Come talk to me about Keppra pls???? Advice needed

[proudestmummyever]

Well Jack was started on 1ml Keppra yesterday at his hospital appointment, as his seizures are terrible....he is still on lamotrogine, nitrazepam and epilim.

We have to reduce the lamotrogine, so from last night we reduced the lamotrogine from 30mg to 20mg and added the 1ml of Keppra, he is still getting 5ml nitrazepam morning and night and 5ml epilim morning and night, but next week we are reducing lamotrogine to 10mg and upping the keppra to 2ml, but we will keep reducing the lamotrogine til he is off it, confusing eh? , Does any1 have positive stories about Keppra? I am desperate for a change in his condition, I am soo sick of watching my darling boy go thru this?

Consultant confirmed tht Jack is having "atonic seizures" or drop attacks, as well as other types.

We did discuss lennox-gastaut-syndrome, but said not to worry about ths just nw, as nothing to bk it up....well not enough evidence, but said it could evolve later on and to keep it in the bk of our minds.

Jack has had 2 seizures today. Feel so crap

BUMP

ANOTHER BUMP lol

Hi proudestmummy, so when you get confirmation that his seizures are indeed so bad and that he has not actually said that that it is not/will not be LGS .

I am pretty sure that Riven's dd is/was on Keppra and that for a while it worked well? Sorry if i am wrong Riven

Oh well this post will at least push you to the top of the list again.

I'm with Riv. Keppra is good. It's one of the "we try this on kids with fairly tricky seizures cos it's new and seems to work" meds. DD1 is on Valproate 10mls bd, Topiramate 125mg bd, Keppra 5mls bd. She weighs 18kg more or less.

I've not found it to be a "magic bullet" in the way topiramate was - which stopped seizures short for a while. But it has far less side effects for us so is better than upping the Topiramate. One down side you may find with the Keppra is the seizures seem to "cluster" ie you will have 3 good weeks and 1 bad one or whatever, without there being anything particularly wrong in that 1 week and then it just clears up on its own.

We're having ... I dunno about 3 or 4 a day at the moment. Which is more than a "stable" amount for DD1 and I'm discussing with the neuropaed tomorrow. I think the thing is not so much how many they have though, as how do they effect them and is it a sign of an increasing trend?

I typed out a message earlier but my computer went crazy lol, well I am hoping tht ths drug works, his seizures have increased...but since about xmas, when he had his first jerking seizure, status lasting 2 hrs.. then he was stable although still having at least 1 seizure a day but there was a pattern to it iykwim, he would do it coming out bath everytime but it would pass real quick, but nw they r just chaos!

But ths is kinda hw it goes, really bad stage, then a good stage(bearable), then really bad and so on....hope we get on much better with ths drug, Jack has went seizure free 8 days in a row when he went onto his first drug(nitrazepam) when he was 10 mnths old, but ths is most success we have had, just want his seizures to be under cntrl hopefully sooner than later...and I hope this is an option and tht he doen't have really regular seizures for the rest of his life, it's soo unfair