We finally met with the Movement Disorder Specialist and she has sent us on another path in terms of a diagnosis for Elizabeth; dystonia. She feels Elizabeth is not Ataxic and that her movements and difficulty walking are due to dystonia. I am on the fence about the diagnosis, I do see some dystonic movements with certain activities and she seems to still have her startle reflex (when she is in a busy crowd walking is hard as she gets startled and falls), she can stiffen up when she is trying to do a difficult task and she frequently cries with leg cramps but I still see her as Ataxic. The Dr. suggests a trial of Levodopa/Carbidopa to see if her dystonia improves as there is a type of dystonia (dopa-responsive dsytonia) that is completely cured with this drug. The new medication will increase the dopamine levels in her brain and hopefully help with her movements, this medication is commonly used to treat Parkinson's. We are hopeful that this medication will at least help with her startling and making her walking more controlled if there is improvement it should be noticeable in the next week or two.
Here is a video of Elizabeth pre Levo-Dopa with Lisa one her favourite physoitherapsits. I would love to hear what other people think of her walking as I have never seen a child with Dystonia walk independanlty.