Neuro appt

Last week, Eve had her semi annual neurology appointment. After some debate,we ended up taking Seamus to daycare (rather than bring him on the long car ride) which turned out to be a good thing. Then Jim, Eve, and I headed to Springfield for the neurology appt. Eve started crying in Pittsfield. We pulled over and checked her out. We couldn't find anything wrong. So we carried on figuring she'd settle down in a few minutes. She cried for the next 1.5 hours. Nonstop. Until we got to the doctors office. We think she was scared, but have no idea why she wouldn't calm down. Most of the trip is highway driving, and we kept thinking, "Surely she'll stop any minute. Surely she can't cry the whole way there." She also cried a lot at the doctor's office and finally relaxed when she realized we were just talking with him and there was no procedure. The drive was an awful, incredibly stressful experience. I felt so helpless. I just cannot imagine this being our new reality for car trips. Most of Eve's specialists are 1.5 - 3 hours away.

I asked the neuro if we could see him once a year instead of two times (yes). I mentioned the possible seizures and he didn't seem concerned. The last episode was nearly two years ago, so he didn't feel this warranted anything other than monitoring. He also upped her baclofen, adding two doses of a half pill (morning and afternoon). Hopefully this will relax her legs and make diaper changes easier, but we need to call if there are side effects (most likely sedation). Finally, he recommended an OTC medicine for motion sickness and gave us the dosage. He said that mito patients often have migraines, and that motion sickness goes hand in hand with migraines.  I thought that was interesting.  The neuro noted her hands being more clenched and that she has trouble holding her head up.  We are to call if anything changes. 

The trip home went pretty well.  Eve watched a DVD and Jim slept.  I enjoyed the fall foliage.  Eve has been doing great in the days since the appointment.  We haven't noticed any changes yet with the increased dosage of baclofen.  She is still enjoying school and loves to laugh at her brother.