We are trying to make a decision on switchng from LPCH to another MDA clinic or DMD clinic, we live in California...any suggestions, where do you take your son and reason for choosing? We are considering cincinatti or UC Davis....
We take our son to Dr. Matthews at the University of Iowa Children's Hospital in Iowa City, IA. Large airport in Cedar Rapids, IA (which is right next to Iowa City). We have been VERY happy with Dr. Matthews - DMD is one of her main focuses and the University of Iowa was one of the sites on the Ataluren study. The nurses in the neuromuscular pediatric department are angels.
We go to Cincinnati and we've been very happy with the care there. Chose it based on reputation and distance from home. Definitely recommend choosing a place with a multidisciplinary clinic. You want all the specialists you see to have some familiarity with MD, if you can.
We live in Oregon and travel to Cincinatti. So glad we do. Cost can be offset by Natl patient travel center. Our DMD clinics on the west coast did not have up to date info and very poor knowledge. I reocmmend CCHC to all parents.