When we signed in at Neurology, I informed the receptionist of our 10am appointment. Her eyes widened and she commented that the doctor was already running a bit behind, but recommended that I mention it to the nurse when we were called back. Just a few minutes later, the nurse came to get us and as she checked vitals, I told her of our next appointment. She was honest enough to say that we would never make it and suggested that I call Neuropsych and let them know the doctor was running behind and we may be an hour late. The nurse took us to a room and before I could call Neuropsych, she returned and said that since the doctor was running behind, we could go ahead to our next appointment and then return afterward to see the doctor. I told her that Seth's next appointment was a six hour evaluation, so unfortunately that plan was nixed. I proceeded to call Neuropsych and was put through to the psychologist. He explained that they really couldn't complete the testing in such a short time frame and suggested rescheduling for another day. Here's where the hopelessness started to set in. I had pulled Seth out of school for the day, taken the day off work, driven two hours to get there... In the end, both departments pulled together and took care of us. We were able to complete both appointments and I have the utmost respect and appreciation for doctors that value MY time and situation.
We received interesting results from Seth's long-term EEG monitoring and other testing. Testing shows that the area of concern is the left frontal area, not the area of scar tissue as suspected. The left frontal area is the area that controls executive functioning - organization, planning, multi-tasking - all areas where Seth struggles. At this point, both of the neurologists we have met with feel that Seth may be a good surgical candidate, but it is likely that further testing will be required. Seth is the next patient up for review when the surgical team convenes in the next two to three weeks. His doctors will present his case, including all his history and testing, and the team will decide whether to move forward. If the decision is yes, things may start to move very quickly. Further testing would likely be scheduled and surgery could potentially be this summer. If no, we will explore other medications and treatment options.
Seth also had a medication change today to address some side effects from one of the meds he was on. He has been seizure free for exactly one month today, so I hated to possibly upset his stability, but he was having some serious side effects - problems with thinking, information processing, word finding. We will monitor closely and pray for coverage with this new med, which has significantly less side effects.
Seth worked hard all day to complete the evaluation. The evaluation was only about a half hour late starting and they worked up until lunch. We broke for lunch, and Seth and I managed a little playground time before heading back indoors to complete the afternoon testing. Seth was happy there were no electrodes, but said that school is more fun! We will have results from the neuropsych evaluation in about three weeks and will have another follow up around that time.
