Last week went to Tootie's eye doctor. We'd met with him this past June and were confident in starting Tootie on Vigabatrin.

Vigabatrin is an antiepileptic drug that was just approved by the FDA this year. Since Vigabatrin can permanently damage the vision of anyone who takes it, anyone on this medication must see an Ophthalmologist every 6 months.

At our initial meeting in June, the loss of peripheral vision was discussed; however, this time the doctor shared we would need to decide if blindness outweighed the need to stop the seizures.

Tootie's Ophthalmologist also shared the use of Vigabatrin is receiving a lot of controversy. Apparently, anyone who takes this drug is now going to be required to have 4 ERG's (Electroretinography) a year.

In this procedure, a tiny electrode is placed right on the eye to sense and record how the eye changes as a light flashes.The ERG's require one to be anesthetized so, that means anesthesia 4 times a year, a risk in itself.

I know the daily seizures are doing damage and recently learned about sudden unexpected death in epilepsy (SUDEP); however, if Tootie loses her vision, in my opinion; all she has accomplished would be lost.

Please pray for my daughter and son-in-law as they make a very difficult decision, thank you.