The visit to the neurologist yielded some enlightenment.
- C. has lost weight. Now given that my running quip is that she is so thin she's "two dimensional", this should have disturbed me. But the doctor glossed over it, so I'm actually relieved. Any additional kilograms would test my sensitive back and prolapsed pelvis. And given that C. feeds herself - at least, puts the spoon in her mouth herself - I can presume she takes as much food as she wants and isn't hungry.
- We learned that when the cause is genetic, the symptoms of neurological impairment cannot be significantly improved by medication. Since C. probably is a genetic case, the doctor warned us that all our dedicated drug-tweaking will not produce seizure control or cognitive improvement. Not exactly welcome information. But we were both surprised that no doctor ever shared this with us before.
Then we all agreed that the next step will be weaning C. off the Inovelon which never seemed to help her throughout the three years she's been taking it. We'll go down from 400 mg twice/day to 300 mg twice/day immediately. Then after one month we drop to 200 mg twice/day. A month later to 100 mg. And then after a month, we're Inovelon-free.
I demonstrated C.'s MEDEK walking for the doctor. She seemed duly impressed with the way C.'s right leg steps independently.
The doctor said C.'s most recent blood test results were fine. In fact her hemoglobin level was spectacular. (14+). But because we've had C. on the Modified Atkins Diet for so many years (lost track - at least ten), she is sending C. for an abdominal ultrasound to check for kidney stones. Apparently this diet, which is part of our anti-seizure arsenal, can cause stones.
All in all, I have no complaints about the doctor's handling of C.'s care. She's a bit dry and stand-offish. But unlike some neurologists we've met, she doesn't rush us out of her office. In the past I've sensed that they aren't comfortable treating the hopeless cases, like C. And after all why should they be?
Bottom line: it wasn't an uplifting experience. I had hoped that eventually our drug changes would deliver some cognitive improvement - even a smidgen and we would have thrown a party. Now, disillusionment reigns.
A post about the geneticist's visit will follow shortly.