Monday, September 19, 2011

To EEG or not

A decision needed to be made.  There has been a discussion going on in our house for the past week or so.  With my recent improvements Mommy and Daddy have been talking about my upcoming EEG.  After much discussion, soul searching, praying and talking with family a decision has been made.  Mommy picked up the phone late Friday afternoon and canceled my scheduled EEG. 
For those who are not understanding is the long and the short of it.....
I'm doing better there is no question about that.  My seizures have stopped.  I'm currently coming off 2 anticonvulsants as they have/had no positive impact.  So what would another EEG show....well most likely no seizure activity and my current encephalopathy (abnormal brain waves that cause severe developmental delays).  Our thoughts are this.....we know that most likely my encephalopathy is still there and still the same.  We are feeling that coming off these harsh meds has allowed me to make the strides that it have recently made.  The doctors have made it very clear that since my seizures have stopped they have no interest in trying to improve my envephalopathy as they are not sure how or if they can.  So an EEG will only show what the doctors are not able to or willing to treat.  So what is the point of having one.
So we decided that I, Nezbah, will direct the course of my treatment.  I'm doing great considering my situation and we will follow that road.  We will focus on the good times we are having.  Step back from all the doctors and focus on positive treatment (PT/OT/Chriopractor).  I am choosing to just live now, to be a baby not a diagnosis and my family is thankful that I am in a position place now that they we can do that.

We will take each day as it comes!!!! 

1 comment:

jamie madron said...

Amen, sista!
You totally rock, Nezbah<3 u