Lauren is still doing amazing (which translates into no seizures)!
This Tuesday I am taking her to Primary Children's for a 24 hour EEG( brain waves). They will hook her up and monitor her for 24 hours (it will be so fun to entertain her that long, she is allowed to move about 2-3 feet in bed). The main thing we want to see is what is going on with her brain through the night or while she is sleeping. These past few years the night has been one of her hardest time. Even during somewhat good periods of seizures (1-2 granmals a night in her sleep) as soon as she would go to sleep her seizure activity picks up and she has lots of sub-clinical seizures (seizures you can't see but the monitor pick up on). When she is in a bad state she will have almost constant seizure activity showing on the EEG at all times. Overall her EEG for her age has been very abnormal. Her first EEG she had when this all started was normal but quickly it went very abnormal. If I understood EEGs better I could better explain all of it, but I don't. I know that she has back ground slowing for her age which probably goes along with her developmental delays. So I am very interested to see if there will be any improvements in her EEG that go along with this good period she is going through.
I am so nervous about this! I know I will be up all night watching the monitor (even though I don't fully understand it, I do know the waves go crazy when she has any type of seizure). I know it should not matter what the EEG shows and I should just focus on how good she is doing clinically. But over the years the EEG has served as such a guide into how she has been doing. I am telling myself to not get my hopes up that most likely it is going to be very abnormal still, for that is what the doctors have told me is always going to be her future. But I keep letting the words "what if its a normal EEG?" creep in my mind. "No that is sooooo crazy and unrealistic" I think and I quickly get mad at myself and try to prepare myself for the worse case, because that has been the reality of Lauren these past 3 years. I don't know why I do this, it is a constant battle going on in my head.
One of the reasons we are doing the 24 hour EEG is decide if she should have the VNS surgery (vegas nerve stimulator). Her Neurologist thinks it would still be beneficial to have it implanted because he doesn't believe this good period will last and her brain would still benefit from the surgery. So that is what we will be talking about at our next Neurology appt after we get the results from the EEG. I am praying so hard that there is improvement in her EEG and this is not a decision I will not even have to face.