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]

,

I know how you feel about the Keto Diet.

My son is the same way with his poor diet.

Keto is an option his neuro is looking at for us also.

I'm just not sure I can get him to comply with the foods he has to eat.

Its important to eat all the food which would be a problem also for us.

I can just see me now standing on my head trying to get him to take at least 1

bite much less finish the entire plate of food!

I guess we won't know unless we try though.

Its the least invasive of seizure control options our neuro is giving us.

He has failed 7 meds already. Keto, VNS and surgery are what is left.

Donna(mom to Trevor, 12 yrs old BPNH-PMG and other diagnosis)

Rockville, land

From: lisa166284

To: polymicrogyria

Sent: Thursday, January 10, 2008 6:16 AM

Subject: 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 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]

Hi Donna

looks like were in the same boat!! keto vns and others horrific meds are now the

only option for us, please keep on touch and let me know what you decide to do

and how it's all going, please feel free to add me and we can catch anytime.

lisagold2@...

love and hugs to our angels

xxx

To: polymicrogyria@...: donnasc4@...: Thu, 10 Jan 2008

08:53:56 -0500Subject: Re: anyone had any experience with

VIGABATRIN?

,I know how you feel about the Keto Diet.My son is the same way with his

poor diet.Keto is an option his neuro is looking at for us also.I'm just not

sure I can get him to comply with the foods he has to eat.Its important to eat

all the food which would be a problem also for us.I can just see me now standing

on my head trying to get him to take at least 1 bite much less finish the entire

plate of food!I guess we won't know unless we try though.Its the least invasive

of seizure control options our neuro is giving us.He has failed 7 meds already.

Keto, VNS and surgery are what is left.Donna(mom to Trevor, 12 yrs old BPNH-PMG

and other diagnosis)Rockville, land From: lisa166284 To:

polymicrogyria Sent: Thursday, January 10, 2008 6:16 AMSubject:

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 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

morganxx