful when a diagnosis is new and recent to have the patient in on the ward overnight during a bad spell to carefully monitor and document exactly what they do when they are symptomatic - it can be really helpful when working out exactly what's going on and working out a management plan. On the other hand, it's always nicer to sleep in your own bed! You're very unlikely to get an EEG overnight, the facilities generally aren't there. If I was at work now and you came in I would probably, unless your DD is really struggling and not coping with the symptoms, keep her in the ward, make sure we made a note of exactly what she was doing then speak to her consultant in the morning and make a plan. If she was getting very distressed by the symptoms I'd try some gentle medication to relax her and see if that helped. I would keep her in if you were worried enough to bring her in at 2am purely because I would rather the nurses who are paid to be up all night sit up all night looking after her in hospital than you sit awake all night at home! If you're up now you are worried enough, and she is poorly enough, that she justifies that!
As for people coming to see her cos she is interesting... when we have patients with unusual problems, yes, I admit we often make sure the more junior doctors have had a chance to meet the patient - partially to help with their future learning but also to make sure if this patient comes in again they know who she is and know what treatment she needs. We would never NEVER keep someone in hospital who doesn't need to be there just so people cam come look at her and if we want a patient to help us with an actual teaching session for juniors we would only do that with their permission.but when you have an unusual condition it is helpful that any doctor who may be on duty at 2am knows you because then when you come in at 2am they know how to help you

Ditto here OP. Would it be good to take her in during an episode so they (doctors etc) can see what it is like first-hand?

Must be so, so difficult, it sounds like you are doing a great job.

Slight x-post with Sally there who (obviously) knows bucket loads more than me

Hi Everyone - Thank you so much for all your kind comments and reasurance.
And especially thank you to the medical professionals who posted. You do wonderful jobs and i'm thankful for people like you every day. as i'm waiting to see if Ocupational therapy turn up today
In the end i phoned the on call pead at about 3am & had a good chat about what was going on and if she needed to come in, in the end i suggested instead of taking her in could i film her instead and email to her consultant in the morning. Seeing as he is based at John Radcliffe it's not like he'd have seen her today anyway, but it's good to keep him informed of new developments.
They were quite happy with this. DD finally settled down about what 5am this morning. She's still asleep now!
The world and his wife have taken it apon them selfs to phone me this morning all before 9.30am 3 doctors, the wheel chair service, and all my friends wanting to know how DD this morning! Right now i would like to sleep for a week!!

Bless you OP. I'm glad that she's settled now, what a worry for you. Early to bed tonight for you xx

Glad she is settled now op. sleepy day for you all I hope xx

I had never heard of this.

Hope you have a better day. x

Annnd we're finally awake. Off to see the quacks at the peads unit now as she's even more unstable on her feet yet again today, so bracing myself for the "next step of progression" speech from the consultant again.hey ho, Thus is life i suppose.

Just wanted to say thank you again for all your supportive messages, really makes a difference in the wee small hours when you're on your own & can hardly ring family & friends for hand holding.

Chocolatey. I was curious about the condition so looked at a previous post of yours where you explained how it came about. I think you sound like an amazingly strong woman! x

Thank you but, it's just part of being a parent i think... you bury yourself in chocolate and wine when no one is looking cope. Don't feel it today though having a serious wobble, probably better off googling the condition to understand it tho as i don't understand most of it myself lol (even googles information is limited!)

Have the doctors not explained it to you?

I don't think they're really sure themselfs yet. We're still undergoing testing. Obviously we know she has cerebellar atrophy, but we don't know what this will mean for DD. The symptoms are coming on pretty quickly at the moment, and we don't know if her cerebellum will continue to shrink, what further symptoms this will cause, and at what rate it will happen. It's not something they can treat, and not something seen very often in children, or adults for that matter. Obviously it would be nice to know why her cerebellum has suddenly felt the need to shirnk, but it may well come down to it's happening and we just don't know why, as we've had pretty extensive testing with nada to show.
We've got a few more tests in a few weeks, another MRI & muscule biopsy.If the biopsy don't show anything i think it will be time to call it a day and just monitor the rate of progression with regular MRI scans, as the tests are pretty invasive (bone marrow biopsys, lumbar punctures and the like) this will be her 9th anasthetic this year, with 3 last year as well!

How does your daughter cope with it?

This must be so absolutely horrendous for you I wish I had a magic wand.