I spoke with the neurologist today. Bloodwork looks great. His rapmycin blood level is a 5.5, and he wants to get Alex up to 7. There are many different thoughts as to the effective dose for this med when it comes to treating TSC-related growths. He's read about a range of 5-10 being just fine, and also that 10-15 should be the ideal range. No one really has any clue right now, as this is all off-label, so Alex's neuro is taking the less aggressive route in hopes Alex has fewer negative side effects. We have the MRI's scheduled and will see what happens for a few months at 7. If that doesn't seem to be doing much, we'll up it to 10.
There's been a big change in Alex's constant moving. We saw that tonight again. There is more focus and less roaming. It was common for Alex to come visit and spend most of his time walking laps - out the door to the garage, out into the side yard, a few times around the perimeter of the yard, then back in through the sliding glass door. Lather, rinse, repeat. Sometimes he'd get distracted by the swing, so then that would be incorporated into his route. If this keeps up, I'm anticipating him gaining a bit of weight! He was pretty darn happy tonight. Lots of vocalizing and smiles. He did get a bit upset around 7pm or so...but that seems like a trend ever since it has started getting dark around 6:30. For whatever reason, he really doesn't like to be away from his bed after dark (me either, really!).
And such a surprise...Alex smiled for his school pictures!! I about fell over when I saw it! Too cute!
This was last year's picture. We got the eye contact, but he had to be held in place...and wasn't too happy about it all.
1 comment:
Wow, this is giving me a level of hope I haven't felt about him in YEARS. I know it's early and it's not a "cure-all" medication by any stretch of the imagination, but it's so wonderful to read about anything positive and good with him. Fingers cross for him and I cannot wait to see you guys and him!!
Post a Comment