I know that care differs at the various clinics in the state. We live in the Milwaukee Metro area but go out to Madison for our son's care. I'm curious to find out what people think about the care and the options they have available in their areas.
We live in wi.rapids and have taken our son to Marshfield,wi and rechester,mn.@ mayo clinic I am currentley waiting for an appt @ cincinatti childrens hospital. I guess I didn't feel we were getting enough info or help locally. i hope things are going smoothly for you family. keep in touch.
We like Madison's approach vs. the Milwaukee clinic. At Madison the appointment is an all day appointment with specialists coming in an out of the room all day. Lucas gets pulmonology, cardiology, PT, OT, and orthopedics at the visit. If we need to see any other specialists, we request them before the appointment and we are set when we get there. It makes it a bit easier to manage his care and keep things organized. We don't see a neurologist in Madison, but we probably could if we wanted to. I'm not sure of the purpose of a neurologist going forward.
We live in Mukwonago, about 25 mi SW of Milwaukee. Nick was diagnosed in MIlwaukee and saw the neurologist there until we switched to Dr. Wong in 2006. What I found troubling was that after the initial diagnosis, learning the stretches, getting steroids at 4, etc., it was all kinda 'wait and see' because he was still ambulatory. Nothing proactive. And Dr. Jacobson always seemed a little distracted.
One note about Madison--at the 2007 conference I went up to Dr. Finder to just praise his candor and passion for the pulmonological (is that a word?) care of his patients, and he said since I live in Wisconsin, Nick should go to the best pulmonologist ever (better than he himself, he says) in Madison. Her name is Mary something, I think.
We live about 20 miles north of La Crosse, WI and started out going to Gundersen Lutheran Clinic but DMD was something they did see very often and seemed to think our son was okay to put on display for other doctors and interns. I was furious when they paraded them in and told them that he had "grossly enlarged calves and his lifespan would be OVER before his 20's." We now go to Mayo Clinic in Rochester, MN and it is also a MDA clinic so we have been very happy there. He sees Dr. Kuntz, pediatric neurologist and Dr. Lteif, endocronologist. Our son is in a five year study there for quality of life of boys with MD which is going quite well too.