I am the father of a beautiful 4 month old – Piper. We believe she has Aicardi Syndrome (the doctors have still not confirmed the diagnosis because the opthamologist did not see the typical lacunae on the retina, but she does have underdeveloped optic nerves). My wife and I are still somewhat overwhelmed by the situation. She was born with complete ACC, progressed greatly up until 3 months when she had her first seizure. Over the next month, the neurologists would not categorize the clusters as infintile spasms because they did not believe that a child as young as her could have IS, hers started out with just a funny face, and the EEG did not show typical hypsarrythmia. We finally got transferred to an epileptologist at Emory University in Atlanta who said that there was hypsarrythmia, but it was very unusual because it was only on the right side of the brain. His words were that the left side of the brain is remarkably normal.
Currently, we are still trying to control the spasms. We just started the Ketogenic diet and if it does not work, will try Vigabatrin.
I appreciate this site being up to supply more information. I will add more as we know more.