Lennox Gastaut Syndrome...going out my head with worry thinking Ds has it...help!!

[proudestmummyever]

Hey, My Ds1, aged 2 has severe epilepsy due to a genetic disorder...he also has brain damage, his left and right temporal lobes malformed in pregnancy, he has hypotonia(v.low muscle tone) so can't walk, and won't for a while...and nw I have convinced myself he has LGS, asked the consultant over the phone about it approx 3 mnths ago, he said Jack's eeg that was done dec 07 never showed signs, but he hasn't had 1 since, and I am soo worried he has it. He has drop attacks, myoclonic's, tonic, and usually after bum change, or bath, or he can do it at night, usually a pattern to it, as of yesterday he started at night again n now better when getting nappy changes and baths, is there a pattern to it? He says occasional 3 words or so, and babbles, but past 2 weeks hasnt bn...so worried. He has also had gd few status seizures, bn unconscious etc Pls someone reassure me

BUMP

I have absolutely no idea what any of that means () but I couldn't just read and run you sound so worried

very unMN I hope someone can be of some use soon

xx

Thanku flamesparrow, I am v. worried

I wish I could offer you advice or help. but this is a subject I know nothing about, the ony mention I Have ssen is by Riven.
I do hope somone comes a long who can help.

bump

poor you pme, I can so imagine you are worried.

If he has not had an EEG since December 2007 surely it is time for one now. The fact that you as his mummy notice important changes should be sufficient. Time for another phonecall using the words 'I insist', 'I know my son best' and 'I am concerned and that should be sufficient'.

Either he does not have LGS and by our good Lord lets hope he doesn't, or he does and then you need to know.

I am going to ask for another eeg, but the seizures haven't really changed....they just worsen for a while, then get better for a while....it's excuse my french, but it is FUCKN HELL....HATE it!! Life is sooo shit right nw, where is the justice in kids being unwell like this???? Sorry, but needed to go mental there....

Jack had seizure at my mum and dad's earlier, managed to catch it on my phone so I can show consultant...they are just outta control just nw, but there is still a pattern to them....ie., gettin a nappy change, after a bath, getting pyjamas or any type of clothes on actually, and sometimes they will change and he will do it after waking particularly during the night, which I hate the most, he is nw in his own room, and much more scary, he woke up at 11pm and did it last night, saw him on video monitor, thank god! But I pray it isn't going to be a new trend, he is off to bed just nw, and I a worried sick

I am so sorry that I can't offer any advice or reassurance to you. Your posts are so full of dispair, and I hope you can get some answers about your DS. Nobody except Riven comes to mind, but her DD hasn't been dx with it either.

All I can offer is and maybe a glass of wine?

Thanks 5intheegg, my posts do always seem full of despair, cos my life seems to be, the last 2 years having my darling brave little soldier here have bn sooo eye opening, and sooo bloody worrying, it is hell watching him suffer, every day he has a seizure, bloody terrible...he is on 3 diff meds nw, I will certainly take a hug!!! Thanku, but not a glass of wine(altho I would LOVE 1), we have bn trying for number 3 ths mnth.....but nw sadly since Jack has went through a bad patch again(sseemed to forget hw bad it can be,as seizures had bn stable, although still there since xmas) so... If I am not pregnant ths mnth then will prob put off trying.....

Hey Riven, thts terrible about dd's eeg, seriously I pray it isn't that, hugs to you all, I am scared stiff.....but also too scared to ask outright , have appointment on the 21st, last couple days have bn shit, to say the least, dunno hw am still standing.

Gonna ask for another eeg, and KNOW I will ask about LGS, jus have to know, but I could be wrong too, hope I am panicking for nothing , remember I told you on msn tht he said Jack might have a condition tht he outgrows, cos usually the seizures are provoked by something...so I have went from one extreme to the other

proudestmummyever and riven thinking of you both!

Thanku trace2, means a lot