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Hi JoAnne,
As you know, we are in North Louisiana. As far as I am concerned there is not a good team within driving distance of us, so we go to Cincinnatti, OH and only OH for care. I have established locally a peditrician who is willing (and prefers) to work with Dr. Wong and let her guide anything serious and/or out of the norm and have a great local PT group who know about and continue to learn about DMD (they are even going to PPMD conference this year).
We currently go to Cincy about 2x per year and that is working great for us.
Our local pediatrician put it this way...she is our quarterback, but Dr. Wong and I throw in the plays....
Hope this helps!
Lori
I'm in the same boat. We are going to see Dr. Wong's team at Cincinatti Children's this May, but we saw the team at Texas Children's initially. My thought at this time is that we'll go to Dr. Wong once a year and Texas Children's the other times, but Max is only two so I don't know if that will work out. I'm very interested to hear other parents' responses!
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