Vigabatrin

[igglepigglecrazy]

My ds,aged 3 has a rare genetic disorder and has severe intractable epilepsy, we tried lots of drugs before, now Jack has been put on Vigabatrin, alongside Topamax and Nitrazepam, he was on topamax 75mg twice a day and nitrazepam 3.5ml's twice a day and then he was put on vigabatrin, we worked up to 15ml's twice a day, but on 5ml's his seizures stopped, on 10ml's Jack went completely hyper active so he is now bk down to 8ml's twice a day of Vigabatrin from tonight... but the Dr's think he should be off it as he is not sleeping at all at night, if he does it's for a few hours, the topamax has also been reduced to 25mg once a day, as the neuro wanted to take down the drugs tht weren't controlling the seizures first as it could've been a combination of the 3 drugs together making him hyperactive, but although he is less hyper, he is still hyper all the same....

Don't see neuro til Tues, Jack is on melatonin at night, gets 10mls and if 4-6hrs later he is still not asleep or if he has woken I can give him another 10mls ....the lack of sleep is killing me and ds, anyone have any stories of Vigabatrin?

BUMP

All the kids I know on Vigabatrin are on a cocktail of meds. So they either have so many seizures that they just flake out at night, regardless of the meds, or they have a bunch of meds interactions that mean you can't tell what is causing the problem.

I can't help thinking that if 5mls stopped the seizures and he went hyper at 10mls you've got a good chance of no seizures and no hyper somewhere between the two. I'm trying to remember what the ramp up/down is like for Vigabatrin - it's pretty swift as I recall. Hopefully by Tuesday the sleep thing might be improved. I know it's ghastly, the not sleeping thing. Are you having to do the nights all on your own, or is someone else doing shifts with you? DH and I take turns when someone needs to sleep in with DD1, and the other one sticks their earplugs in and doesn't wake up for anything short of status.

Hi r3dh3d, thanx for replying, I am soo tired, well I am soo happy tht the Vigabatrin has stopped the seizures...so seems sooo unfair tht he is having these side effects and could be tken off the drug because of ths, I hope being at 8ml's will stop the hyperctivity, he is grunting constantly and wide awake, it's awful. EVERYTHING IS SPED UP, yeh the not sleeping thing is terrible, I also have a dd, aged nearly 9, and yeh I am on my own now, have bn since xmas, so it is soo tough
xx

Hey riven, is tht what C is on?? It is a brill med in terms of everything else!! Seizures stopped, Jack gettn skills bk, much more alert, laughing, enjoying things, he has actually started to cry, he NEVER cries so... I basically have my wee boy back, just the hyper activity and not sleeping thts the problem, and melatonin is not touching it, and paed says he won't put him bk on chloral hydrate as it could trigger a seizure

Maybe they're concerned it will affect her eyesight, Riv ...

Aw my fekn god Riven, they CANNOT FUKN do tht!! Yeah there are bad side effects on Vigabatrin, I worry bout the eyesight thing, gonna bring it up with neuro tmrw at appointment, cos Jack's eyesight is bad already, bn watching him like a hawk since he strted ths med, everytime I see his eyes wander slightly, I'm hyperventilating, tht i a worry for me, but to me, right nw, I have my darling wee boy bk, and evern saying "Mum" again, wat u gonna do Riven?? Hw much Vigabatrin do u have left?? What dose is she on?

Hw is C today? Hop she is bk to her gorgeous, smiley wee self xxxxxxxx

So did u get anywhere with the GP surgery?

I do worry bout the eyesight...but at least the IS is away for now, at least, hey? x

Is each PCT allowed to decide what is red list and what is amber? I didn't know that. Heck. Vigabatrin still seems to be OK here and I can't see why it's red list tbh other than perhaps that they want constant hospital monitoring of their vision?

Red list stuff can still be prescribed afaik, but you have to get it supplied from the hospital pharmacy, as it's off the GP's list - the computers stop handling it. It's still on the consultant's list though.

Yeh r3dh3d, tht sounds right actually, my GP still prescribes it, but thy will not prescribe the Melatonin for Jack, has to be the hospital pharmacy xx