Referred for an EEG - has anyone experienced this???

[cordyroy]

My little man (nearly 3) has been referred for an EEG with suspected absence epilepsy :-(

I'm still reeling a little that this is happening and can't help but worry about where this will all lead. I'm avoiding random googling as I think I may scare myself into a frenzy!!!

Does anyone have any experience of this??

thank you x

I haven't no...but my DDs best friend has....she's 9 now and does have absence epilepsy...it doesn't affect her at all in any way that she notices.

She's a bright, clever funny girl who excells in swimming and art...she is also excellent at maths. Her Mum told me they said she may grow out of it in her teens.

She's at a selective school....had to pass a stiff exam to get in and she's great. I know this must be very worrying but wanted to let you know that it's not the end of the world...the only time it's ever been noticable was one time when she had an anscence in the swimming pool and stopped swimming but her teachers knew that she was and got her out immediately.

Thanks so much for your reply. I know everyday people hear far worse news about their children but just hearing that anything could be wrong is just so heartbreaking, but as you say even if it does become a confirmed diagnosis it is no reason not to live a full life and achieve amazing things!

thank you x

Been there only a few months ago.

Although for slightly different reasons they thought dd was fitting. Turned out to be something else but it was an interesting experience

He will have lots of little things attached to his head by this really greesy stuff which is a nightmare to get off and also a net put on he will have to sit and relax for about 20 minutes I think it was, they may record via video camera they did this with dd to visualise what is happening

Please don't Google it will upset you greatly xx

Thank you pickle, the biggest challenge will be keeping DS still and relaxed for 2 mins let alone 20!!! Glad to hear your DD is all clear :-)

I'm definitely giving google a very wide berth, I can imagine enough worst case scenarios without their help!!

thanks for your reply x

dd and ds have had this. ds has had both a waking and sleeping one.

they most difficult bit is when they stick electrodes to your head. not painful,just getting them to sit still and not accidentally pull them off was challenging . bring a few good dvds, books, snacks.
.
like any hospital appointment for your kids they are draining. give you and your dc some down time after.

both had had seizures. in dd i was worried but I was pretty sure there was nothing wrong. I was right they decided probably a temperature thing. I have seen nothing since.

With ds, who has other sn, I was convinced we were heading for an epilepsy diagnosis. i was seeing daily arm or leg spasms and he had had one majorly horrific long all over body one. but eegs and mri were clear. we were given a special medicine in case of prolonged seizures. I haven't had to use it. (he still gets temperature extreme shivers and spasms). outcome is he has seizures added to his diagnosises but not epilepsy. jury is still out on whether his wiring is quite right

DDs first EEG didn't show the epilepsy (she has early onset childhood epilepsy: focal motor seizures or some such thing) so be prepared for the fact you may not see anything first time out. We then had the sleep one too and that showed it (later confirmed by MRI). DD has what looks like a small swimming cap fitted to her head then conductive gel is squeezed thru. Cables link the hat to the computer. She has to sit still for 15 minutes - a challenge at 3 - with no stimulation. She usually just snuggles up now for a cuddle (we have checks every 3 months). For the sleep EEG they connect to the computer and video too. MRI was with general anasthetic.

Every facial spasm DD has is a separate seizure. At its worst she was having hundreds an hour though they never seemed to affect her, interrupt her play etc. She is now on medication and rarely has a seizure - when she is ill (cold, fever etc) I see it more; in fact it normally gives me a couple of days warning of approaching illness. If you do get a confirmed diagnosis then there may be things it will impact on, like swimming lessons, later on. At the moment for us it has no detrimental impact on her life at all except that she takes meds 3 times a day which don't taste nice. There is also, apparently, a good chance she will grow out of it in the future although in some children the condition can deteriorate and lead to grand mal seizures.

Good luck with your LOs testing.

Thank you so much for your replies. It really does help to hear other people's experiences. Cannot imagine how the pediatrician is going to keep my little man still!!