02-01-2003

Annie has been on vigabatrin for a year now, ever since she was about 6 months old. Our doctor told us that the two most common side effects were the risk of losing peripheral vision and constipation. So far we are not recognizing any vision problems; Annie will still turn her head to see us or toys that come from behind her and into her peripheral vision. As I understand, that problem is not all too common. Annie did have pretty bad constipation from it however, but just recently it has just gone away somehow and she is very regular with soft bowels all the time now. As for price, we get our vigabatrin from a Canadian pharmacy and it costs $140 for 100 sachets including shipping. Vigabatrin hasn't affected Annie's sleeping habits at all. She continues to sleep thru the night as she did before she was put on vigabatrin and she still continues to take several short power naps during the day, just as she did before. I know some other moms have said it has caused restlessness, but I've never heard of that being a possible side effect myself, and have definitely not found that problem with Annie. I think every girl is just so different and reacts to drugs differently. The vigabatrin has really helped control Annie's seizures--from 5-10 clusters of spasms a day lasting 5 minutes each, down to 1-2 a day lasting 5 minutes each, and even recently she’s sometimes only have them every other day. Vigabatrin has also helped control her tonic-clonic seizures from 2-3 a week lasting 1 minute each, to 0-1 a week lasting 1 minute each. We really have loved vigabatrin and haven't had to use anything else with it. It really made Annie come alive and start to smile, vocalize, and wiggle more. We are very pro-vigabatrin!