Vigabatrin - hints and tips?

[r3dh3d]

OK, well after a rather intense session with paed mulling over the options (they're all shite and he's not going to discuss VNS without the regional neurologist who we see Dec) we are adding vigabatrin as quartiary. So DD1 is now on valproate, topiramate, keppra (can't spell leviteracetam) and vigabatrin. :sigh:

Other than the sight thing (which we know about and is a complete fecker due to other sight problems DD1 has, what side-effects happen in practice? You know, the stuff that isn't on the leaflet because it's not serious enough to warrant legal action, but is what everyone actually gets in practice.

And any hints/tips from Vigabatrin users? First dose tonight and we already worked out to spread it W I D E on the yoghurt or it clumps alarmingly.

no idea as i know nothing about this but bump!

Thanks Riv. I thought C might be on Vigabatrin. Thanks for warning on taste, v helpful - though I don't think she can hate it more than she hates the Keppra - that was a devil of a fight before we realised we could get some of it in as tablets. How much is C on? DD1 was starting with one sachet last night, but I guess it gets much worse the more you have.

The vision risk is more of a prob for DD1 because she has a host of poxy little visual issues already which mean she has limited vision and it's best in the part that would be lost. Of course. Paed says new research shows the rate of retinal damage is 1 in 6 with kids as opposed to 1 in 4 with adults, and has a delay of a year. They've withdrawn licence except for IS. So paed's plan is to put her on it for a year and then hope some of the newer stuff (I think something even newer than the rufinimide, we did discuss that one too - but he didn't seem to think it was right for some reason, and there was something else) has a track record of safety.

Re: number of meds. Yeah. Well. That's what they said to us, years ago . Paed now seems to think once you're on 3 you might as well be on 4. And one of them is Keppra which doesn't seem to have any interactions so sort of doesn't count. But yeah, it's a lot though I guess she's been on 5 before when things were very rough a few years ago. If the vigabatrin works, I think I'll ask to wean off the topiramate. I've been wanting to get her off it for ages - it's not helping her appetite and she's lost nearly 2 kilos in the last few months.

Re: LGS - I sort of danced round that question in the appt - DH was there and doesn't need to be frightened any more than he is at present so I had to be fairly veiled - but if we can get the lid on it, we're going to start another round of EEGs etc. Though I think it's as much to rule out a third focus as to check for LGS. But it seems to me it's a strong possibility.

Poor ol' paed. He had 4 of us in back to back that morning from DD1's school, all really complex/nasty E cases (he's a paed with "an interest" in neurodisability and epilepsy and seems to know at least as much about it as the neuros, thank God) I think by the end of it he was a bit wiped out.

We had it for DS for a while for his IS. It tastes bloody vile and even the 6 month old that he was managed to spit it out with incredible force - over me usually.

It did lower his tone and at the very high doses, it made him very sleepy. It was one of the reasons we came off it - there was very little interaction with him at all, and he was struggling to stay awake to eat.

he takes rufinamide now for LGS, and we are still increasing to prescribed dose (another 2 weeks) We are currently on 300mg twice a day. We won't know till we have the EEG in January, but I feel it has had a good effect. He is alert, awake and developing at his own pace. Sine being on it he has learned to roll over, has started reaching for things and is trying soooo hard to sit up.

I hope things improve for you soon x