do you ever dread a test?

[needmorecoffee]

doc has arrnaged an emergency EEG for dd as he's worried she has sub-clinical seizures going on. Her epielpsy is as bad as July 2007 when we founf the signs of lennox-gastaut syndrome.
I'm petriefied we will find LGS this time. I can't even say how petrified. Its the worse form of epilepsy to have. Its intractable and causes mental regression and has a high death rate.
Half of me doesn't want the EEG in case they find it
I feel sick.

I don't blame you.
I hate EEG's how do you get your dd to co operate. dd just wouldn't and hasn't had one since.

we just stick the things on dd's head. She is a total quadraplegic. Not like she can do anything to stop us
Does your dd have epilepsy?

I have just read up on LGS. interesting read, and has made me wonder if this might have bben what one of dd's school freinds has.
do remember(if it helps at all) that epilepsy is the norm with brain damage/injury

yep it is controlled now, or at least at the moment(wow your memory is bad;)

This must be exceptionally worrying for you .

ODL! its a wonder you're not a complete wreck! {hugs} for this horrendous rough patch you're having

I am a wreck. I keep throwing up.

F*ing hell NMC, I am so sorry. I always dread all tests, especially EEGs. I am dreading the next one for IS even tho I know they are going to find IS - just don't want them to find anything else .
I have been reading about it recently (you can imagine the google trail IS - Wests - LGS) and you're right, it doesn't make for happy reading .
BUT it may not be LGS. I am keeping everything crossed for you and DD x

OMG NMC, not even more on your plate and certainly not your greatest fear it is not fair.

I understand the temptation not to have the EEG, I always think ds does great, but then get really scared before seeing doc in case I have missed something scary.

But that pales in comparison

I am praying that it is not LGS.

sorry for brief hijack

FBB I just looked sommething up on IS and I read that infants can behave as if they cannot see until the spasms are controlled. Is that me clutches at straws on your behalf or is that possible for Gabe

sorry, end of hijack

sorry you've got the worries about LGS again. I do so hope it's not that.

NMC i cant even begin to imagine where your head is ATM (mentally i mean, not physically! judging by your last comment ) sorry, just trying to lighten the moment. Honestly tho, i am keeping everything crossed and wishing hard that its not LGS. [screwing-eyes-up-tight wishing hard emoticon]. Do you know when the test is for? really really wishing you luck. XXX

PS sorry if inappropriate, im useless at putting thoughts to words, and im really worried for you. XXX

madmouse - yeah, IS inteferes with sight. When dd was bad she was blind. And even now she doesn't have IS if she's having a lot of eleptifom actvity that we can't see (no visible seizures) her sight goes right down and she stops using it.

Didn't sleep at all last night so am about to take a benzo and go back to bed as dd is at school. Meant to be meeting a few mn'ers this evening for an early (6pm) meal but I don't know if I'm up to it. They are all 'norms' and I'm a complete wreck and very agitated and a bit snappy. Probably shit company. And one is 8 months pregnant and I always feel like a bit advert for 'what can go wrong' around pregnant women!

I do hope you'll go out tonight, NMC. Even an hour out could do you the world of good. I know you won't stop worrying, but at least you'll be out of the house. I know that always makes me feel better, even if I am on my own. I am really looking forward to having my hair cut on Saturday morning, then spending an hour or 2 on my own having a wander round the shops.

I know exactly how you feel around pregnant women but they obviously don't feel that way about you (IYKWIM?) or they wouldn't have invited you.

Hope you get a bit of sleep today, if nothing else.

Re: IS and vision - to you and MM. I've always been convinced Gabe can see (if only a little, I know there is a big problem there) but my conviction wavers now and again as sometimes he is more vague than others. It is much more apparent now. Yesterday, I was convinced more than ever as he seemed very focussed all day (particularly confusing for me as he seems to see better in different positions, so his focus can vary wildly throughout the day - could just be me kidding myself tho!). Today, he seems completely vague again. Don't know what to think!

NMC when is the EEG?

and how are you today?

feelingabitbetter - his vision will vary depending on and electrical activity in his brain. Its called CVI - Cortical Visual Impairment and is very commin with IS and with brain damage. DD has blind days when you see her listening (its why her communication aid will have auditory scanning too) and other days when her vision is good-ish.
There should be a vsiion support team in your area who may do support groups. dd went to a sensory support group for years. Sense are a great charity to get in touch with and do support groups and says out as well as allocating you a Sense keyworker who will be full of good advice over visual issues.