Bradley had a cardiology visit this week but I'm not sure what to do about starting lisinopril. The cardiologist does not advocate starting it before heart changes appear. He said he was disappointed in our neuromuscular doctors for giving credibility to one study showing lisinopril can help prevent cardiomyopathy. It may be he didn't like another doctor making recommendations in his field of expertise. He also is adament that it is very unusual for heart changes to appear in a child with DMD before the teen years. So far all of Bradley's EKG's and Echocardiograms have been normal but I Kknow these tests do not pick up early changes and a Cardiac MRI would be more reliable.
When Bradley goes to Cincinatti Children's Hospital, they will be doing an MRI of the heart. It is my hope that no heart changes will be evident but I am interested in what they will find. I may wait until that time when we see the whole team of doctors to make a decision on the lisinopril. The entire staff gets together after all tests and evaluations to discuss Bradley and then they make recommendations for his care.
Once we go through this whole thing, I am wondering how his present doctors will respond. I wonder if they will be willing to work with the Cincinatti team alternating visits every 6 months. It is not set in stone that we will continue to follow up with Cincinatti but somehow I doubt that is the case given what I have heard about their excellent care of DMD. But we may find we are getting excellent care already. What I really hope is that Bradley's current doctors will continue his care working along with the Cincinatti team.
I like the idea of a team approach. Neuromuscular doctor and Cardiologist working together on the same page.....as well as Pulmonologist, Physical Therapists, Nutritionalist, etc... I think this type of care is possible in all Children's Hospitals and this is really what the DMD community is pushing for....universal standards of care. I believe Cincinatti may be the model of choice for other MDA clinics and Children's Hospitals.