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Original poster

Ds been fitting

34 replies

roundthebend4 · 14/04/2010 19:57

Ok need some help advice handholding all 3

ds has been having small absences for a while but these have been increasing but Sunday ds had 2 full blown fits was admittered. But then allowed home Tuesday

Today he was fine in morning but fitted while we was on the train so were back in for obversation

ds did have EEG 18 months ago but this was clear but then they did struggle to get him to look at lights hence why till now not treated but there now talking of how to treat but am lost know nothing about this

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Original poster
roundthebend4 · 14/04/2010 20:56

Bump riven 2 shoes ?

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TotalChaos · 14/04/2010 21:07

riven goes to bed v early with her DD, so don't imagine she will be around till tomorrow now. I have no first hand experience of seizures, so will be more suitable for handholding than actual advice I'm afraid. Did they do an EEG when he was in this time? I assume that's the main investigation they do... Do they think it's epilepsy? I guess if they are talking about treatment they will be looking at trying him on medication....

Original poster
roundthebend4 · 14/04/2010 21:15

Yeah did wonder if missed her but. Handholding good right now

yes there all keep saying epilepsy they have sedated him because kept on fitting

I have no experiance of this and it's scaring living daylights out of me and wondering why now

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Original poster
roundthebend4 · 14/04/2010 21:16

Not done EEG this time as the fits been running into each other he's out of it now but can't rest

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TotalChaos · 14/04/2010 21:50

didn't realise they had been running into each other today, that must be very scary. Sorry I feel a bit like job's comforter, saying that sort of thing, but sorry you and he are having such a stressful time, and hope they can sort this out soon.

feelingbetter · 14/04/2010 21:59

What happened when you were admitted? Did they do another EEG or arrange one?

You need another one ASAP, can't see how they are going to treat him or even give a diagnosis without one

Has he been unwell? Just wondering why this big change/incease in activity now, IYKWIM.

It's horrible, I am sorry.
I hope they are able to resolve things quickly for you x

feelingbetter · 14/04/2010 22:06

That'll teach me to read properly (am v sleep deprived due to spasmy child - sorry)

Are you still in hospital now? Sorry, didn't read the bit about him being sedated - you have my sympathies, it is scary.

But what's important now, is that they get to the bottom of it (with an EEG!!!) and treat him accordingly.

How is he now? My DS is barely rousable after a seizure - can take him days to really recover, and he can be a grumpy little so and so after it too.

I hope you are all OK x

sc13 · 14/04/2010 22:22

Thinking of you and hoping he gets better very very soon

Original poster
roundthebend4 · 15/04/2010 00:13

Ty ds is completely out of it but the drug they given him has knocked the fits on the head for now

he is due to have one some point trouble we had acute care is Essex follow up is herts apparetly powers that be won't allow us to be followed up here
though as ds under Adddenbrooks and due MRI scan they was going ask them I think

Ds has defintley been going down hill last few weeks physically to so think some concern what's going on in his brain

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PipinJo · 15/04/2010 00:36

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Original poster
roundthebend4 · 15/04/2010 06:30

They have. Seen ds fit was waiting for us as ambulance arrived and kept fitting so there pretty certain are they likely to start treatment or will they wait to do EEG
It is acknowledged that ds has brain damage of some kind anyway so they been telling me if was pretty much not if he devlopef it but when

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TotalChaos · 15/04/2010 07:54

hope you got some sleep too, it all sounds very worrying, sorry that on top of it all you've got the the bureaucratic shite to deal with.

sarah293 · 15/04/2010 09:15

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Original poster
roundthebend4 · 15/04/2010 10:44

Ds is 4.9 were under neuro from Addenbrooks he feels global delay incorrect dx for ds that all his individual symptonds add up to bigger picture

Drs this morning are now. Going try get EEG done today and keep eye on ds mind that's if not swinging from trees with boredom
not sure how they gave it was. Pretty much shoved in corner by all the Drs around ds He was barely out one fit then into next just never seen him like that not normally one to panic but that went out the window

now just got to sit round wait but can't leave ds so no chance of getting drink or anything to eat

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sc13 · 15/04/2010 10:47

I'm so sorry about this - I hope they do something about it soon. Hugs

sarah293 · 15/04/2010 11:00

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Original poster
roundthebend4 · 15/04/2010 11:26

Nowhe bit more awake ye will panic if I leave him nurse are busy there's you g girl on ward with very obvious Sn nursers doing what can but mostly she's just lying there crying

mum be in sometime thisevening so will take chancegrab drink then But course the shop canteen be shut by then as of course none wants anything eat drink after 7

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sarah293 · 15/04/2010 11:52

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Original poster
roundthebend4 · 15/04/2010 14:07

I did parked him in his own chair and just told them I'm taking him to canteen end of and went !! Was that or keel over as not eaten anything in over 24 hrs

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sarah293 · 15/04/2010 16:52

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Original poster
roundthebend4 · 15/04/2010 18:03

There sending us to Addenbrooks tomorrow For emergency EEG and MRI scan ds had one small fit then few mins later had one lasting 15 minutes so they have sedated him again

Finding this so hard to deal with never saw before this weekend

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fanjoforthemammaries7850 · 15/04/2010 18:09

Sorry you are having such a rough time. Hope you get some answers soon.

feelingbetter · 15/04/2010 21:46

GOOD! re EEG & MRI - it must be done asap to treat him appropriately.

I'm sorry this is happening and things are so shit Fucking epilepsy.

Also sorry the ward is crap. I know exactly how you feel, I daren't leave DS when he's fitting - there just isn't the appropriate level of care or staffing

I hope you know more soon. It was a case of when not if for DS and his epilepsy, IS & LGS and to be honest, watching and waiting is so much more difficult than dealing with it when you know what's there.
It's horrible and terrifying, but when they find out what is going on and how to help, you will deal with it and, in time, it will become a nornal part of life. When my DS is having a good day, it seems as if there is something wrong coz he's not spasming/seizuring/absent etc .

Doesn't mean you're not allowed to hate it though.

Keep us up to date.
Thinking of you all x

Original poster
roundthebend4 · 16/04/2010 03:35

Just heard them call on the little girl with Sn they tried resus but not worked .
Had only just met mum dad and her sisters today and we got on well lot in common .there in now but how you tell them so sorry and makes you realise just how precious life is

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Al1son · 16/04/2010 07:26

Oh how very sad.

Especially sad that she spent so much time crying.

It must be hard for you too, stuck there watching and listening because there's little else you can do.

I hope you get some answers today and they can sort ds out and get you both home.