My son, 3 was diagnosed in November. We went to an MD clinic and I felt like the doctor knew less about Duchenne than I did. Is this typical? I have heard of Dr. Wong being mentioned as a great specialist. Are there others? Any help would be appreciated.

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We see Dr Wong, but there are a few others. Kevin Flannigan is in Utah, and Brian Tseng has just started a new clinic in Boston this year. Both are ones I'd definitely go see if we weren't already with Wong. I've also heard good things about CHOP (Philadelphia) and Children's in DC.
We are taking Jared to see Dr. Wong in November and we are from Southern California. I have been listening to a lot of parents out here and the consensus is the best specialist is Dr. Wong. I do a lot of fundraising with MDA and so through developing those close relationships with them am learning more and more there too. I was able to talk to a neurologist at an MDA event last week and told him that MD parents are all talking about seeing Dr. Wong and I think he was quite shocked. He wants to know why. The conclusion so far is that there needs to be integrative clinics all across the nation that have the same standard of care. I know that will be discussed at a Neurologist Conference that is sponsored by MDA. I plan to attend if I can so I can perhaps get some changes happening. But I have heard Dr. Wong is a very caring Dr. and this is her life's work-her clinic works with MD kids only it sounds like. Together we can make change as parents to our MD kids, we just have to get out there and do it. I hope this helps you.
Dr. Susan Apkon and the Denver clinic are on their way to being one of the top in the country. They met with members of Dr. Wong's team & Pat Furlong last month to compare notes, etc. They are working with different groups to fund all staff that is needed to offer comprehensive care. Keep and eye on them, it won't be long until you are hearing a lot about Denver. We have been there for 5 years and have seen amazing improvements in the clinic!

Ang :)
We are happy with the doctors and clinic in St. Louis. Where are you ?
Here's the thing. There are 224 mda clinics in the usa. Most of these clinics see people with neuromuscular diseases and some of these physicians are interested in and expert in a specific condition or are 'generalists' in terms of MD. When you son is diagnosed with Duchenne, you want to your physician to be an expert. It is also wonderful when you find an inter-disciplinary approach. This means, in addition to the expert, it is essential to have other subspecialists involved and a team approach to care. This means, your son is evaluated as an individual in the context of the diagnosis. This means individualized care, thinking through his needs, thinking ahead about next steps, what could and should be done to preserve and protect muscle and muscle function and insure the best quality of life right now and into the future. This also means thinking about the family, about school and about next steps.
Because this approach is optimal, it does not exist in all of the existing clinics, rather only a small number have the expertise, capacity and interest to organize this type of approach to care. Depending on where you live, here is a short list:
Children's Hospital of Philadelphia - Richard Finkel, MD
Cincinnati Children's Hospital - Brenda Wong, MD
Denver Children's Hospital - Sue Apkon, MD
Ohio State University/Columbus Children's Hospital - John Kissel, MD and Jerry Mendell, MD
Vanderbilt - Larry Markham, MD (cardiologist) and Bryan Burnette, MD (you may remember
Larry from Children's in Cincinnati- he is wonderful and Bryan trained in Cincinnati as well)
Mass General Hospital - Brian Tseng, MD
University of Utah - Kevin Flanigan, MD
University of Iowa - Kathy Matthews, MD
Children's National Hospital (Washington, DC) - Robert Leschner, MD

All of these have significant expertise in DMD, have an inter-disciplinary approach and LISTEN. The thing is, you need someone to wrap their arms around you/your son/your family and act as a wall to lean on.

From 50 foot away, Duchenne looks the same, but up close each boy is different, with different needs and his own dreams. It is up to all of us to insure all boys diagnosed with Duchenne are able to reach those dreams.
Warm regards,
Pat Furlong

My son was diagnosed on December 30th.  We met with Anne Connolly at St Louis Children's last month along with a PT and orthotist.  I left feeling like Dr. Connolly is a caring, kind lady but I also didn't know much more than I did before (from late-night obsessive researching).  Does anyone out there see Dr. Anne?  She seems wonderful but I also need folks who will guide me instead of me being the one to figure out the right questions to ask.  Thoughts?


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