Results

We do have some preliminary results of the EEG. Dr. Mikati said the seizures are starting from the left side of the brain and then spreading to the right. We asked if he saw hypsorhythmia (a devastating brain wave pattern due to spasms) and he said he did not. However, he did say that the EEG didn't always look normal. That is a change from November and is a bit disheartening. Abnormal EEG patterns (when you aren't having seizures) are associated with developmental and cognitive issues.

The video of the seizures hasn't been super clear so Dr. Mikati is unsure if a spasm comes after this first Left/then right seizure or not. This is important to know as the treatment course would be determined by this clarification.

Based on what he has seen so far he is recommending we introduce Topamax. He is also having us begin to taper Sabril due to the vision side effects. He wants us to work with the nutritionist here to move towards the ketogenic diet. I feel ok about that- it certainly won't be easier than our current diet but, it is more concrete. For example you can do a urine test to check the amount of ketones. That then helps you know how to tweak the diet. I think this part of the ketogenic diet will be easier for me- knowing if I am doing it "right" or not.

We still haven't captured a sleeping spell and we really need to do that. I am unsure of how or when that will happen as those are harder to predict. They want to figure out if those are seizures or a postictal phase. The can't treat something that they don't understand. The EEG is the best way to do know how to deal with these spells. We are very concerned about them and I am hoping for some answers.

We forgot to ask to go over the CT with Dr. Mikati but, will do that the next time we see him. We are happy that Dr. M is "on" this weekend so we will get to continue to see him. We asked how much longer we would be here and he said probably about 3 more days. Whew! He said kids in similar situations to Oliver usually take about that long. Even though we aren't jazzed about being here that much longer we are thankful for a chance to get such good healthcare. We know medical conditions like Oliver's are complicated and take time to sort out. We certainly don't want to rush the process. It will be SO worth it if he is seizure free! That is the goal I keep reminding myself of!