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We met with the neurologist this morning to discuss the next phase of James’ infantile spasms treatment. Because the ACTH does not seem to be working, we are going to wean James off of it. We’re going to decrease the dose from 0.75 to 0.50 for three days, then then decrease it again to 0.25 for another three days.
After James is done weaning off of ACTH, we will be starting a new drug called Vigabatrin. The neurologist warned us that there is a potential for vision loss with Vigabatrin. Great! (sarcasm) James already has vision issues with his one optic nerve that didn’t fully develop. Now you’re telling me he could go blind? Stacy will make an appointment with the eye doctor so that we can get a baseline of where James’ eyes are at currently; we might have to have weekly eye appointments to see if the Vigabatrin is causing irreversible damage.