Jackson had another Video EEG (long term seizure monitoring) this week. We only had to stay over one night this time, although the doctor said we could stay longer if we wanted to to try to get some longer episodes. Well, no thanks doc...I think 24 hours is plenty and there is no guarantee that we will see anything anyway.
So they did catch seizure activity again this time. The good news is it was less frequent than the last time and less (I forget the exact word he used) organized? than it was last time. (Last time he was having about 40 a day!) A big cluster of seizures started around 6am, which happened to be the time that he was woken up by someone taking his blood for labs...poor kid, what a way to wake up! Also, like last time, the seizures were centered in the left frontal lobe. So he is going up on his lamictal again, and hopefully things will improve even more.
One interesting thing that happened is that we were referred to the palliative care clinic by the neurology nurse practitioner. I was surprised about that but they do a lot of care coordination for complex special needs kids there, not just end of life issues. I met the doctor and he is really a lovely man. It was kind of funny because people kept asking me "are you ok with this?" but it isn't like anything with Jackson has changed. And if someone can make my life easier I am all for it.
We are leaving on a vacation on Tuesday. We are going to Minneapolis with stops both ways in Wisconsin so we don't have to drive too far in one day. Hopefully Jackson (and all of us) will have a good time. He was not too impressed with the trip we took last summer.
