Epilepsy: I'd like to know how much is a 'normal' amount of Keppra

[Lauree]

OK, I know, how long is a bit of string.....
but DS has just been perscribed 6mls of keppra twice a day and he is 30kilos.

I'd just like to have a feel for whether this is a small medium or large amount.

we're switching from Sodium Valproate to Keppra, because my son has been walking around as if he's very drunk all the time on the SV. hope it works.

would love to know how much other kids take for their weight.

Sounds at the small end to me. DD1 is 18kgs on a good day and is on 5.5mls am and 6mls pm. This is probably the max clinical dose (knowing DD) and works out at 64mg/kg daily. BNF kids is recommending 60mg/kg.

Keppra (DD's paed said) is one of those that may work fine at a lower dose, and rarely works better at above clinical dose. If it works at your current level they may tweak it up a bit to see if they get better response but top dose for his weight would be 9mls twice daily.

How is he with the taste? DD1 loathes it, but there is a tablet available and we take the equivalent of 5mls in tablet form and only have to get the difference in as the liquid.

DS is on 3 mls, twice a day and he weighs just under 15kgs.
(he also has 6 mls Tegretol, twice a day)

Lauree - DS weighed the same as DS when he was on Keppra. We were on tablets though so I can't work out a comparison! We came off Keppra in the end - he went into a non convulsive status and one of the neuros decided it could have been brought on by being on too much Keppra He is on Tegretol now but still not controlled,

Can I just ask out of interest how many of your children are on 2 meds? We have always found DS has better control and is better in himself when he is on two small doses rather than one large one. His neuro says that to go down this route is "unorthodox" but will consider it seeing as that we know DS best. I thought it was quite normal??

DD1 is on 3. Sometimes 4. About twice the recommended dose or Topiramate, about one and a half times the recommended dose of Valproate and the recommended dose of Keppra. Plus clobozam from time to time, dose depends on what they are trying to do with it.

I don't think she's ever been on a "low" dose of anything though! :lol: She seems to metabolise meds very quickly as well as having a resistant type of epilepsy.

What colour were the tabs, fatzak? The different doses of Keppra are different colours so you can work out from that.

Thanks for the feed back guys...I'm not sure what to make of it all, but 6mls twice a day for 30 kgs sounds like a normal to low level then in your collective experiences.

I'm shocked by fatzak's news about the status possibly being brought on by too much keppra- can you tell us more please??
DS had what I think might have been a non-convulsive status, and it's what prompted his epilim prescription to be increased to the point where he is staggering around like a drunk, which is why we're switching to keppra.

I also noticed your comment about smaller doses of two drugs might be better tolerated than a larger dose of one drug. Will be keeping that one in mind.

I asked the Dr how she decides how much too precsribe, and she told me that in her experience she hasn't seen a child prescribed less than that amount. It didn't sound very scientific!

I am yet to be convinced that the Drs really know what they are doing, and some have openly said they don't know exactly how the drugs work. Are any of you ever tempted to tweak the doses yourselves? I really want to be giving the minimum.

and, my goodness keppra smells like poison to me I can understand your DC hating it, Red. DS doesn't mind it, and strangely his dad said he LIKED it ( we've all tasted it to see just how horrid it is!) but DS hates the SV, which I quite like the taste of. I think its cuz he knows what the side effects are.

I hate this. I feel like I'm poisoning my son twice a day.

Riven, my heart goes out to you doing keto too. I went to a conference a couple of years ago and I just sat there in tears because I realised our problems are so small in comparison with others. Oh. blow, gone all weepy again just thinking about it...better get some tissues to dry the keyboard before I shortcircuit something!

Found the old box of Keppra. He was on 500mg twice daily at his max, but he was on 750mg split am and pm for most of the time. Seems ages ago - only Feb!

The best he has ever been was on his discharge after being in status when he was reducing his keppra, introducing tegretol and on a short dose of clobazam. We had 2 weeks without even the slightest twitch or jerk which is unheard of!!

Thanks Fatz, for looking that out. It's interesting that your experience of low doses of more than one drug might be better. DS's paed said they try to get the DC on just one med, but I got the impression that the only reason for that is that DRs can't really tell what med is having what effect, and the only way to tell if one is working is to take only that one for a bit.

I feel soo sceptical about all this!

for the record, when we visited GOSH last they said we could take the dose down to 5mls twice a day , and DS is 35kgs in weight by now. and no sign of any fits, startles or absences for
the moment.

when we reduced the dose I could see a definite improvement in his general concentration and alertness