At my wits end...........no change in seizures after keppra started....

[proudestmummyever]

I am so down, the last few days have bn filled with tears and despair, Jack was put on keppra 1ml morning and night, alongside hs other drugs, the keppra will be upped to 2ml on Tuesday, and I have just bn pinning my hopes on ths working for him, but he is still having as many drop attacks and others as he ws before, just feel like I cannot cope, I am soo depressed right nw, what if ths is hw it is gna be?

I have bn bk on my diazepam for last week or so with a vengeance, just cannot deal with ths

BUMP

Would it take a while for the drugs to get in his system and work?

I wish I had some advice for you, but I know nothing about this. Just sending you good wishes and very unmumnsnet ((((hugs)))).

I hope things improve soon.

I can't help either but I didn't want to read and run. I really feel for you and am sending you all the positive vibes and hugs I can. Will say a little prayer for you all tonight,xx

sending you lots of love aswell. I watched your little man's vid, he is gorgeous!

Maybe when the keppra is upped to 2ml might make a difference? (sorry don't know about the drugs) Really hope things improve for you both soon but try not to get stuck in the 'is this how it's going to be' train of thought as it will just overwhelm you more, when none of us knows how things are going to be long-term. Thinking of you both.

Thanku every1...n jetcat32 thanku! He is a wee darling...I knw seuss, just soo hard to get out of tht train of thought just nw, but have to try....not easy

To cheer myself up I ordered his new buggy earlier- the phil&teds new sport in apple, apparently does up to 5 years, and Jack nt walking yet, nowhere near it, so got ths buggy for comfort, waiting on SN buggy coming from physio too, thts also hard to take as most of u knw all too well..but the SN buggy doesnt recline

Sorry the Keppra in't working. Fingers crossed an increased dose will do the trick. I'm sure you;ll get there eventually. DDs epilim has been increased and it wiping her out. 3 weeks in and she's still falling asleep at the drop of a hat during the day (not helping her sleep more at night though) and she's still having occaisional seizures. More blood tests on Monday - I hate them. I think we are going to have to try another drug here too. Hope Jack is doing better - his new buggy sounds great

Sorry to hear that the Keppra isn't working - we had some control with it to begin with but are now coming off it. Give it time - it can take weeks to get into the system fully we were told by our epilepsy nurse.

sorry the keppras not working yet-I agree with fatzac et al, you have to give it time. hope it works. we have Piracetam for drop attacks and works well so far. (2yrs). Re the new sn buggy-if your dc has epilepsy then you can request one that reclines in our area-might be worth asking about. Also if you feel it is not suitable fr his needs once you have recieved it you should be able to change it. Might take a bit of an argument with wheelchair services though!!)

Bloody hell...added a message then my computer lost signal!! Aarrghhh

Yeah Jack still on 1ml keppra, goes up to 2ml on Tuesday...think maybe teeny bit difference with keppra, Jack didn't fit his first two nappy changes and was prev doing it every time

Riven I believe yr dd didn't actually benefit on keppra til 2ml? Paed keeping good eye on him, seeing him again 13 May.

So u were told it can take weeks to get into system fatzak?

I am just soo depressed with it and fed up seeing my baby suffer

Sorry Keppra not working yet. I got changed onto it in November, took a while to start working. (I'm still not totaly fit free but better than Lamotrigine which left me totaly spaced out and falling asleep all the time!)
Hope things improve for all of you soon.

Hiya!

Well about to get Jack up...dreading today, just cos of seizures

Yeah Riven tht could be it...I am hoping so

He goes up to 2ml tomorrow, so praying I see a difference

Shannaratiger, thanku, hw long did i take for yr keppra to settle? To make a difference?

Jack' lamotrogine is being rduced as the kepprais being raised

It took until I was right off the lamotrigine and the keppra was up to 750mg.

Right...so it may be because of lamotrogine.

Jack was on 30mg morning and night, and 5ml nitrazepam and 5ml epilim, lamotrogine was reduced to 20mg on Tuesday last week when 1ml keppra started, so this tuesday(tomorrow) he is to go up to 2ml keppra and the lamotrogine is to go down to 10mg, then the next again tuesday he is to be reduced to 5mg, then the nxt week he will be off the lamotrogine and still on 2ml keppra.

So it works out that we see the consultant the day after the laotrogine is stopped completely....hw much is 750mg in ml's?

Keppra upped to 2ml this morning, ad lamotrogine brought dwn to 10mg from 20mg, praying ths works

How's today gone proudestmummyever? Any improvement?

W has started having his myoclonic jerks again which were the very first type of seizure he had years ago. If we give him his meds as soon as he gets up he's fine, but if we don't he'll always have one about 7.30 -8.00am.

We are going to LGI on Thurs to see our neurologist, so maybe we will have another change of dose! Not looking forward to being there again after the stay we had with him the other month. Can't even remember when it was - think I have just blocked out that horrific few weeks of our life

Hey fatzak, not much improvement, and I am exhausted today, h has bn very clingy and crying, really not like him ... what happened when you were in hosp?

I have had the worst few weeks in a while...

Xmas time was a wory too, he had a 2hr jerking status seizure, went to resus etc, was scary to say the least, first jerking one he has ever had