Dear Retta. Thank you so much for your prayers. She is doing very well. She's eating finger foods by herself, helping with dressing, holding her head up better, talking more, playing independently,using a pencil, sitting up alone for a few minutes....She could do almost nothing before, so at this point it has been life changing, no matter what the final outcome ends up being. We have increased the Sinemet extremely slowly; we are now up to 15/60 mg total daily dose. If we increase faster she gets jerky/twitchy. We are interested in the sequencing, but we think it is cost prohibitive for us right now. For now we are doing the dystonia comprehensive sequencing panel, which is a little more doable for us.
Thank you again for your prayers and interest, Elizabeth