We just got back and are about to go into another appointment but I figured I would share while I can. The appointment was very long and we had several major meltdowns. The doctor suspects a basil ganglia defect. He is scheduling OR time at the Cleveland Clinic main campus in order to do a lumbar puncture. They will have to put Gavin completely under and manage his air way so that’s a big deal. Still no med changes allowed for now. He said that “Gavin, for some reason, is predesposed to this type of movement disorder”. To make matters worse Gavin now knows he’s getting a lumbar puncture. So you can imagine the kind of fun we have been having……..We also learned that Gavin has “profound” mental health issues. Really, thanks I hadn’t picked up on that yet.
But honestly the doctor was awesome and very patient with Gavin….at least we have that….