Well I just got a call from the Share Pharmacy that they are processing Finnian's Vigabatrin. So now he will be getting his Vigabatrin here in the USA instead of getting it from Canada. I will miss talking to the the wonderful people in British Columbia who for the past 4 years have been sending Finnian his Vigabatrin.
Vigabatrin is now available in the USA but only through a Share pharmacy. The doctor must sign up with Share and then you get the paper work which you fill out. The doctor then fills out their part and then it get sent to the Share pharmacy. Vigabatrine for now cannot be picked up at your local pharmacy. Bummer.
The usual ERG is still required but for us Finnian's vision is basically non existing. Not from the Vigabatrin. His retina's still react to light but the part of the brain that proccess what he sees is basically gone due to his stroke and seizures on the right side and his left side of his brain is also now a hot spot for seizures.
I remember the day the doctor came in and said" Yes it is Infantile Spasms and we have 3 options of treatment. First choice is ACTH, second choice is Vigabatrin and third choice is a combination of drugs." He recomemded that we first try Vigabatrin and we did. We were lucky that Vigabatrin worked on his IS but we have had to add other drugs to his daily meds as not only does he have IS he has many other types of seizures.
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