New to the Group, epilepsy at 12 weeks old

Hello Parents with Children with Epilepsy, Been a member for a while, but never posted or replied to any posts. Wanted to share our daughters story, as it will undoubtedly apply to someone in the future. Yes, it echoes stories already told, but worth the read. Twin A, Savanna, developed normally with no sign of any disorder. Born first, by c-section, with apgards 9/9. Very healthy. Around 8 weeks we noticed something seemed off. She stopped smiling and just looked out of it. Noticed some spasms, but didn't realize what they were. At 10 weeks, spasms were becoming more noticeable. Pediatrician wasn't convinced they were anything abnormal - anyone heard that one before? At 11 weeks, we knew there was a real problem. We were able to record an episode, and showed it to the pediatrician. Then she actually had a spasm in his office, next thing we knew we were off to the ER. Her spasms increased dramatically to more about 1 every other hour over the next day or so. 3 days later, devastating news, Infantile Spasms and complex partial seizures, from left temporal-occipital region. We had no idea what that really meant, as we experienced a whirl wind of testing for every possible cause that may have provoked the seizures. To this day, she remains idiopathic, meaning we don't have a reason why she is having seizures. We are currently sequencing our family genome, looking for variants and mutations that may have caused the problem or may be keeping AED's from being effective. We started ACTH, seven days later, Sabril. Two weeks later, IS was controlled, but partial seizure activity still existed. As one would expect, EEG indicated severe slowing of brainwaves. This lead to complete loss of all milestones, muscle tone, and even ability to swallow properly. After a battle with double pneumonia that nearly killed her, g-tube placement which remains to this day. Honeymoon period for about 6 months during which we relocated to Houston Texas area while also engaging in early intervention therapy for the developmental delay. August 2012, complex partial seizures started. Within a week, her seizures spiraled out of control. She was refractory and responded to nothing but extreme sedation. Her seizure onset was focal in nature and she was a candidate for epilepsy surgery (brain resection). Prior to the surgery, she was completely out of control. We barely slept as we employed pulse-ox and apnea monitors while she slept, which was around 20 hours per day. She only weighed 20 pounds, but everyday, she was taking 2000mg Sabril, 30 mg of Onfi, 350mg of Keppra, and still needed diastat and Ativan at times. It was certifiable insanity. Numerous ER visits, all ended in a complete waste of time for all parties. Epileptologist was out of the country for 2+ weeks while we battled this situation without much narcotics or real help. (Never again will we find ourselves in that situation) October 24, 2012 she made it through her first epilepsy surgery, during which she underwent 2 resections that removed the majority of the dysplastic tissue where the seizure focus resided. She lost a lot of blood and was giving the doctors a lot of trouble with respect to keeping her healthy during the surgery. 4 months later, she is engaged and able to participate in life. We are moving full steam ahead with all the therapy related to helping kids with global developmental delay. Without a doubt, every single aspect of her life is better. She is still having an occasional seizure, but the episodes are not nearly as disruptive as those prior to surgery. Most likely, she will have another surgery to remove all abnormal tissue left in during the first surgery. This is a brief synopsis of our last year. We also have twin B, a boy, a 4 year and 3 year old boys - all typical. It has been quite a journey. More details about how it all went (and continues to go) for anyone curious can be found at www.savannalininger.posterous.com -ken