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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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!
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
We also see Dr. Wong twice a year and then see our pediatrician here for anything else. She actually is a satellite group for Texas Children's, but just told me this week how impressed she is with Dr. Wong and her team. Sam is currently 7 and we plan on keep his care this way for as long as we can/have to.

Laurie

Lori Ware said:
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
We live in Oregon and were not satisfied with the passive care given by our local MD's. We also fly to Cincinatti 1x per yr. and have a local ped. that works with Dr. Wong. I don't think you can get any farther away than Oregon.
I agree wtih Lori in Lousiana. We live in Northern CA and are not happy with DMD care here. We have a wonderful peditrician who is in contact with Dr. Wong. We follow the same care plan as Lori and for now it works great for us. We only go to Cincinnati once a year.

Good Luck.
We have a local pediatrician for all of the "normal" stuff but he also gets all reports from Univ of Iowa Children's Neuromuscular Pediatrician when we see her 2x per year. (U of Iowa is less than 2 hours away, so very manageable) We also monitor PT more routinely through a local PT but Kyle does see a PT when we go to U of I. Dr. Matthews is great at Iowa City. Our main nurse at Iowa City is a HUGE help when questions come up. I carry a card that if Kyle ever gets injured that we make sure any breaks are handled properly to get him back on his feet (if leg related); regarding his steriods, etc. I've been very happy with Kyle's care.
Hello Joanne and all,

My sons go to clinics in Portland, Me (Home), Shriner's Hospital in Springfield, MA (Orthopedic care) and until recently we were going to Cincinnati Children's. We started going to Kennedy Krieger in Baltimore where Dr. Kathryn Wagner is developing a transitional program. And yes, that is a lot for all of us to do.

So, here's why. In Maine we have similar experiences as many families with their local clinics. The doctors here are less aggressive, see fewer patients so they don't develop the interest and experience in DMD and we need to see specialists in multiple separate visits. My wife and I want our sons to see doctors who take the extra time, provide more information and work with us to ensure we are all doing as much as possible for the health of our sons. We still need local doctors who are familiar with our sons. Traveling becomes more difficult as our sons get older. Both of my sons use power wheelchairs, yet we take manual chairs when traveling, besides our need to carry luggage and Bi-Pap. With transfers, shuttles and walking it can be very tiring. Most important is we engage our local doctors in discussions about the care our sons receive outside our state. All clinic notes are circulated to every doctor they see for them to learn what other clinics are doing with the expectation this will in some small way become part of their routine. While we are able to travel for care many more families are not and I want them to also benefit from our experiences. The last thing to think about is that if our sons have an emergency we need local doctors who are familiar with them and their care to handle the situation (Maybe with support from another clinic.). I can't see trying to transport a child in respiratory distress or other medical complication for hours to a clinic hundreds of miles away.

If I had the resources and time to develop a clinic locally that would be ideal. I don't know what reception we would receive, so we continue talking, passing around information and working to change attitudes and practices. For the most part our local doctors understand our rationale for seeing physicians in other areas and have been receptive to learning more. Sometimes they don't have the resources to include similar programs, yet they are all able to coordinate specialists and learn more about current best practices for DMD. I see that as our job to help.

Brian Denger
Hi Joanne -
Hi Joanne -

I'm not sure if this will help you, but we have been very pleased with Dr. Brian Tseng at Mass General (http://www2.massgeneral.org/neurology/tsenglab/staff.html) - His clinic provides 'one stop shopping,' with an orthotist, a PT, a social worker and Dr. Tseng.

I absolutely agree with you that a good Dr. makes all the difference. I always think about the Dr. who diagnosed our son. He gave us the ridiculous and potentially damaging advice that we really didn't need to do anything for 4-5 years until our son started showing symptoms. Needless to say, we were very happy to find Dr. Tseng!
I know of alot of Americans that come here to Canada to see my sons doctor at Bloorview in Toronto. Dr. Bigard is his name and he is one of the top Doctors for neuromuscular disorders you should look up the website for bloorview hospital in Toronto and have a look.
Thank you all so much for your input on this. I think we all would climb any mountian or go to a foreign country if we knew there was a good doctor there to help our boys. I am totally willing to go where ever I need to go to get Landon the best care. In saying that, I do not mean to insult our doctors here; however, I do want a more aggressive team working with my son! I was just worried that I needed someone close to home in case of emergencies and felt that I could use my pediatician for all other things and if there ever was a "true" emergency, we could always use the local in state hospital for something like that. I do think I am going to use the team in Ohio as his primary team and go from there. I am going to look at these other doctors a few of you have told me about. Thank you all again...it is nice having parents like you all to talk to. I am still so new to this and still learning and value your opinons so sincerely!
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!

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