I live in Western PA and just had my 10 yr old son's appointment. As I browse through this site it has occurred to me that we don't know as much about our son's DMD as some other do. I really like our Dr. he is really nice but we never learn anything new we go there to maintain him and that is it. I'm feeling really frustrated because I browse on here, read Quest and I feel he should be telling us so much more. I just want to be sure I am doing everything I can for my son, as you all know. So my question is why are so many going to see Dr. Wong and am I right to feel we should be getting more? This past visit the Dr. was with us for MAYBE 15 min!!

Thank you for the help,

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Dr. Wong and her team are very proactive in their approach as well as very thorough in all aspects of the disease. Our MD clinic here just diagnosed him, said let him do whatever he wants, and that was it. I had to take him to the cardiologist on my own with the MDA guidelines to get checked. Dr. Wong spends before and after time discussing his disease and has tests run in between such as the pulmonary function test, pt, nutritionist, ekg and echo, and so much more. We felt much more knowledgeable and knowing more what we were dealing with when we were done. I need to have you read my care pages so you can see what happened during our time with Dr. Wong. I will find and get to you shortly.
Where do you take your son? We live in south jersey and we go to AI DuPont in Delaware, I feel very comfortable with the Dr. we have. They seem to be knowledgeable. It is a full clinic, sometimes I feel like they could have something more to tell me too. I feel like we are there for such a little time when it takes us almost 2 hrs to get there. I want to do everything I can to help my son too. He will be turning 10 in March. They always tell me he is doing well but sometimes you feel like you need more. Well just wanted to let you know I feel the same as you. I also wonder if I should go see Dr.Wong?

Take Care,

We live in Illinois, outside of Chicago. We also take our son Tim, who is 10, to see Dr. Wong. We have tried other docs and clinics in Illinois, Wisconsin and St. Louis and even a consult appointment in New York. The difference with Dr. Wong and her team is the proactive approach to treating all of the effects of the disease. Others we have dealt with have taken the approach that DMD is a progressive fatal disease and there is nothing to be done. Dr. Wong and her team look at each symptom of the disease and treatment and treat what can be treated. Being proactive about cardiac and pulmonary problems for example and looking at growth hormones to counter the effects of steroids have all had very positive effects on my sons well being so far. There is a level of sacrifice and difficulty in care so far away but for us athe positives have outweighed the negatives. I still think it is important to have some local care either with a good pediatrician or a local neurologist that will work with Cinn. Also keeping informed as parents is probably the most valuable thing you can do.. Being a strong advocate for our children is such an important job. We do know them best.

Good luck with your decision.


Received your message. Possibly we can meet soon! We visited Dr. Wong last March and had a great expereince. We are going back this July for our second visit. In between,we visit the MDA clinic in Pittsburgh. Dr Wong spent at least one hour talking with us on our first visit. We also found out that Christian needs Vit D .from Dr. Wong.. Pgh did not run.test. Dr. Wong did. It's worth the drive!!!

Dear Tracy,
I cannot say enough good things about Dr.Wong. She is a very special person. When my boys were diagnosed we went to Boston Children's and I was very disappointed. I had already done a ton of research on my own when we went there so I was very surprised by how little the Dr. seemed to know. They really didn't help us at all. So I kept doing all kinds of things on my own hoping I was doing the right things with nutrition and pt and all that. So when we went to she Dr.Wong it was like someone had turned on a light in a dark room. She knew all about the reseach I had been reading about. When I talked to her about me being a manifesting carrier she knew exactly what I was talking about. The Dr. in Boston had never even heard of it. She agreed with me that starting steriod before they got weak was the way to go. She gave us all kinds of info on reseach, PT and supplements. They test and monitor them on everything that is effected. And then after reviewed all the tests and went over them with us. She will spend as much time as it takes to answer all your questions. Just being around her gives me hope. She has so much love for our boys. Plus all the other doctors we see there are just as great as she is. We learn something new every time we go out there. We drive all the way from NH and it is well worth the trip.
Here is the link to the hosp for your reference: http://www.cincinnatichildrens.org/svc/alpha/n/neuromuscular/defaul...
Thank you everyone!!!! This has helped me so very much! It is nice to know when you don't have all the answers you can come on here and get help! Again thank you all.

We live in Seattle, WA and we go to Dr. Wong. I was not happy with several of the neurologists here in Seattle. They weren't that experienced with DMD and they were pretty much like this is how it is - enjoy him now....But, Dr. Wong takes a holistic approach and constantly strives to improve her knowledge. She is accessible - more so than any other doctor I know. If I have something pressing, I can email her. Please note that I try and not take her precious time unless it is important. I was very worried about the distance factor and so far, this has worked out for our son. I have had several people recommend her - including a doctor who, he himself has MD. She is awesome - great with kids and parents alike. Her whole team of people treat our son with the greatest professionalism. You will like her - she is really worth it.
Char Burke

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