We live in Manning, SC. We are about half way between Columbia and Charleston. Our grandson goes to various doctors in Columbia, Sumter and Charleston. Once every 8 - 12 months we go to Dr. Wong at Cincinnati Children's Hospital in Cincinnati, Ohio. Dr. Wong and the staff at Children's have been very helpful with our grandson's medical care but the trip is becoming very difficult. Combine this with the local doctor visits and there seems to be some overlap and probably a lack of coordination or communication as to treatment. I would like to find a hospital or clinic in the southeast that offers care which is similar to Children's Hospital.
I agree that the care in Cincinnati is wonderful, but it is burdensome to travel, especially as people get older. also, there are other places around the country who are either providing wonderful care or would like to improve the care they are providing. It looks like your grandson is mostlikely seen at the neuromuscular clinic in Charleston (with Mary Noreen) and, from the MDA site, like she has limited resources there. One suggestion would be to travel to a site with more resources closer to you than Cincinnati (i would suggest Duke), but another option would be to work with your grandson's neuromuscular provider to begin to identify appropriate providers in your area, both for your grandson and for others living in your area with Duchenne. I would take a copy of the Imperatives for DUCHENNE MD to her (http://www.parentprojectmd.org/site/DocServer/provider-flyer14.pdf?...). Ask her if she has identified providers in the Charleston area in the required subspecialties. If she has not, ask her if there is anything that you can do to help to engage these providers. As your grandson gets a little older, the most important providers will be cardiology (someone with expertise in heart failure), pulmonary (someone with expertise with non-invasive ventilation, issues with oxygen and Duchenne), physical medicine and rehabilitation (assistive devices, local resources, wheelchair assistance, etc) and/or palliative care (for all issues dealing with transitioning through all stages of this disease and any necessary pain management). Gastroenterology (GI) is emerging as an area of need for older guys as well. If you can help Mary put together a team, both for younger and older people living with Duchenne, it will help both your grandson and others.