So we met with thev neurologist this morning from the Cleveland Clinic. Long story short he is very worried about Gavin’s loss of motor control. We were referred to a movement disorder specialist at the Cleveland Clinic that he works with. While we were there they took a ton of blood. Thy are testing him for everything he has never been tested for before. He is running a full genetic work up. Fragile X is one of the concerns he is testing for.
He wants a spinal tap done because he is concerned Gavin doesn’t have enough sprinal fluid. He is concerned because Gavin’s left tempral lobe shows reduced activity and no one knows why. The spinal tap is on hold until we meet with the movement doctor in January. The neurologist wants his opinion first.
We have been trying to persue Fragile X for a long time but the other issues always bumped it out of the way. Fragile X would explain quite a bit of why Gavin is the way he is. Once we know what the problem is we can address it. Until then we will continue to dangle in the wind. It just never quits. It never quits…….