PPMD Community

Opinions of which team of doctors to use???

I was curious to get some opinions from some DMD families who may have at one point went through some issues that I am currently having about which team of doctors to use. I live in Arkansas and use a team here at the Children's hospital but have not been real satisfied due to them not being real up-to-date on the current research and such. I also take Landon to Ohio to Nationwide to see Dr Mendell's team. I really feel I want that team to be his primary team of doctors but was not sure if it was a good idea to have his "primary" doctor that far from home or if I should just continue to use both. My concern with using both is the ones here are very "safe" and passive whereas the team there is more aggressive (which is what I want). Also I hate for Landon to be going to this doctor, then that doctor, etc. I was wondering if any of you use doctors that far away as your main or only team for your sons? I guess I am just trying to get some opinions and ideas in case there is anything I have not thought about when it comes to this????

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Permalink Reply by Ofelia Marin on April 5, 2010 at 10:35pm

Just wanted to add here that Dr. Kevin Flanigan joined Dr. Mendell's group and is now seeing patients in Columbus. I think you are on the best hands here in the US.

It's no problem to have them keep contact with your local team.

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Permalink Reply by Sara Savalli on April 8, 2010 at 2:09pm

ok we go to dr wong but we have tried here 3 different md clinics, i think something needs to change the standard of care they just all seem to oldschool for their standard for me, not proactive enough and recommend things that dr. wong said not to do, they told me to get my son a power chair when he is still mobile for long distances i told them i do not have the means to transport that i have no way of being able to get a new vehicle at all expecially one for that, then she said well i would get a stroller from like walmart or something, really he is 8 he does not want a stroller. i wonder if there is something to do to raise the expectations of these "specialists" so definatly recommend dr. wong,

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Permalink Reply by Cathy Johnson on June 29, 2010 at 4:39pm

We are seeing Dr. Crawford at the MDA clinic at Johns Hopkins, but have also seen Dr. Mendell's team because of the powerful research they are doing. We've been pleased with both places. We've see doctor Crawford every 4 months, and have see the team in Columbus once. We have a neurologist at Walter Reed who, because he is not an expert in DMD, referred us on to both places. We keep him in the loop.

Tina Klingaman said:

JoAnne,

We currently see Dr. Mendell 2-3 times a year. In fact, we leave tomorrow for a visit Wednesday! We also see a local doctor once per year (at a MDA clinic) and Derek has a primary care doctor for his yearly physical, blood work and anything else that may come up. Both the doctor at the local MDA clinic as well as his primary doctor know that we make the trip to see Dr. Mendell and they don't seem to have a problem with it.

Tina

Veronica E. said:
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!