September

Over the past couple months, it has felt as if we've started over on this journey.  Here is an overdue recap of September.

A couple of weeks after school began, I was contacted by Sophie's teacher to talk about new concerns at school.  In essence, she has made huge strides emotionally and socially but academically it has been a different story.  Her teacher was concerned that Sophie has begun falling quite behind in school, in fact, information that she knew before (and that we believe she still knows) had begun to challenge her.  It is as if she has become unable at times to access letters, words, numbers that we know are there.  Her teacher noted that it is clear she is trying, but for some reason can no longer find the answers.  This concern led us back to Sophie's neurologist who ordered an EEG after a great deal of phone tag.

Our worry was that although we are not observing seizures regularly during the day, perhaps she was having them at night and we just weren't able to see them. When she had her original EEG, they had reported that her sleep cycle was when her seizures were most active, but that we only worry about seizures when they can be dangerous or disruptive (walking down stairs, swimming, swinging from monkey bars, or trying to learn in school), and since her seizures haven't been disruptive or apparent while awake, her doctor hasn't worried.

However, although her seizures aren't disrupting her activity, we did think they were disrupting her sleep.  She has continued to have enormous mood swings (to which her neurologist always replied, "Well, Depakote is a mood stabilizer", offering no other suggestions, compassion, or understanding), and she continues to really need daily naps and to be exhausted after school.

Her neurologist's resistance to really care about her full life and whole person is what motivated us to begin considering a new doctor.  First, though there was an EEG to attend.