My son Markie is 18 months old with DMD, we've known officially for 3 months. In some way I think I've known since he was 3-6 weeks old. Just had a feeling something was different. So my questions are... What should I ask his doctors? Is there any advice you have as parents? Are there any Doctors that are highly recommended? I would travel anywhere. Looking or any advice I can get. Thank you!

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Hi Jessica,
My name is Betty. I have 3 sons with DMD. My oldest was diagnosed at age 4, my second son was 2, and I was pregnant with my youngest and I knew right away he had DMD too. We taake all of our boys to Cincinatti Children's Hospital to see Dr. Wong's team. In my opinion they are the best. At 18 months they would probably recommend clinic visits once a year. In addition, they will recommend a healthy diet and supplements. In addition to that we do home stretching with all of our boys, including our youngest who just turned 2. We also have a physical therapist come to our house 2 times a month to monitor his development and range of motion. He will start corticosteroids and night splints when he is closer to 3. Please feel free to call or message me with any other questions. It is a little different with my youngest son because we knew at such an earlier age so I can identify with where you ate with your 18 month old son. I'll try to find you on Facebook too.

My son James was diagnosed at age 3 and started steroids and night splints just before his fourth birthday.  We are religious about stretches.  He was doing PT, but the therapist doesn't think he needs it just yet.  He also takes calcium and vitamin D supplaments.

We see Dr. Crawford at Johns Hopkins but have also seen Dr. Mandel at Nationwide Childrens Hospital in Columbus.  Hopkins is much closer for us and I really like Dr. Crawford's "quality of life" attitude.  Columbus is great as well, and it's where much of the really promising research is happening.  James participated in one of their (non-intrusive) studies.

 

Hi Jessica,

How are you!  It's nice to cyber meet you!  We found out that Wyatt had DMD when he was also very young (10months).  It's so hard to look at your sweet little baby and think, "oh man, we are in for quite the fight!"  But that fight is worth every single moment.  When they do things (walk, jump, etc.) that some tell you they will never accomplish it means everything.

 

We live in Seattle and started taking Wyatt to see Dr. Wong when he was 15 months old.  And I don't regret it for a second.  We (up until this year) have traveled to see her every 6 to 9 months depending on the tests that need to be done. 

 

There are so many questions I'm sure that you have, however you can't possibly think of everything.  The best part about Dr. Wong is you don't have to know what to ask, she leaves no stone unturned.  We have 5 sons and Wyatt is our only 1 with DMD, he's only 5, so we are pretty new to this too.  I didn't have any family member with DMD, frankly I didn't even know what it was.  So meeting people on this site was my first step to understanding his disease. 

 

The very first thing that you will want to know, if you don't already, is what his mutation is.  The DMD research world is in full swing, so knowing his mutation will help you in the next few years, if you are interested in trials, and also when medications become available to treat specific mutations you'll know what medications will work for your son. 

 

The rest of the stuff, EKG, Echo's, lung tests, blood draws, stretches, night splints, etc, Dr. Wong will know.  No matter where you seek care, the best thing I can say is ask a lot of questions?  Ask what the newest and the greatest treatments are.  The more information you have the better you can fight for Markie. 

 

Wyatt started steroids when he was 3 1/2 and got his first pair of night splints on his 2nd birthday.  There is a huge debate about steroids (when kids should start, etc.) , but there is no doubt to most people that they are benefical. 

 

I know there is so much, it's super overwhelming.  This site became my friend in the middle of a lot of pain and dispair.  I truly hope you find as much love and support as I have here.  I wish you the best of luck and if you need anything, send me a message.  Shortly after Wyatt's diagnosis I met the most amazing mom on this site.  She has talked me through some really tough times, if I could pay that forward I would love to, anything you need just ask.

 

We will be in Cincinnati in August.  I'm assuming if you decide to see Dr. Wong, you could probably get in before then, but if the timing works out, I would love to meet you in person.

 

God Bless and best of luck.

Melissa

Thank you so much for the comments and advice!  Yes, this is really overwhelming.  So far I think we've done pretty well, Markie was in PT and OT before we were even diagnosed and has been in ST for a month now.  We've been to one Clinic day in Atlanta and have another appointment on the 18th of Feb.  I'm planning on asking about night splints to maybe get him used to sleeping in them.  So far when I've asked about stretches the only answer I've received is that he doesn't need them yet.  I disagree and will keep on that.  He squats to play a ton and that helps out.  We've already put in a referral to go see Dr. Wong, I'm so excited about that as she seems to be the guru :)  He's had an EKG, Echo and blood draws but no lung test yet.  We also know that he's missing exons 30-50, and we've just learned that exon skipping just might work for him.  As overwhelming and devastating as this all is I find great comfort in all of the moms and families that I've met both in person and online.  This is a wonderful community.  We met some really amazing people in DC these past few days.  Boy was that an experience, I'm exhausted and Markie is on his second nap of the day and it's only 3:30!

I think there is a video on this site on how to do the stretches. You could also email pt at cincinnati childrens and they would probably email you a copy of the stretches. I'm glad to hear that exon skipping will work for him. Wyatt is eligible for it as well, we just need to get it approved. Lung test usually start around 7, 8 or so years old. (Or so I've been told). Glad to have met you! Take care.
I found the video under caring for him section on ppmd site. It's a pdf file that you can download

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