Sunday, August 28, 2016

A Good Week Overall

After having a very irritable weekend, Mira had a much improved week. She managed to have some fussy moments, especially on the bus rides home (which I will get to in a moment) but overall, she had a positive week. I was in New Hampshire part of the week, which had equally hot weather as we have been experiencing here in Kansas City, minus the rain. We have had some serious downpours here over the weekend, which has caused flooding throughout the city, even down at our local shopping district. We are expecting more rain this week. Despite being trapped indoors most of this weekend, Mira has been in a pleasant mood and has been having a minimal amount of seizures - just a lot of myoclonics in the morning mainly.

In terms of the bus rides, I'm not surprised that Mira isn't tolerating the commute to and from school this year, as the length of time that she is actually on the bus has increased dramatically. Thanks to even more budget cuts this year (thanks to our horrible Governor Sam Brownback - please feel free to email him) they have consolidated bus routes and schedules, so that Mira ends up being on the bus for an hour, each way, to and from school. The route the bus takes for the school year requires them to run in completely different directions to pick up every child on the route. Mira is the first one on the route and the last one off on the way home, so she ends up being on the bus the longest. This does not make her happy. We are going to contact the bus company and see if they can rearrange the pickup sequence or see if something can be done.

We are continuing with the pyridoxine, moving her up to about 25mg/kg, which seems to feel like the sweet spot for her for now. I noticed a change in her moodiness once we bumped up. I continue to find articles regarding pyridoxine's benefit to a multitude of ailments, including epilepsy, but am still trying to find an exhaustive source to understand all of the exact functions (mainly enzymatic - there are over 100 individual functions) that B6 actually performs. It is a very complex vitamin and I want to know as much as I can about it and why it has a positive effect for Mira.

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