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Sleep deprived EEG

29 replies

fanjoforthemammaries7850 · 22/09/2009 18:49

Just wondered if anyone has had a child have one of these?

My DD's language and speech have really gone downhill quite alarmingly in the last few weeks. As she is quite old for an autistic regression and it's ONLY her speech which has regressed she is to have one of these to check for epilepsy/Landau Kleffner Syndrome.

It doesn't sound like much fun

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r3dh3d · 22/09/2009 20:04

A few, yes.

They're OK. I mean, yes your DD will be tired and a bit grumpy. But they are FAR more effective at detecting stuff than the waking ones, so well worth it.

The EEG itself is painless and no trouble. The difficult bit is getting your LO to stay still for the (often longer) process of gluing the twenty-something electrodes into their precise positions. They don't actually use glue, btw, not for these short-term EEGs. It's more like a sticky version of the goo they use for ultrasounds.

fanjoforthemammaries7850 · 22/09/2009 20:29

Thanks, that is reassuring!

She won't stay still for 2 seconds at the moment so the gluing WILL be tricky!!

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fatzak · 23/09/2009 22:20

What time are you booked in for? When DS had his, it was meant to be at 3.00pm Thankfully they changed it to the morning slot - quite how we were meant to keep him awake after getting him up at 3.00am I don't know! It was fine - DS just curled up and went to sleep which is very unlike him!!

fanjoforthemammaries7850 · 24/09/2009 08:19

We aren't booked in yet, she has been put on list waiting for "urgent" one so I think they are waiting for a space to just slot her into!!!!

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sarah293 · 24/09/2009 14:37

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fanjoforthemammaries7850 · 24/09/2009 17:05

Thanks.

Sadly she is only 2.11 so hadn't learned even to speak much, although she was reading letters and things before this happened.

I keep thinking it can't be LKS as it is so rare but it really does fit.

Still not got date for EEG.

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sarah293 · 24/09/2009 17:18

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sarah293 · 24/09/2009 17:23

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fanjoforthemammaries7850 · 24/09/2009 17:34

Thanks I am very worried, it's hard when you see them deteriorate before your eyes.

We are not sure if she is having any seizures at all, or if they are sub-clinical, she is having blank staring spells but they have previously been put down to possible ASD/staring at lights. She does have strange jerky movements often but we don't know if they are tics/stimming or seizures.

She can't sign as she was starting to speak and this just happened in last month or so, she went from speaking in sentences and singing nursery rhymes perfectly to just babbling and drooling.

Sorry to hear about your DD too, I know that must be very hard for you as well.

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sarah293 · 24/09/2009 19:14

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fanjoforthemammaries7850 · 24/09/2009 19:16

I am really glad it is helping your DD.

I hope the EEG will be in the next week and would definitely try the diet if it shows something.

You aren't been clumsy, you have given me more sympathy than anyone else has here or in real life about this. Thanks

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sarah293 · 24/09/2009 19:20

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fanjoforthemammaries7850 · 24/09/2009 19:23

Yes, I didn't know what it was like to be so worried I literally couldn't handle it until now!!

You are being useful by listening

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sarah293 · 24/09/2009 19:29

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fanjoforthemammaries7850 · 24/09/2009 19:31

Thanks that is so nice of you, but I am in middle of making dinner and helping DH prepare for an interview he has tomorrow.

I might take you up on that at a later date though!

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sarah293 · 24/09/2009 19:32

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sarah293 · 24/09/2009 19:32

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fanjoforthemammaries7850 · 24/09/2009 19:47

Thanks , I will.

I don't talk about DD's issues publically on there as there are colleagues/distant relatives on there who don't know about it yet but we could speak privately there.

I must stop googling, I have internet on my phone and find myself googling when out and getting paralysed with worry.

I know they are going to test her for Rett syndrome too if the EEG is clear (she has muscle tone issues as well) and have been googling that a bit too much.

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fanjoforthemammaries7850 · 24/09/2009 19:48

request sent

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sarah293 · 24/09/2009 19:49

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sarah293 · 24/09/2009 19:50

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fanjoforthemammaries7850 · 24/09/2009 19:54

Yes, a scottish M

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sarah293 · 24/09/2009 19:55

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fanjoforthemammaries7850 · 24/09/2009 20:07

Great, talk soon, have to go, am sleeping in with DD tonight to let DH get a good sleep before interview, she still tends to wake 3-4 times a night!!

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sarah293 · 24/09/2009 20:13

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