March 06, 2006

Just to catch you up...

Evan began having seizures (mostly complex partial seizures) on the left side of his body when he was only about a month old, so we started taking him to see a neurologist. He had an MRI which revealed a migration disorder in the right frontal lobe--basically a portion of his right frontal lobe didn't form right in utero. He was put on a low dose of Trileptal to control the seizures and has had it steadily increased as he gains weight or has breakthrough seizures. Now he is almost at the maximum dose for this medication.

He has most recently begun physical therapy because he is developing abnormal muscle tone on his left side. Interestingly, there is a neurological connection to this as well. When we started taking him to physical therapy, we also started thinking about second opinions to make sure we were looking at all possible treatment options. The second neurologist we went to felt Evan was having too many seizures on Trileptal and suggested we consider switching to a different medication, either Keppra of Lamictal. He talked about a few other treatments too, including a vagus nerve stimulator which is sortof like a pacemaker and brain surgery (focal resection epilepsy surgery) to remove a small portion of his right frontal lobe. In Evan's case he believes the brain surgery would be the more effective option and apparently this is not a severe type of epilepsy surgery--once you get past the idea of where they would be operating if we pursue that option!

The scary part is that he believes Evan may be a perfect candidate for the surgery. He recommended we go for a consultation with a neurosurgeon just to talk to someone who does that and see what they have to say while we continue trying to control the seizures with medication. We are not ready to talk to a surgeon and want to make sure we have a lot more information before we make that appointment, but we are getting closer. We will be seeking out a few more neuroloist's opinions in the next couple months and have been doing a lot of research.

So that is our current path. I have to admit, I have written the cliff notes version of this, but that is the gist of what's going on.


becster said...

We are all so proud of you guys.....Evan couldn't ask for a better family.
Love you

Mama Lisa said...

Thanks, that's nice to hear.