Friday, August 5th, Day 47 Update

Hello all,

Tori ended up NOT sleeping at all Thursday night and early Friday morning and she finally went to sleep today at 5:30pm or so... She was awake for about 34 hours straight and was agitated the most during early Friday morning. During the day today she was relatively calm but she just wouldn't sleep and we tried Valium a few times to help to no avail. She ended up going to sleep on her own.

We also had to put the NJ Tube back into Tori's nose and it runs all the way through her stomach into her small intestine. We began her feeds again through the NJ Tube to bypass her stomach and we are sure hoping that will work for a while. The doctors are still stumped on some of the stomach issues Tori is having.

One of the neurologists who reviewed Tori's EEG data told us it all looks normal and that the spikes presented during one of Tori's rythmic twitches are caused by Post Anoxic Myoclonus. This Web Site provides information on various Myoclonus classifications. This comment seems to describe much of Tori's activities "Frequently myoclonic jerks occur during an active voluntary muscle contraction ("action myoclonus" eg after lack of oxygen to the brain ("Post anoxic myoclonus")". Several other neurologists are supposed to review the EEG dat as well so we'll see what their analysis is.

I will also speak to the therapists on different types of medications to combat the Myoclonus including Piracetam which has offered great results to many people according to my research.

Thanks,
-Tim