Monday, November 21, 2016


I know I've said it before, but Sarah and I have learned to not have any preconceived notions about how Mira's neurology appointment will end up going. In the past, we think we are going in to talk about one thing and end up getting spun 180 degrees and discussing something completely different. We have resigned to the fact that we have no idea what to expect - we have some questions and discussion points lined up, but typically end up only briefly touching on those, if at all.

However, her appointment on Thursday was actually one of the more straightforward meetings we have had over the years. Mira's weight certainly came up, despite putting on 4 pounds over the past month, she is still in the lower 20th percentile for weight. The diet we initiated late last month is starting to show - she is gaining weight and it is helping, but she has a ways to go. Her neurologist no longer seemed concerned about it - we have taken the necessary steps to boost her calories and we all think we are headed in the right direction with her. In terms of medications, we didn't make any changes, as her seizures seem to have decreased some since our last appointment back in May. Overall, Mira's demeanor has improved over the past few months, despite having some awful days here and there. That being said, we didn't think it was necessary to change anything from a medication standpoint.

We did have a discussion about pyridoxine, which was interesting. I have read extensively about it over the years and we have done trials with Mira in the past. I explained to her neuro that she does respond very positively to high dosages to pyridoxine - we have not discovered exactly why, but the only two clinical diagnoses that I am aware of that respond to high dosages are pyridoxine deficiency and homocystinuria, neither of which Mira has a genetic marker or indicator for. Yet, somehow she responds positively to it, thus we have been keeping her on dosage of it for a while. I tried weaning her off of it a few months ago and she was a complete irritable mess. There are concerns of peripheral neuropathy, but it is very rare. I am much less concerned about the side effects of pyridoxine, than of the countless pharmaceuticals she has tried over the years. Her neuro certainly wasn't against it and admitted that we were more of the experts on it than he was, but he was intrigued to understand and research more about it. It was refreshing to walk out of the appointment not having any major concerns, scheduled additional testing, or unanswered questions. I have a lot of respect for her neurologist - I think he is very open-minded and honest about everything - he always has been.

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