anyone had any experience with VIGABATRIN?

[Guest guest]

Hi all

Went to see morgan's neuro yesterday, (not very productive i have to

say) he is thinking of trying morgan on Vigabatrin and i was wondering

if anyone elses kiddo's have been on this? he said there is a chance of

VI problems but he thinks the benefits out way the side effects, i on

the other hand am not so sure! he's got enough problems with out adding

anything else!

The other option is the ketogenic diet! i have found a website thats a

wealth of info(matthewsfriends)...but.. to be honest it seems to be so

much hard work!! i know we've got that anyway..but i don't know if i

can cope with anymore!! his diet is very poor at best and so is his

fluid intake. so he is fed through his G-tube, this diet is so strict

that i don't think he will be able to carry it out to the degree that

is needed for it to be effective.

Anyway!! all opinions are very welcome and thanks for everyones time i

know how precious it is!

Hugs and love to all our angels

mum to morgan

xx

[Guest guest]

We were also at this stage, however Chloe seems to have stabilised on Topirimate

and Lamotrigine, the Lamotrigine being the main one I think

Dom, father to Chloe, Cerebral palsy with four limb disorder secondary to

diffuse bilateral polymicrogyria, Severe development delay, epilepsy with

generalised and partial seizures, G

Tube, two ops on each hip. age 6

anyone had any experience with VIGABATRIN?Hi all Went to see

morgan's neuro yesterday, (not very productive i have to say) he is thinking of

trying morgan on Viabatrin and i was wondering if anyone elses kiddo's have been

on this? he said there is a chance of VI problems but he thinks the benefits out

way the side effects, i on the other hand am not so sure! he's got enough

problems with out adding anything else!The other option is the ketogenic diet! i

have found a website thats a wealth of info(matthewsfriends)...but.. to be

honest it seems to be so much hard work!! i know we've got that anyway..but i

don't know if i can cope with anymore!! his diet is very poor at best and so is

his fluid intake. so he is fed through his G-tube, this diet is so strict that i

don't think he will be able to carry it out to the degree that is needed for it

to be effective.Anyway!! all opinions are very welcome and thanks for everyones

time i know how precious it is!Hugs and love to all our angels mum to

morganxx