darndarndarndarn

[needmorecoffee]

dd had another seizure last night. 3 this week, always 10 minutes after falling asleep. Before this week, none since last July.
Her arms go up with fingers splayed, head truns to left, eyes flutter and face twitches. Lasts about 2-3 minutes.
I'm hoping its a complex partial cos a tonic seizure would be a big indicator that the Lennox-gastaut syndrome is developing.
Feel very very down and like everything we've done with her is totally pointless cos LGS would wipe out any skills she has developed.

needmorecoffee, im sorry i just dont know what to say, i just didnt want to read this and not post. Cannot even start to think about what you go through.

But what i do know is that you DCs are very lucky to have a Mum like you !!

I don't think they are. I feel like running away and last night I even thought if she had died at birth like all the docs predicted I wouldn't be lying here worrying. A terrible thought.
And then I selfishly thought I'll never be able to put her to bed alone and will have to go to bed with her before 9pm every bloody night (been doing it over a year now) and wanted to write nasty posts to those people whinging on about how to get their children to bed. I am a nasty person and I'm in bits here. I hate seizures.

Yes they are very lucky.My son has had massive seizures in the past,always went into status,but he is ok now,you are going through a stormy period but it will pass.

I think that what you are feeling is perfectly acceptable Tbh, You have every right to feel that way.

You are NOT a nasty person (far from it) You live with this day in day out!! But yet you still manage to help people like myself. Im not sure i could do that.

YOU ARE AN AMAZING PERSON, and a fantastic Mum.

You are in my thoughts NMC

thankyou TCD. Feeling sorry for myself. Pathetic really, as its not me with severe CP and seizures, its poor dd.
But missing 'normal' life.

I'll be thinking about you and your dd too.

I know it's different, but dh's epilepsy meds mysteriously stopped working a few years ago. He had fit after fit, and every little noise would have me running to him to see if he was OK. Luckily, this only lasted for a couple of weeks but I was physically and emotionally shattered even after such a short time.

I'm sure if someone had said they were short of sleep during that time I'd have bitten their head off.

You aren't a bad Mum for feeling like this. You're just being honest.

Sorry to hear about DD's seizure, and the worry you are going through.

Oh shit, NMC, how very worrying and frightening.
Really sorry you're going through this.

NMC - what you are coping with would have most people in bits, so you are fantastic and should not beat yourself up for being only human in your thoughts. I know all parents love their children, but I think you really know what unconditional love is when you have to live life under this kind of pressure. Big hug to you!

Was talking to a friend who has an older DD with special needs who suffers from seizures and she was saying that this has happened to them many times but each time there has been a way of tweaking her DD's medication to bring the seizures back under control. Would it be worth getting meds reviewed?

Thinking of you,

xx

we're doing that. Its not the actual seizures but what the underlying syndrome might be. Most epileptic syndromes are benign if unpleasant. But some cause mental regression and loss of skills and some lead to death.
Thats why I am in such a swivet.

Oh nmc epilepsy is a b'tard its one of the things I dread (have been told ds2 is at increased risk of developing it).
As the others have said, hopefully altering her meds will do the trick, a friends ds has had surgery to control his epilepsy. I'm not very good a the technical stuff but had the top layer of brain surface skimmed off to allow new cell growth to some through. Apparently it was all getting bogged down because his irregular brain development was hindering normal cell growth (or something similar).
Any way he is seizure free atm for the first time ever!
I suppose what I am trying to say is there is always hope of something else around the corner to help, you are a fantastic mum, stay strong.

have sent you a message.

((Needmorecoffee and dd))

NMC- Only just read you post. As you know my son has WIlliams sydrome and was also dx with IS at 5 months and I know just how bloody terrifying the seziures can be. He has (touch wood) been almost sf for a year but every day for the past year I watch and question every little movement that he does. Its terrying, Im terrified of the seizures comeing back and the possibility of it developing into LGS just doesnt bear thinking about.

I can handle the Williams syndrome- no worries but WHY WHY WHY did he have to have the seizures on top and I know thats how you must feel. Tough but hang on in there, your amazing and a tower of strength even though you wont feel like it most of the time.

How are you both today NMC, Did DD have a night?

Thanks Louro. Having a 'its not farking fair' moement.
DD didn't have a seizure last night but then I midozolaned her before bedtime to 1. stop anything scary and 2. make the bad tempered little wotsit go to sleep.
She woke at 4am and grizzled till 7 before sleeping an hour so will make today hellish as well.
Do Non-CP kids grizzle and have bad days and nights at 4?
Am dreading her EEG on wednesday so will go for a walk while dh stays with her otherwise I'll be trying to interpret the EEG pattern myself! I know enough to be dangerous!
Called the epilepsy nurse and her paed today and both unobtainable. This is ridiculous. She's having seizures that are new and I can't get anyone to talk to or to tell me should we start the keppra now or do 2 weeks wean of the lamotrigine first as agreed 10 days ago or even start the bloody wean?
That hospital is like the fraking Mary Celeste.

So many questions huh.....!!!! Youve been dealing with this alot longer than me but Im amazed at how much ive picked up along the way and it helps but can also be a HUGE hinderance sometimes too.

My ds takes melatonin at night to help him sleep. It helps him fall asleep but not stay asleep and he often wakes at 4 and then grizzles until 6. We will very rarely sleep right though.

Is it the IS that causes the poor sleep or is is ld in general.......? Something I have often wondered and been given many different answers too!!