Recommendation on specialists across the country?
We live in the center of Nebraska. We have recently heard that the Children's Hospital of Cincinnati, OH is very proactive in their treatment of DMD. We haven't been overly impressed with the specialists that we've seen so far. Any thoughts on Cincinnati or other recomendations that we should look into?
Replies to This Discussion
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Permalink Reply by christine good on
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We live in Oregon and take our son there every year. Very impressed, highly recommend. If you are interested, call natl patient travel center when you have your appt and they will help you with free or reduced airfare.
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Permalink Reply by Keith Van Houten on
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We travel to Cincinnati from Michigan - and will do so as long as we're able.
Not sure what side of the state you're on - there's a FACES group in Colorado / Wyoming, try contacting the coordinator. Someone in the group can probably tell you about specific doctors in that area.
http://www.parentprojectmd.org/site/PageServer?pagename=Uniting_FACES
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Permalink Reply by Jennifer Shumsky on
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We are very happy with the care we receive with Dr. John Day at Gillette Children's Hospital in St. Paul MN, they have the pediatric portion of the Twin Cities MDA clinic if you are looking to stay a bit closer to Nebraska. He also has a clinic at the University of MN.
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Permalink Reply by Rosalie on
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We travel to Cinci every six months and are very impressed with the care and the specialists
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Permalink Reply by cheryl cliff on
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Have you heard about the work being done at Nationwide Children's Hosp in Columbus, Ohio? We take our son 2x's yearly from California and have found Dr Flanigan & Dr Mendell to be excellent. They have a great cardio guy who has been working with DMD for quite some time too. Everything, all appts, are there at Nationwide PLUS they go the extra mile and assist with booking a hotel, sometimes free to us or with a discount rate. Currently, there are clinical trials (the only ones underway in the US) with Flanigan/Mendell so we feel confident that should something come available for our son, we will find out straight away.
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Permalink Reply by Tamara Walters on
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Don't know where you live in Nebraska, but the St. Louis is wonderful and is a Research Center for the MDA. Cincy is good too, but St. Louis may be closer to you.
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Permalink Reply by Donna on
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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.
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Permalink Reply by Tina Klingaman on
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We travel from Michigan to Columbus, Ohio twice a year to see Dr. Flannigan & Dr. Mendell. We have gone there for almost 9 years and will continue to make the trips because the whole staff is great and very helpful. My son has been involved in several studies to help them learn more about DMD - They seem to be on top of the research so that's where we want to be. We have also gotten free or reduced hotel rooms due to the distance we travel.
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Permalink Reply by Betty Vertin on
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Thank you so much for all of your help. My son was diagnosed 4 months ago and at first it didn't even register to me that we could find the doctor and/or clinic that we felt most comfortable with and it is a little scary trying the choice the right one. I have been researching all the clinics that you have all told me about and I feel much better about finding a clinic out of state. I have talked with staff in Cincinatti and they seemed really great.
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Permalink Reply by Glenn Eisenring on
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We have also heard very good things about Cincinnati, but we have yet to go there. We do take our son to Childrens Hospital of Philadelphia (CHOP) to see Dr. Finkle. So far we have been very happy with the doctors, the hospital, and the doctors support staff there. Bottom line is that you need to go where both your son and you are most comfortable with the doctors and the staff. I actually interviewed my sons doctor on the phone before we switched.
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