Our only child, Dillion, was diagnosed with Muscular Dystrophy on July 10th, 2014.  The genetic test was confirmed on Sept. 29th, 2014 with Duchenne Muscular Dystrophy, deletion 49 - 54.  Dillion is 29 months old.

We will have our first appointment with Dr. Brenda Wong on Nov. 18, 19, and 20.  So if anyone will be in the area the same week, we would love to meet up. 

At this time, we have million of questions.  We are writing all down for Dr. Wong.  If anyone has any suggestion we should do right now to best benefit our son, please let us know.  We are looking forward to communicate with everyone here to share, learn , and progress together.  Best of health to everyone. 

 

Dennis

 

 

 

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Dennis - this is Kathi Kinnett from PPMD.  It sounds like you are doing all of the right things regarding care.  Dr. Wong will talk with you about when to start steroids, stretching and night splints (to keep your son's ankle joints loose).  While you are waiting for your appointment, you might want to register Dillion in DuchenneConnect (www.duchenneconnect.org).  Filling out this profile will allow the currators of this PPMD site to contact you if clinical trials start that are appropriate for Dillion.  Updating this information annually is very important for research, care and industry.  

If you have any quesitons that i can help you with, please feel free to contact me.  kathi@parentprojectmd.org

Warmly,

Kathi

Hi Kathi,

 

Thank you for the information.  I will do that.

Dennis - 

i live in Cincinnati.  I'd be happy to meet your lovely family while you are in town, if that might be helpful?

Kathi

Certainly.  Please keep in touch.

We are seeing Dr. Wong November 19th and 20, they just called with the appointment yesterday. Hayden is age 5.

Hi Amelia,

We might bump into each other in the hospital.  If not, we would love to meet you and your little guy.  If you are ok, please let me know.  

How old is your son Dennis? Hayden is 5. Not a lot of noticeable symptoms just slower then peers. I have had good and bad days since the diagnosis. We don't know a lot really except it is a nonsense mutation, but don't know what Exon. I will be getting tested while we are there. We are only there for 2 days.

I realize Dennis that you won't be able to answer this. Three days, what on earth are they doing that will take three days?
I know he will likely see neuro, cardio, pulm, and maybe a couple others and maybe lung function and heart tests but three days geez.

They scheduled us two days. The 19th from 10:30 til 3:00 and the 20th 8:30 til 11:30.
Janine, you are right I will not able to answer your question. I am not sure if this first visit has anything to do with it.
Where are you guys staying? Where are y'all from Dennis?

Ok so we go see Dr Wong next week, today my son also Type1 diabetic saw his endocrinologist at Vanderbilt in Nashville Tenneessee.  We were first referred to a Rheumatologist because the pediatrician was thinking myositis with the elevated cpk (8000).  He decided it would be best to do a dmd test and until today I had not seen any results from it just knew it was positive.  His endo has access to all his records because its all at the same place.  Anyway she printed out the results and I have no idea what they mean or how to interepret them.  Anyone know enough they could maybe help?

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