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Original poster

If i type out DS's EEG report, would you care to express an opinion?

54 replies

JustKeepSwimming · 02/05/2009 19:13

(hope this is the right place to put this)

History:
DS2 (15mo) had 2 'convulsive' seizures (Tues & Wed)
He has also been having absence seizures since Wed (poss earlier but we have only noticed them since then)
Had EEG Friday

EEG report (just the conclusion) as follows:

'The EEG is markedly abnormal. There are frequent high amplitude spikes and sharp wave abnormalities that are ill localised/multifocal and sometimes more generalised consistent with a seizure disorder. Abnormalities at present are not hypsarrhythmic. Further classification is not possible.
You may want to look for potential underlying causes such as structural cerebral pathology as well as metabolic aetiologies.'

Right, imagine i know nothing. what does this tell you?
Could you compare it to your own/your DC's report?
Any help, support, advice & hugs welcome.

(we understand that he has epilepsy, he is due to have an MRI soon for more info, then we will be transferred to GOSH and to discuss meds. All new territory for us and need some knowledgeable support, tia.)

OP posts:
stillenacht · 03/05/2009 20:35

JKS - thinking of you hun - we are all here xxxx

DJAngel · 03/05/2009 22:48

Hi JKS.. Sorry to hear your little one is poorly on top of everything else and hope he and therefore you get a bit more sleep tonight..

In our case it appears the TS is a spontaneous case with no evidence from CT scans and skin tests for abnormalities that feature that it came from either of us. The main relief for us was that my ds1 is clear of TS genes..

I was 41 when I had dd2 and did wonder about that but have been told that was not a factor. Who knows..

I think those early morning feelings are the worst in those early weeks..It's still such early days and so raw at this stage of things.. just hang in there and look after yourselves as much as you can. I often find having a good cry helps me to carry on with things, but I know that's not for everyone.

I know what you mean about the NSE forum seeming scary. I hung back just reading threads for a while before I plucked up courage to post.. Whenever you do I think you won't regret it..But yes, the time has to be right for you.

Hope tomorrow is an easier day.

Original poster
JustKeepSwimming · 05/05/2009 16:37

Thanks guys

All feeling calm at the mo, ds2 'only' having his absences, and then only a cluster of them once a day it seems.

Got his MRI appt through for Thursday - string pulling by doc i guess or a lucky cancellation.

Have got to sort nursery for ds1 which should be no prob then we can concentrate on ds2 for the day.

any tips on mris?

OP posts:
fatzak · 05/05/2009 22:30

Is he having a general anaesthetic? He'll be fine - will just be you pacing the corridor until he comes round!

stillenacht · 05/05/2009 22:51

its just the no milk /food that was difficult as DS2 so fixed in a routine (due to the autism) by the time he had his MRI (he was 30 months old) that he wasn't allowed to have his morning bottle and he went mental..screaming all morning and well the night before in the hsopital was hideous but again that was down to the autism. the MRI itself was a nice hour off from the screaming beforehand (due to lack of routine again)..seriously just get a coffee you will feel a bit wobbly but it will be fine

stillenacht · 05/05/2009 22:51

DS2 had a general. He was so cute when he woke up but i did have a little cry.

Original poster
JustKeepSwimming · 06/05/2009 06:02

Thanks!

They said he won't have a full GA but will be knocked out somehow.
One of us can go in with him, the other will ave to pace the corridor - not sure which i prefer
both of us going for a coffee sounds ok but don't think we can leave him really (only 15mo).

Am prepared not to be told anything at the time, though would love to be.

DS2 should be ok, he'll have some water first thing, then get distracted by trip to hosp, just hope we aren't too far down the list.....

(have done similar with ds1 when he had his testicles descended 2 years ago).

OP posts:
DJAngel · 06/05/2009 22:34

Hi JKS
Hope tomorrow goes ok.. Our dd2 was able to be distracted on way to hosp in car too and although was pretty groggy and tearful afterwards for a while - didn't take long and she was tucking into packed lunch we'd brought with us! It was awful for us having to leave her to have the MRI after she had her GA but she has recovered really well and quickly both times. Have a treat for yourselves waiting when you get home.. Results should be pretty quick I think..

stillenacht · 07/05/2009 07:07

Good luck with today JKS

sarah293 · 07/05/2009 08:05

This reply has been deleted

Message withdrawn

Original poster
JustKeepSwimming · 07/05/2009 17:52

Thanks all.

MRI was fine - he slept fine though he resisted falling asleep big time - was liveliest after the sedative

anyway, the doc looked at it straight away though he admits he's no specialist. there is an area of high spot activity or something.
poss tumour, poss other injury/from birth cause.
they were vvvv uneasy about him not being on any meds so we all agreed he should start the Epilim today (though the pharmacy is yet to produce it ).

Specialist at GOSH has been told a verbal report - they will review formally on Tues when they have their referral review meeting so hopefully we will hear back after that.

not totally sure what the best case scenario is really.
they say, def x-type of epilepsy, continue with Epilim as planned, let us know how he gets on?
don't really want them to drag us up there for days on end for 'investigations' but guess if they call we go running

now we've agreed to drugs, just want to get on with them and see how he reacts.

Is there a group of epilepsy mums (& dads) on here?

OP posts:
sarah293 · 07/05/2009 17:55

This reply has been deleted

Message withdrawn

Original poster
JustKeepSwimming · 07/05/2009 18:04

Thanks Riven - will have a read through and try to join in....

OP posts:
stillenacht · 07/05/2009 18:54

JKS - hope you are ok xxxx

Original poster
JustKeepSwimming · 07/05/2009 19:39

Thanks.
Thought i was until i just snapped at DH for no good reason then had an (almost) overhelming desire to throw anything breakable across the room

going to go round the corner and find some chocolate, the need is that serious!

OP posts:
kando · 07/05/2009 20:05

Have not read all the posts on hear JKS, but wanted to say I'm sure you won't lose "your" ds. Although I have no experience of Epilim, dd1 (8) was diagnosed with Epilepsy at the age of 4 and was put on carbamazepine. This controlled her seizures (absence seizures to begin with) instantly. She was on it for 2 years then we weaned her off it but sadly she started having seizures after being off her meds for 6 months (not absence seizures, but not tonic-clonic ones either) and we had to put her back on the carbamazepine. She is still the "same" dd1, she didn't change in any way. I just wanted to let you know that, but again, it wasn't Epilim she was on. I really hope you can get this sorted for your ds.

Original poster
JustKeepSwimming · 07/05/2009 20:09

Kando - thank you. it brings tears to my eyes how kind people on here are

Pharmacy produced, dh made it home in time, DS2 has had his first dose.
here we go....

OP posts:
fatzak · 07/05/2009 20:31

Fingers crossed Justkeep with the Epilim. And don't forget that there are so many medications to choose from that if this one doesn't work, there's plenty more to try!

Ed Psyc been into DS' school this week and is now raising possible dyspraxia. I'm not in the slightest bit surprised as he is the clumsiest, messiest most forgetful 6 year old I know but then again I'm not much better

Original poster
JustKeepSwimming · 07/05/2009 20:38

LOL, is dyspraxia inheritable?!

Am staying positive re epilim - he will be fine on it, it will control/stop his seizures and a year or so from now, this stress will be a distant memory....

OP posts:
stillenacht · 07/05/2009 21:12

Welcome to the Epilim club JKS xxxx

fatzak · 08/05/2009 09:41

Im sure it is! DS doesn't stand a chance poor thing - I would probably have been diagnosed as dyspraxic and DH is without a doubt dyslexic (but refuses to acknowledge it!)

Original poster
JustKeepSwimming · 14/05/2009 18:02

Thanks Stillenacht

Fatzak - sure my FIL is dyslexic but never diagnosed, DH is and BIL is too. Something i know i will have to watch out for in my boys.

Well, GOSH rang today with an appt for next Tues.
Is that moving incredibly quick for them? or normal pace do you think?

It's at the epilepsy clinic so i'm thinking that means they are sure that's what it is.

Good News - today & yesterday - no absences seen

Bad News - forgot morning dose on Tues, 30+ absences at lunchtime and teatime
(he had the morning dose, just at lunchtime as he slept all morning)

OP posts:
labyrinthine · 14/05/2009 22:51

JKS~could you tell me what the absence seizures are like?

Original poster
JustKeepSwimming · 15/05/2009 06:25

Hi Labyrinthine,

When he started the absences (on the Wed following his 2nd TC) his head dropped straight down and his eyes rolled upwards. It looked a bit like he was 'playing' with his head and looking up at you, but not quite 'right' IYKWIM?

More recently they've changed slightly so his head drops more to one side (his right) and his eyes still do the rolling upwards thing, to the right too.

When he's been lying on my lap, his head doesn't drop, the eyes just roll up & to the right.

(the MRI found a bright spot on the right side of the brain, but i thought it worked on opposites, so would have guessed his eyes should go left? accept that is probably nonsense!)

OP posts:
labyrinthine · 15/05/2009 11:02

thanks JKS
Could I ask what is the cause/origin of the bright spot?