Weaning off Epilim

[Pipsee]

HI all!

I haven't been around for a little while!

C's (my daughter's) doctor has suggested we wean her off Epilim syrup and I'm just wondering if anyone or any parents have had to wean off Epilim and what happened?

She was on 7 ml twice a day and we've slowly weaned down to 4.5 ml twice a day and are still going - so far so good no signs of seizures. (she's also on Keppra 2 ml twice a day)

We're talking about the possibility of her having grown out of the seizures. She was having a few clusters a day about a year and a half ago!

We have never had a diagnosis indicating why she had these seizures but she also has quite noticeable global developmental delays - no diagnosis as to why that is either ... Due for another MRI soon.

Anyway the reason I'm posting is because I just wanted to see how other people weaned off epilim (how slow/fast) We're going at half a mil less twice a day for a week (so this week it's 4.5 ml twice a day and next week it will be 4 mil twice a day).

ANYWAY!

Cheers and HELLO again... haven't been around for a while

 

[epileric]

One thing that people have mentioned here on CWE is that stopping an AED too suddenly can trigger seizures. I'd think it best to wean C off slowly, maybe even a bit slower than what the doc recommends. On the chance that C does still have a seizure while tapering off (I'm really hoping she doesn't), still having some in her system might help lessen the severity as well as make it easier to get her levels back up to normal.

Good to hear that things have been going well with C. Good luck & hope they stay that way.

 

[Pipsee]

Yeah I think that's what I'll do - the last bit when we get down to 1ml I think I might extend for a bit longer too...

She'll still have Keppra...

It's scary and exciting - I'm hoping that coming off will make her a bit more aware/energised or something... Not that I'm counting on that happening but I can always hope!