Friday, July 31, 2009
As per our last visit with Elizabeth's Movement Disorder Neurologist dystonia is the the new diagnosis. She feels that Elizabeth is not Ataxic at all or low tone but her movement difficulties are due to dystonia. Despite us thinking she is really improving she feels that Elizabeth is significantly impacted by dystonia. As the Sinimet made her worse she wants to try Artane, this medication has to be gradually increased and results may not be seen until optimal dosage (in 3 months), she feels that Artane may help alleviate some of her symptoms and improve her speech. She also feels that in the future we should think about Deep Brain Stimulation as it has shown to have amazing results with dystonia. I have read about DBS in the past but did not think it was offered in Canada but it is completed at Sick Kids and her Dr. thinks Elizabeth would be a very good candidate. The earliest DPS can be done is around 7 years which is good as it gives us lots of time to contemplate whether brain surgery is appropriate as it is something we can't even begin to think about. The Dr. feels that we have to address her dystonia as she will encounter bony changes to her spine and legs if not addressed. We do see changes to her Rt. knee and it is causing a fair amount of pain so we are seeing the Orthopedic Surgeon soon. We ended the appointment with spinal x-rays which were a bit humorous as it requires Elizabeth to stand still which is impossible even with 2 adults holding her still. Once again she milked a toy from me from the hospital bookstore as she so so good that I could not say no.