Tuesday, August 11, 2015
Is the Honeymoon Over?
After having some very positive stretches last month, Mira seems to have fallen back to baseline over the past few days. She had a succession of days, a few weeks ago, where she was vocalizing a ton and was full of energy, even having times where her seizures were nonexistent or very minimal. It was all looking very promising, even up until the weekend. The last few days however, have been the exact opposite. She has all but clammed up and hasn't babbled for 4 or 5 days now and her seizures have come back in full force.
She woke up Monday morning having a steady stream of intense myoclonic seizures, one after the next, every 10-15 seconds. It went on for 30 minutes or so. A few hours later, she had 2 big tonic-clonic seizures that completely wiped her out for the rest of the day. Her temperature swings have been drastic too - clammy, cold hands and feet for the last few days. She woke up this morning, much like yesterday, with more myoclonics and another tonic-clonic this afternoon. Today she spent almost the entire day sleeping. She seems completely out of it - very quiet, spacey, and consistently sweaty when she has been in her chair. The brief times when she actually was awake and in her chair, she was rigid and defensive, just like in the picture above - legs stretched outward, fists clenched, and arms up and at her sides.
Tomorrow she starts back at school, only for a half-day, but at least it will hopefully begin to get her back in a rhythm. I hope the last few days are just a blip on the radar and not a reversion back to where we were a few months ago. As I go back and reread Mira's blog entries, I am reminded that while we have had a few honeymoon periods on some meds/vitamin trials, the positive runs unfortunately, never seem to last. I want to remain hopeful with this pyridoxine trial and we will keep moving forward, but it's days like this, where what little remaining optimism I have that anything will consistently help with her seizures, tends to diminish even further.