The Backround Info

So where do I start?? I guess I can start off with talking about the last 9 months.

Well, My husband noticed the seizures first, at the end of Novemember. He would tell me Evan was making a jerking move with his left arm. I told him he was crazy and that maybe he was just imagining things. I, in no way, shape or form, wanted to think there was anything wrong with my baby boy!

Then, on one of my nights off, It happened right in front of me. He was roaming around the living room with this glazed look in his eyes and both his arms jerking up. This lasted for about fight minutes and Evan then layed down and went to sleep. This was at 7:30 p.m on December 7, 2009. I will never forget the first time I seen him take a seizure!! I told myself, "okay i will call the pediatrician first thing on Monday." It kept happening though. He woke up early saturday morning and his arms started doing the jerking thing and again in the afternoon. Sunday morning comes and it happened twice in the morning. I decide that this is really scaring me and we call the doctor who tells us to take him over to children's hospital because what we are describing, indeed, sound like seizures.

We arrive at the E.R. and are asked a million, maybe even a trillion, questions. The E.R. doctor even went as far as to tell us we could put a gun to his head and he would insist they weren't seizures, but he would call a neurology doctor in anyway. The neurologist asked a bunch of questions and examined Evan. From what we were telling her, she was sure Evan was having seizures. The doctor ordered a CT scan right away and a ton of lab work and she admitted him into the hospital. All the tests done that night come back normal, so she ordered and EEG for the following morning. The EEG was a horrible experience for Evan and not because it hurt but because in order for them to put all the leads on him with out him stopping them, we had to restrain him. He screamed and cried so bad and I was crushed. I felt so horrible for him because he had no idea or understanding of what and why this was all going on. He only just had turned two not even two months prior yet. My poor little guy!

The EEG results came back ABNORMAL. At the time, I really don't think I truely understood what that meant. He had even had quite a few seizures while he was in the hospital and then it hit me, Oh my god, he has epilepsy!! How could this be?? Is this my fault?? Did i do something while i was pregnant that caused this?? I was devastated and all I wanted was answers. I spent hours and hours doing research on epilepsy and I hung onto every word the doctors said to me, but I still wanted to know "why" my little boy was going through this.

The neurologist started him off on zonegran and then a few days later we went home. He still continued to have seizures on a daily basis, so the doctor added trileptal, but that only made the seizures worse. We weaned him off of trileptal and the neurologist sent us to an epileptologist. That doctor ran a bunch of genetic testing to see if there was a cause for his seizures but those all came back normal as well. She added klonopin and keppra, but Evan was still having seizures everyday. So, the epileptologist added lamictal and still no changes. We then went into the hospital again to have an overnight EEG done and to push the drug dilantin in hopes that would be our answer. When we left the hospital Evan was very wobbly and could barely stand up straight, but didn't have a seizure for about 2 days. After 2 days, he started having seizures again, so we kept upping his dose of dilantin. Evan did NOT do well with this what so ever. He was way too drugged and everytime he went to go take a step he wopuld fall. I called up the nurse and said this just is not working we need to get him off of this drug, and that is what we did. We took him off of the dilantin. We then took him in for a spinal tap..the last of all the tests that could be done to find out a "reason" for his epilepsy..again this came back NORMAL..So Evan has idio-pathic epilepsy. There is no known cause for it and he just has it..