Day 2- Dakota didn't go to bed until 3am last night! He woke up around 9:20 and had one of his stronger seizures then decided to stay up. The second day wasn't to bad. They collect some blood samples and also did a urine sample. Dakota filled that pee bag like it was his job. He had a total of 10 seizures. I don't know how but he continues to be happy. I would do anything to take away the discomfort.
Day 3- Again he didn't sleep very well. He had the same pattern as the night before. His doctor seems to think it is the environment. The doctor came in to go over the plan. We are going to be weaning Dakota off the phenobarbital over the next 3-4 weeks. This will allow us to get a better understanding of what his new base line is. If his seizures increase dramaticly then we will stop the wean. After we get a feel for the new base line we will decide if we want to add a medicine. His doctor was talking about adding Vimpat, i'm still doing research on it. He is still on onfi and the ketogenic diet. The doctor said its hard to tell what type of seizures he's having. They use to come from one part of the brain (partial) and now they are coming from both sides (generalized). What the eeg shows doesn't match with what his body's physical reaction is. He said that if anything he'd have to say they are close to tonic seizures. If we feel he is doing ok on just the nofi and diet then we can stick with just that. As long as hes not having a 100 seizures a day and isn't in a epileptic status. He is having some seizures that we don't see but they are only seconds long. We were able to go home today! He had a total of 4 seizures for the whole day, which is great! He is also sleeping soundly as I sit here typing.