Hi KIF1A Families,
Sloane received her forth ASO dose in October at 80mg. This dosing consisted of pre-dose bloodwork, research EEG, PT evaluation, and a cognitive evaluation. The biggest changes we have seen so far have been in her speech and cognitive awareness. She recently started counting to 10 on her own! We are noticing slightly lower tension in her legs and a stronger core. Not nearly as many collapses when she’s crawling around and better balance overall and improved fine motor control. Also her hand tremors have not come back. We are so excited with the change we are seeing. Please reach out with any questions!
With Hope,
Megan, Sloane, and Family