October

On October 2nd, we awoke bright and early at 3:00 am to begin our EEG day.  Sophie was such a trouper, we started with cartoons and cereal, then on to Walmart at 4:00, Denny's at 5:00, and back home at 6:00 to meet Joe and Wendi for the morning.  After taking Wendi to school, we went to the hospital for the test.  The test went well, and she went right to sleep when she was supposed to.  At the end of it, the tech (who also did her last EEG) noted that it appeared the Depakote was doing what it was supposed to and that although she did see some activity, it was nothing like last time--hope at last.

A few days later the nurse from the neurologist's office called to let us know, "There was ongoing electrical activity in her brain, but it was not absence seizures so her medication would not be changed."  Huh?  Unfortunately Sophie's neurologist was on vacation and his partner could not answer any of our questions.  The response to my many phone calls and questions was that he hadn't reviewed her previous EEG and therefore could not judge how/what changed.  (Could he not look it up?)  After a great deal of phone tag, the partner agreed to order a Neuro Psych consult based on the information from Sophie's school regarding her regression academically.

It is important to note that there are a number of "co-morbid disorders" associated with epilepsy.  This means illnesses that are commonly present when a person has epilepsy.  Some are ADHD, anxiety, and mood disorders; the idea was that perhaps these were what was causing the issues at school since they believed it was not the seizures.

At the same time as the Neuro Psych evaluation was finally ordered, I began my search for a new Neurologist who would be more attentive to Sophie's full life experience rather than just caring if we "see" seizures.  I quickly discovered that Lurie Children's Hospital has an Epilepsy Center with Epileptologists who only work with this illness, school liaisons to help with 504 plans and IEPs, and a holistic approach.  We were able to get an appointment rather quickly at a satellite clinic in Gurnee Mills, and things have truly taken off from there.