My daughter was just diagnosed on April 11, 2012 with AS. She turned 4 months old three days later. It all started when I had my second ultrasound in Sept. 2011. I wasn’t approved by insurance to have another ultrasound because we had already had one early on to figure out my due date. I pushed for it because I really had strong feelings that I wanted to make sure everything was ok. It just so happened that I had a check-up where my uterus was measuring a couple weeks bigger then it should have been and thus I was approved for another ultrasound. It was then that we learned the left and right ventricles in our baby’s brain were enlarged and it was then that we learned we were having a girl. We were referred to a specialist who confirmed this in early Oct. He asked a series of questions and even did an amnio to test for some of the TORCH tests. Everything was negative. We didn’t see that specialist again until early December. At that time he said the ventricles were much larger then before and that we were going to have to go to a much bigger hospital to be delivered by c-section. He thought the brain wouldn’t be able to handle the birth canal. After meeting with the doctors at the hospital we were to deliver at in mid December, we also had an ultrasound there so they could get their own look at everything. Her ventricles were bigger yet but they said the size of her head was the size of a normal baby at that gestation (37 weeks). They told me we would be delivering naturally! We were overjoyed! They also noticed the amniotic fluid levels were below the range they like to allow and asked if we wanted to have a baby that day! We were scared and excited at the baby girl we were going to meet and the troubles we were going to encounter. After being induced, our little baby girl, Eden Elizabeth, was born 5 lbs. 15 ozs. 19.5″ long. She was breathing on her own and doing so wonderful. The doctors got to work on trying to figure out what was going on in her brain. After looking at her brain and deciding she wasn’t going to need a shunt right away, they decided to see if they could determine anything from the back of her eyes. That’s when they found what they thought were scars on her retina and started doing more tests to determine if it was viral. After all the tests came back normal (and several days in the NICU), they took a closer look at the retina and thought maybe it could actually be lesions and started considering Aicardi Syndrome. She has 3 lesions on her right eye but there are dark patches all over the outer part of the retina way out in her peripheral vision that the doctors have yet to be able to explain. Her left eye is completely healthy. We were sent home a couple days before Christmas and told to just see how she develops and watch for seizures. She has developed beautifully. She started smiling around 1.5 months, cooing shortly after and eventually laughing and reaching for things close by. Around a month old we saw the ophthalmologist and had another MRI. There were no changes from the time she was born. She started having seizures on Thursday April 5th. Eden’s seizures/Infintile Spasms come in clusters. She clinches for a second and then relaxes for about 5-10 seconds. She does this over and over for as long as 7 minutes. She has these clusters of infantile spasms up to 3 times a day. I really didn’t even think of it as seizures. I guess I was in denial. It continued everyday except Sunday. Monday I finally brought myself to make the call to the doctors. We were scheduled for an EEG by Wednesday and diagnosed with Aicardi in our apt. He decided to start her on prednisone (a steroid) to try first and prilosec (to protect her tummy from the steroid). After four days of being on the steroid and it not working, we realized the pharmacy had a mixup and she was taking the wrong dosage. So Monday the 16th she had her first dose of the correct amount and other than one cluster about an hour after, she hasn’t had another seizure since. Two weeks after starting the prednisone we have started tapering her off of it after another EEG showed still no hypsarrhythmia. So far she is still seizure free. Here are some pictures of Eden (1st smile in zebra outfit, red and white shirt she is 3.5 months, and our family photo at Easter 2012). Enjoy! And if you want to see more of our family you can visit our family blog at www.brianuglum.blogspot.com.