Update

Caillain was admitted into the hospital last week on June 15 for another 24hr EEG follow-up. We were told that the steroid had stopped working and there were no signs of improvement since our last visit. They decided to start him on a new medication called Sabril (Vigabatrin). Sabril was just recently approved in United States by the FDA in September 2009. Prior to that, their patients had to get the medication from Canada. The reason that it was just approved by the FDA is because it has a serious side effect. It can cause peripheral vision loss which is not reversible. Therefore he must see an Opthamologist within in two weeks of taking the medication. If there is any sign of vision loss they will stop the medication. On the upside we have noticed very little to no seizures since starting the medication. Dr. Glicksman has also told us that they have never had to stop the medication due to vision loss. We are very hopeful that this medication will stop the seizures completely. He is still on all of the other medications as well including the steroid. They can not just stop it because his body will go into shock, however they have started to taper it and will continue to do so for the next 8 weeks.

We saw the pediatrician today and his blood pressure was normal.