Vigabatrin
- Anna- Anna stopped smiling and laughing for the entire four years she was on Vigabatrin, but started smiling again within a week after we discontinued it. We eliminated it because of our concerns about possible vision loss - we noticed that she was having to turn her head to see things which she had once been able to see with her peripheral vision. RD (father of Anna, 13)
- Annie- 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.
- Caitlin- Medisave Pharmacy-Surrey,BC www.medisave.ca Search under Sabril (Vigabatrin) Phone# 1-877-888-3784
- Maia- Vigabarin (Sabril) was an excellent drug for Maia and managed to keep her seizures at bay (completely) for over a year after weaning her off of ACTH. We then decided to wean her off the Sabril (guess we got greedy) and , of course, the seizures slowly returned. We did not choose to immediately put her back on Vigabatrin as our reasons for removing it were still the same- the vision issues. We spent a few years playing on the medi-go-round and after finding no real help- decided to go back to Sabril. We sort of thought of it as our 'ace in the pocket'.
- Marisa- Vigabatrin - When the tegretol didn't control her seizures, she was then started on vigabatrin. We were on this for two weeks. As soon as we started the medicine Marisa's seizures stopped; it was like having a totally different child. She seemed to be more alert and even smiled some. After the "honeymoon period" ended it was our worst nightmare, she began having these horrible blood-curdling screaming seizures and kept shaking all over like she was cold. After receiving a dose of ativan Marisa was calm for the night, but once the ativan wore off she began having these shaking seizures again.
