We are still at the hospital and Pi's new meds are not getting rid of the small seizures she is still having. Today we are doing a 24 hour video EEG to make sure these 'looks' are in fact seizures and not a product of reflux. I feel very sure they are not a product of reflux but I'm no doctor. We are doing a couple of tests to confirm or rule it out. We will do a barium test tomorrow so they can see if any food is coming back up and causing her to make these funny looks. They will also do a ph probe to determine if reflux is the cause. If they rule out reflux we will move on to the next step.
For some reason, we both have been very emotional today. We are frustrated and scared. We have done so much research and fear the possibilities there may be a genetic disorder as well as the acc. These are commonly linked with acc and it looks like she may have a lot of the symptoms of one of them We are praying this is not the case.
It looks like we will be here until we can figure out exactly what is causing
Thanks again for the prayers, we need them.