Friday, July 24, 2015

Miss Chatterbox + Pyridoxine Update

Mira has been having a couple of great days - very vocal and animated all day long. Today she has been exceptionally vocal. If you listen to the video (ignore the microphone picking up the creaking floor and her squeaking Zippie wheels) she has been basically doing this for hours. She is certainly more vocal when we she is moving around in her chair, but as I am typing, she is still making the same noises, just sitting and playing with her toy.

We are a little over 45 days on the pyridoxine at a decent dosage and so far, I think the affect on Mira's over all disposition has been very positive. She is increasingly vocal, happier, and smiling more. She still has her good and bad days, but looking at everything globally since the beginning of June, I think there have been more checks in the positive day column. In terms of seizure control. she has had a few seizure-free days and even a few back-to-back  SF days, which is more than she has had in quite a while. Complete seizure control would be ideal (if the theory holds true) but we are a long ways off from that right now and I am certainly staying realistic. My hope is that her positive demeanor and low seizure days start to outnumber her rough days as we keep moving forward.

I did exchange some emails between one of the authors of one of the articles that I have read and his response was fairly guarded and reserved. He said it would be highly unlikely that someone would respond to pyridoxine a second time, after being seizure-free on the first trial. Although this has happened to patients he has seen in clinic, on this type of pyridoxine therapy. Stranger things have happened I suppose. Mira will continue to take around 25mg/kg per day, indefinitely. Again, I am just following historical patterns with her and should history miraculously repeat itself, we would see drastic improvements in seizure control around the beginning of September.

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