Good Neurological News

Today was Willa's EEG and Neurology consult at CHOP. Valerie, Christie and Willa went over for the EEG early in the afternoon and were there to bear witness to Willa's 20 minutes of screaming. (she hates EEGs for some reason). I met up with them at 3:45p.m. for the neuro consult and basically everything looks - hold your breath - good. What does that mean? Well, on this EEG they saw no indications of seizures and the doctor said at our next visit she'll read the first and second tests - since it's possible that they were not interpreted exactly correct but were not available today for her to see. It is apparently very very difficult to read neo-natal EEGs and when she sees the first two, plus today's, plus the EEG that we'll have in three months, a full history will be known and the course of therapy can be adjusted accordingly.

As for her current course of therapy, the reccomendation is for us to immediatley wean her from the phenobarbital. Her 2.5ml per day will drop to 1.0ml for a week, and then we'll discontinue it completely. The reason behind this is that her current dosage has not increased while her weight has doubled, thus effectively weaning her from the medicine already. And at her current dosage, it really does nothing. Furthermore, the doctor said there is recent research questioning the effectiveness of using PB at all in these cases, even mentioning that she has "...contributed to some of that literature" (perhaps through her own research).

At any rate, we where extremely impressed by the level of care and the approach that was taken. As mentioned, the follow-up visit will be in three months. At that time, tests will be repeated and Willa's progress will then be certain.