Cohort C has been an interesting experiment. We did indeed see the “grace period” during the transition with fewer and shorter clusters.
He has still had fewer clusters (a bit longer though) and his seizures today have been less intense. Interesting. So good results but different results from A.
We are going to try flipping back to A, validate the “grace period” again and then tomorrow try flipping back and forth between A and C every other dose. MxBiotech hasn’t tried this before, but have had multiple patients report similar “grace periods” when transitioning. We are game to try something different like this because we still have a few weeks here to fine tune. Maybe we can capitalize on the positives of both A and C by testing this out.
It takes a couple days of data collection and observations to make these adjustments. Believe me, I wish this was a magic bullet, but as I have explained before, epilepsy and medicine often don’t have a simple path.
Wyatt has been doing pretty well cognitively and developmentally over the past few days. In fact, he discovered himself in the mirror today! This is something we have been trying to have him do since he was about 8 months old. Right now, he is playing with a talking flashlight. He is very alert, vocal and smiley.
However, for whatever reason, he wasn’t very impressed with the beautiful waterfall we saw yesterday. He is a tough sell.