Like almost evryone with a child with AS i never heard of Aicardi Syndrome before. Just the sound of the Dr telling me it was frieghtening because you always hope it will never be your child. I am a young mom, 20, and my daughter is now 5 months. During my pregnancy i was going in for routine check ups and seeing how my little girl was developing. One day i got a call back from the ultra sound technicican telling me that the corpus callusom of here brain was missing and never developed. They told me she was diagnosed with Dandy Walker Syndrome, and she may have some development problems but for the most part she will grow, learn, talk, and walk like she has nothing wrong with her. So that was a relief. I delivered her full term, 39 weeks. She had a ultra sound done on her brain the next day in the hospitol and they confirmed she had Dandy Walker. After about 2 months of her growing and starting to smile she one day started having seizures, called clonic tonic seizures. They prescribed her Keppra and they stopped for a few weeks. Then one day around 3 months old is when the infantile spasms began. Her doctor added on Topamax but it didnt seem to help. Finally i took her in to a childrens hopsitol and that was when they diagnosed her with A S. She had the spots in her eyes, uncontrollable seizures and the fact that shes a girl that told them this was the right diagnosis. I cried for days thinking,"no not my baby, she doesnt deserve this" but i soon got it together and knew that no matter how she grows up she needs me there for her and i had to be strong. Now she is on a streiod, Keppra, and topamax. The infantile spasms stopped for a few days but eventually came back again. In those few days of no spasms her smile and laugh came back, it was the best feeling. But when they came back her smile was gone again, and thats where were at right now. Shes on a new med called Lorazepam and all it does is make her sleepy and when she wakes up she still has spasms. Hopefully we get the meds right soon, i dont like to see her hurting. Please keep cayla in yours prayers as well i keep all your daughters in my prayers. And i wouldnt mind if another mother would please call (909)232 3793. We live in California and im still confused by all this Aicadri Syndrome.