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Old 08-02-2008, 10:27 PM   #1
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RunnersDad HB User
Vigabatrin......your experiences?

My son is 3 years old and was on Vigabatrin for about a year and a half. He was suffering from Cortical Blindness prior to the medication...and is unable to communicate with us verbally. I was wondering if any of your children or you personally had been prescribed Vigabatrin and if so was your vision affected in any way. 25% of people prescribed Vigabatrin suffer some kind of vision problems. I am just trying to gauge the likelihood that my son has suffered some vision imparments beyond the cortical blindness. Thanks for the assistance.

 
Old 08-03-2008, 01:23 AM   #2
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Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
Re: Vigabatrin......your experiences?

I will make a brief statement. No I am not on it first of all.
From what I can tell, this medication is not available in the US unless they are conducting drug trials. It IS available in Canada.

August 6-7th (so THIS WEEK) the FDA's advisory committee will be meeting and considering the drug's (and others) approval. Testimony submission deadline for this consideration was July 23rd (so wait and see).

I had never heard of it (the medication) until your post myself. Thanks for keeping me and others on our toes.

If you strike out here, try searching the web and see if you can find others that were in the med study groups; best of luck.

--Travis

 
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Old 08-03-2008, 09:50 PM   #3
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Re: Vigabatrin......your experiences?

You are correct regarding Vigabatrin not being available in the US. It does not have FDA approval which means it is up to the individual families to decide weather or not they would like to try it at their own expense. The price isn't necessarily an issue, but considering we saw no increase or decrease in our son's seizure activity while on the medication, we felt that the side effects were too great a risk to continue him on the medication. He is already on Keppra, Depikote, The Ketogenic diet, and he was only 14 months old when he had the Vagal Nerve Stimulator implanted.

 
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