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What Dr. Wong has done for me

I am starting this discussion for folks who are thinking of going to Dr. Wong and are wondering what they can do in Cincinnati that would be different from what their Dr. might do. I am starting this as a result of a discussion with a person on this site who would like to know more and why it would be any different. #1, there are only a few comprehensive care centers for DMD in the entire US. Cincinnat is one of them,therefore, the reason for so many differences. I explained that Dr. Wong did tests (that Kelvin's first MDA clinic didn't do) that found Kelvin to have low bone density (so we started a lot more D3 and Calcium), she typically starts kids immediately on night bracing (even the person that made Kelvin's said that he has worked with these for over 30 years around the world and has seen first hand the benefits and that not enough doctors prescribe them early enough), Kelvin also wears a hand brace every night (strange, but his legs aren't tight, but 1 hand is a bit- this isn't the "norm"). Dr. Wong tests everything to create a baseline and then watches our boys like a fine toothed comb so that any change seen can be hit with whatever is out there in order to keep our boys healthy, for as long as possible. Also, for those who never saw it, there is the New York Times article featuring Dr. Wong and the boy that she helped to walk again. Thought others might like to comment, for others who may be thinking of going to see Dr. Wong. I hope this is ok to post on here, if not, it can be removed and I'm sorry if I did wrong. There is no question for those of us who go to Dr. Wong, but, for those thinking of going, I think it would be nice to have actual items that she has helped with, that another Dr. may not have tested for. This by no means is promoting Dr. Wong or Cincinnati Children's. It is just a means to help others decide what is best for their sons, which may be the doctor that they already have. Michelle

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Permalink Reply by Marisol on May 19, 2010 at 1:40am

My son is 9 and we have been to clinic in Northern Cali. (UC Davis) I had heard many things about CCH and Dr. Wong. I have been thinking about going and this is the first time I have read this discussion. I want to thank all of you for what you have written here. I am definitely going to make it a priority. Number one for me was getting my head around the initial diagnosis, then of course downloading my human size brain with a wealth of info. and taking the steps to ensure the treatment of my son....now I see this as the next step for us.
-Peace and Love

Permalink Reply by Penny Hauer on June 18, 2010 at 3:51pm

we are in Ca now from Ohio we want to go to any Dr who understands duchennes Ca clinic is not it but we are on Medical could there be anyway they would let us go. who would I go to Penny

Permalink Reply by Suzanne Desmond on August 16, 2010 at 11:05am

All I can say is that Dr. Brenda Wong is an Angel to all in the DMD/BMD family. Where would we be without her. I just wish there were more doctors like her that deal in DMD/BMD. Francis has a neurologist here in Buffalo & she is nothing like Dr. Wong they & the clinics are like night & day, but I go to see her because I wanted someone locally as well in case the unexpected happens. I wish there was a standard of care in all the clinics across the country, then people would not have to spend there hard earned money to travel far away from home to get better medical treatment for DMD/BMD. As long as I can take Francis to Dr. Wong I will go there.

Permalink Reply by Lisa Crawford on March 28, 2011 at 6:40pm

I am so glad you posted this info about Dr. Wong & CCHMC. I have recently made several new friends on FB, all who are parents of children with DMD...so I have heard of Dr. Wong through them. My son Brendon is soon to be 8 yrs. old & was diagnosed at age 3. Since then I have been concerned that he has not received the best possible care & this has been driving me crazy! I live in Indiana & I am not at all impressed with the MDA here. I have been to MDA 3 times & was very unsatisfied, so I have been going to the Shriners Hospital in Chicago. I can not say anything bad about them, because when MDA didn't show a pro-active approach I went to the Shriners & they have helped...but as a parent with a son who has DMD I feel that there is something missing with his care. I know there has got to be more & better! I have been saying to myself for the past 5 yrs since his diagnosis, that I feel like I'm not doing enough! That has been really hard for me, but I think it's because I have not seen the right doctors, I wish I had heard of Dr. Wong a long time ago. I am learning new things everyday about DMD, thanks to all the parents who are living with DMD also. For example..night splints, no Dr. has ever told me about this. So in Jan. 2011 I contacted my local MDA went to the Dr. & told him that I wanted to have night splints made for my son & also told him how I had heard other parents talking about the importance of this, he just looked at me & told me that he doesn't go by what other people say. So, needless to say my son didn't get night splints. The Dr. told me that my son was fine & that I am doing everything right. Well guess what I'm not because I'm dealing with Dr's like that. I am so upset with myself for not being a little more proactive. I now know what I need to do & I will be making that call to CCHMC & hopefully my son will be Dr. Wong's new patient. It is because of you, the parents that I have learned so much. I don't know what I would do without you! Sincerely, Lisa

Permalink Reply by Kelvinsmom - Michelle on March 28, 2011 at 8:24pm

Dr. Wong and her staff (including other doctors working with her) are as proactive as they can be. Every little thing can be monitored and most of us feel that any help is better than none. For example, night braces, the guy who made ours has been doing so for 30 years and said they certainly help, but not enough doctors suggest them. I wish you the best of luck.

Permalink Reply by Rachel Sedacca-Replogle on September 3, 2014 at 12:35am