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vigabatrin wean

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Hi, again!

A question for those of you who have weaned vigabatrin (Sabril). My

daughter was down to 1/4 a pill twice a day and was having no

seizures. She also had just been through a bout of the flu and her

seizures always decrease when she's sick. But since I decreased the amount

to 1/8 twice a day and now down to 1/8 just at night, we're having some

doozies. Only 1-3 times in 24 hours...mostly at night. She's had little

to no withdrawals with this wean, so it's a little surprising. Did you see

more seizures near the end of the wean? Should I just hang on or back up

to what seemed to be working...1/4 a pill twice a day? The only other

thought I've had is that she seems more constipated than usual and just

having a hard time. It seems that this makes the seizures worse...or even

triggers them? Any thoughts or experiences.

Thanks

mom of Esther (Aicardi syndrome)

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,

Glad to hear that things are not too bad with

the wean. Most weans are worse towards the

end. Can't help with the vigabatrin wean because

we did it way before starting the diet and had a

v.bad time- Rohan was going in and out of partial

sz which looked like weird behaviour.

Re the constipation is Esther getting adequate

magnesium?

Saro

Berke wrote:

Hi, again!

A question for those of you who have weaned vigabatrin (Sabril).

My

daughter was down to 1/4 a pill twice a day and was having no

seizures. She also had just been through a bout of the flu

and her

seizures always decrease when she's sick. But since I decreased

the amount

to 1/8 twice a day and now down to 1/8 just at night, we're having

some

doozies. Only 1-3 times in 24 hours...mostly at night.

She's had little

to no withdrawals with this wean, so it's a little surprising.

Did you see

more seizures near the end of the wean? Should I just hang

on or back up

to what seemed to be working...1/4 a pill twice a day? The

only other

thought I've had is that she seems more constipated than usual

and just

having a hard time. It seems that this makes the seizures

worse...or even

triggers them? Any thoughts or experiences.

Thanks

mom of Esther (Aicardi syndrome)

----------------------------------------------------

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