We are Americans on an expat assignment in Singapore.  My son is 4years was recently diagnosed with DMD (back in October 2012 in Singapore).  We are waiting DNA confirmation of diagnosis and specific mutation. 

We were planning to move back to the US (Houston) in June 2013 as we have two older daughters in school here.  However, recently we have growing concerns about James and possible loss of strength already & his very small size (along with a poor appetite).   Physical therapists here do not seem overly aggressive in education, continuity, or follow-up care.  Baseline eye and cardiac assessments performed so far are normal.

 

Debating if we should go back to the US now (and disrupt the school year) or wait 6 more months.

 

Looking to hear from other parents and experiences with Therapists & Specialists in the Early stages and aggressiveness of care plan in the first year of diagnosis.

 

Many Thanks in advance for feedback!  Nellie

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I'd say there's no rush to get back before the 6 months.

I looked into dmd care in Asia twice in the last 2 years, while considering an international assignment. Dr Wong here in the us at Cincinnati children's hospital had good things to say about available care in both Seoul and shanghai. I believe there were doctors at both cities that had trained under her. Dr Wong's is pretty widely respected in the dmd community. You might consider seeing one of these docs if travel there is an option for you. I know neither is around the corner from Singapore.

If you did come back early, the likely course of action would be a recommendation to start steroids, a home stretching program, and probably night splints. If you can get a steroids script there, and start stretching - get a nada chair - I think you'd be doing most of what they're going to wind up doing here. The 6 months isn't going to make much difference for the other baseline testing they'll do for cardiac, pulmonary, and bone health. All of this, of course, assuming there's no other health issues going on.

Good luck. Let us know what you decide to do.
Dear Keith,
Thank you for your reply! We have decided to return early to Houston. Physicians here in Singapore have been excellent and aggressive diagnostically, but resources here cannot compare to the US. Although Singapore is beautiful and westernized, there is significant cultural and communication challenges.

Looking forward to returning to Houston and being near the Houston medical center. Will likely start with specialists at Texas Children's Hospital, but may ultimately end up visiting Dr. Wong long term.

Today we received DNA confirmation of DMD. We are very low on the DMD learning curve,but are ready to fight (and raise $ and awareness). and get the most aggressive treatment available.. Hopefully, James will qualify for a study at some point.

Prayers to you and your family as you continue your DMD journey. Warmest regards, Nellir

Dear Keith,

We live in Vietnam where no specific care for Duchenne boys. Doctors just suggest Prenisolone, Vitamin D3, Calsium.

So, we required to do baseline testings for our boy.We do stretching by learning from video of Ms. Helen Poselt and moulded night splint by copying from Dafo. We also follow some parents in ppmd to give our son Omega, Protandim and Idebenon.

Those are all we can do. Sometimes, I feel very frustrated in our medical system.

You mentioned about nada chair. Can you explain me more about this facility.

Pls. give me yr advise what more we should do.

Much thanks.

Trinh
 
Keith Van Houten said:

I'd say there's no rush to get back before the 6 months.

I looked into dmd care in Asia twice in the last 2 years, while considering an international assignment. Dr Wong here in the us at Cincinnati children's hospital had good things to say about available care in both Seoul and shanghai. I believe there were doctors at both cities that had trained under her. Dr Wong's is pretty widely respected in the dmd community. You might consider seeing one of these docs if travel there is an option for you. I know neither is around the corner from Singapore.

If you did come back early, the likely course of action would be a recommendation to start steroids, a home stretching program, and probably night splints. If you can get a steroids script there, and start stretching - get a nada chair - I think you'd be doing most of what they're going to wind up doing here. The 6 months isn't going to make much difference for the other baseline testing they'll do for cardiac, pulmonary, and bone health. All of this, of course, assuming there's no other health issues going on.

Good luck. Let us know what you decide to do.
Do a search at the top right of this page for "nada chair". One of the threads that comes up is called "awesome technique for stretching". That thread has all the details about the nada chair. Any questions, let me know.

Much thanks, Keith.

Trinh

Keith Van Houten said:

Do a search at the top right of this page for "nada chair". One of the threads that comes up is called "awesome technique for stretching". That thread has all the details about the nada chair. Any questions, let me know.

Here's the direct link to that thread.  I couldn't do it last night from an IPAD.

 

http://community.parentprojectmd.org/forum/topics/1187424:Topic:158...

Yes, I found it. Much thanks.

Trinh

Keith Van Houten said:

Here's the direct link to that thread.  I couldn't do it last night from an IPAD.

 

http://community.parentprojectmd.org/forum/topics/1187424:Topic:158...

Nellie, I lived in Singapore with my family for 4 years. In fact, my 8 year old son was diagnosed there when he was 2. We thought of heading back to Australia as soon as we received the diagnosis, but I'm so glad we didn't. We stayed until he was 5 and then moved to London for 18 months. We figured we would take the opportunity to show him as much of the world as possible whilst we still could. It was the best decision we ever made.

We got him in to see Dr Stacey Taey at SIngapore University Hospital, and she was lovely. We put him on steroids immediately after his diagnosis. He had weekly physiotherapy (there are so many in singapore, and waiting lists are quite short) and we made sure he swam every single day. 

If you need to talk, or chat about our time in Singapore with a child living with Duchenne, drop me a line at realthomo@gmail.com.

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