I have a family I have just started working with, new diagnosis of DMD and they were not happy with MD clinic visit locally. Does any one have an MD neurologist they are really happy with and can recommend. They are willing to travel for the clinic visits. Any suggestions are welcome.

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Where are they located? Many people, including us, take our sons to see Dr. Wong at Cincinnati Children's Hospital Medical Center. They have a fantastic neuromuscular care center. There are also good ones in Columbus, OH (Nationwide) and Boston. I know there are a few others, but I'm blanking at the moment. I'm sure others will chime in.
The family is in TN and visited a local MC clinic here and was not happy with the doctor. Thank you I will relay the message. They have read a lot about Dr. Wong and wanted a verbal referral from a parent.

Laurie Paschal said:
Where are they located? Many people, including us, take our sons to see Dr. Wong at Cincinnati Children's Hospital Medical Center. They have a fantastic neuromuscular care center. There are also good ones in Columbus, OH (Nationwide) and Boston. I know there are a few others, but I'm blanking at the moment. I'm sure others will chime in.
Glad to help. There is a fantastic cardiologist at Vanderbilt Children's. His name is Larry Markham. He use to be in Cincinnati and we loved him.

Jennifer R. Jones, PT, DPT said:
The family is in TN and visited a local MC clinic here and was not happy with the doctor. Thank you I will relay the message. They have read a lot about Dr. Wong and wanted a verbal referral from a parent.

Laurie Paschal said:
Where are they located? Many people, including us, take our sons to see Dr. Wong at Cincinnati Children's Hospital Medical Center. They have a fantastic neuromuscular care center. There are also good ones in Columbus, OH (Nationwide) and Boston. I know there are a few others, but I'm blanking at the moment. I'm sure others will chime in.
The other excellent place for DMD guys is Nationwide Children's in Columbus, Ohio. Dr Kevin Flanigan is working with Dr Jerry Mendell to provide top notch comprehensive care. We travel there all the way from California twice yearly. The cardio (can't remember his name just now) is also very experienced in DMD and just an elevator ride away from the neuro clinic. We took our son to Nationwide for the first time a couple of months ago, previously we saw Flanigan at Univ of Utah before he moved. We were surprised and happy to see how well the entire staff there treated patients, they did a fantastic job at making everyone comfortable. I hear the same from parents involved with their DMD clinical trials, excellent care and tremendous kindness.
I spoke with the family today at therapy and told them of these choices, they are curious about how it works travelling to see MD's with your insurance, do you have a local neurologist, ortho and cardio or do you just see the docs at clinic 2 x year. this family is very new to the diagnosis( 2 months ) and is trying to learn the system early on.
Every case will be different..This family will need to check with their insurance to make sure they are covered out of state.. Some HMO"S and other insurances only cover local or "approved" doctors...I am fortunate enough to be able to use whomever I want...We live in Florida and just took our son to Dr. Wong in Cinci this year for the first time. I wish I had done it sooner. I thought Lucas was in good hands with his doctor in Florida untill I saw the set up at Cinci {while I don't have personal experience with Nationwide in Columbus, from what I understand the set up and care are simular}. Lucas will now go every 6 months for check ups..We saw the neurologist{Dr. Wong} then she sent us to the cardioligist. They did a MRI of my son's heart and will do this yearly..then we saw the pulmonoligist, a nutritionist, a geneticist, physical therapist, and possibly someone else who has slipped my mind. As you can see, you get TOTAL care. The best advice I can give is the sooner they can start with such a set up. the better off their son will be!!!



Jennifer R. Jones, PT, DPT said:
I spoke with the family today at therapy and told them of these choices, they are curious about how it works travelling to see MD's with your insurance, do you have a local neurologist, ortho and cardio or do you just see the docs at clinic 2 x year. this family is very new to the diagnosis( 2 months ) and is trying to learn the system early on.
Thank you all so much, I am trying to get mom on here to ask questions and seek support. This site is awesome. Thank you mom.
Depending on where they are in TN - St. Louis is not too far, (5 hour drive from Memphis) and I've heard that Anne Connolly is excellent. She's head of the MDA clinic as well as the CINRG (research group with clinical trials) in STL.
We were going to only travel to see Dr Flanigan once per yr and stay local for the other (less intense) appointment. But, the Cardio at Nationwide Childrens was expert and we really prefer seeing Flanigan so we will go twice. Our ins pays their portion then MDA (they must register in advance) pays the rest for the medical fees and testing. Nationwide has a relationship with local hotels therefore they put us up at no charge...so far anyway. Our only expense was flying, meals (breakfast was included with hotel) and a rental car to get around. We feel making the trek to Columbus is worth the hassle since we know they take superb care of our son. There are quite a few MDA neurologists around the country, some good, some not so good. Good or not so good doesn't cut it with a disease like duchenne. Our guys deserve excellent, comprehensive care for the rest of their lives, to prolong their lives. All parents do what they can do best to fit their situations, and each is different.

Jennifer R. Jones, PT, DPT said:
I spoke with the family today at therapy and told them of these choices, they are curious about how it works travelling to see MD's with your insurance, do you have a local neurologist, ortho and cardio or do you just see the docs at clinic 2 x year. this family is very new to the diagnosis( 2 months ) and is trying to learn the system early on.
Cheryl,
The cardio may be Dr. Allen. Very nice man.
Yes, the cardiologist is Dr. Allen. We have been traveling to Columbus 2-3 times per year for the past 9 years and we will continue to go there because of the care our son gets.

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