Ryan update

We had our appointment with the Pediatric Neurologist down at the Children's Hospital in Denver last Thursday. Long drive down there and much longer drive back because we hit rush hour traffic. Very nice hospital that puts lots into being kid friendly. After talking to the nurse, the doctor came in and told us that the EEG came back normal and that they think he may not have any more seizures but if he does to give them a call. We asked all of our questions and kept thinking, "Couldn't our local doctor have told us this?"
Then on Friday, Ryan kept stopping what he was doing to tell us that he thought he was going to have a seizure. I would go with him to lay down and nothing (that we could see) would happen. I thought he was just worried about having another one because we had been talking about them. Later, he was eating and fell over onto me and then was fine. He did this several more times and once when he was standing up and I watched him stiffen and fall straight backwards, I knew something was going on. It was almost like the seizure started but stopped before he started seizing.
That night, he was scared to go to sleep in his bed and wanted to sleep on the floor because he was afraid he was going to fall off his bed if he had a seizure. I really felt bad that he was living in fear of another seizure. I tried to make him feel better by telling him that the doctor didn't think he was going to have anymore seizures and by making a roll to place next to him to help him from falling off.
Saturday, he woke up and didn't say anything about thinking he was going to have a seizure. After breakfast he was climbing up on the couch to sit next to me while I was nursing Luke when he suddenly stiffened, fell back, and started seizing. Christopher held him and he seized for about 45 seconds to 1 minute. Then, he cried and was having trouble with muscle control. After maybe 5 minutes, he was back to normal.
We called the Neurology dept at the Children's Hospital but since it was Saturday, we had to have the doctor on call paged. About an hour later, they called back and let us know that since he had a third seizure we should put him on meds and we could do it then or wait until Monday morning and call back. We decided to wait and Monday morning we called again. After describing everything that happened Friday and Saturday, the nurse talked to the doctor and the doctor called us back. She agreed that he should start on some anti-seizure meds and called in a prescription for a medicine called Keppra.
I talked to the nurse about all the side effects that included tiredness and behavior changes. I started to research this med and found that depression, fatigue, and irritability were also side effects. After reading some message boards, I found out that adults who are starting this med have experienced some huge behavior changes that they call it "Kepprage" because they bite people's heads off. A lot of parents discussed severe problems like anger, sleepiness, and even depression. Not something I want for my little boy! I talked with Christopher, Bob, and my Aunt Rebecca and decided I also wanted to talk with my pediatrician before I started him on the meds.
We had an appointment with our doctor Tuesday afternoon. I talked to him about the seizures that Ryan experienced Friday and Saturday and asked lots and lots of questions. He looked up the risks of side effects and said that all the side effects had about a 9-12% chance. The doctor was very helpful and supportive. I voiced my many concerns about the side effects changing Ryan and we decided that there would be no harm in not starting the meds right now. Since Ryan is becoming more aware of an oncoming seizure, his seizures are short and infrequent and he is able to recover so quickly, and we have a med to help stop a seizure if it lasts too long, the doctor agrres that if we are not comfortable with the risks of this medication we can keep him off of it unless the seizures get worse.