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Shannon Thomas
  • Female
  • Butler, PA
  • United States
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Talking to Classmates

Started this discussion. Last reply by Joshua's mom Sep 2, 2012. 3 Replies

 

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Profile Information

Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
Butler PA

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Scooter or wheelchair

Posted on January 20, 2011 at 2:59pm 8 Comments

I have an 8 year old who is still mobile.  He seems to be getting tired easier and falling more frequently.  We are at a point where we need to figure out what our next step should be.  I've been told it takes a while to get things in motion so I figured I'd start asking around. What is recommended a scooter or a chair?  Where do I begin?  Any suggestions or advice?

Diet and Deflazacort

Posted on February 6, 2009 at 11:03am 6 Comments

We have just ordered Deflazacort for our two boys. Before it gets here I am trying to find some information about what their diet should be. What things should they stay away from? My children are pretty healthy eaters but sometimes there are things we think are healthy and when we actually look at labels we discover they are not. I read something about a low sodium diet. What should the daily intake of sodium be? If anyone has some information about this please let me know!

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At 6:50pm on February 10, 2009, Darcy Tumminello said…
Shannon,

We found out two years ago about our son. He will be 7 in Feb. We went to Pittsburgh of course first. I found this website and heard all the great talk about Dr. Wong.(had to find out for myself)..and it is very true in my opinion. She is Dr. Brenda Wong from Cincinatti Childrens Hospital..You have to book well in advance to get an appointment. Our first appt was last March. She did Bone Scans and Blood tests that were not done locally. We found out he needs extra vitamin D..would not have known. She spent at least an hour with us just talking at the beginning of our first appt..very proactive and knows everything going on with potential treatments..etc..she gives us hope..
the clinic was set up as the first model clinic (I believe first) for all MDA clinicies...They have lung specialist and cardiologist on site as well..So the appt can be a two or three day stay..I believe our first appt was two days...meet with all (PT, Nutritionist, Dr. Wong, Cardio, Pulm) all at sep/ times during the day..My experience here was they all came in the room and ask if we had any questions...scared us with everyone there the first time!! Dr .Wong is willing to work with local clinic as well...so you can go to both if you would like..We are going out this July for second appt...Stay and touch and let me know if you have any other questions....good luck with diet..it's not that bad after you get use to foods they like and agree with meds...

Darcy
At 7:13am on February 7, 2009, Darcy Tumminello said…
Shannon,

I replied and then looked at your profile...I'm only minuites down the road from you...If you want to meet in the future, let me know...We take our son to Cinci,,Dr Wong once a year and Childrens in Pittsburgh in between...

Darcy
At 10:07am on January 26, 2009, Jacobs Mommom said…
Hi Shannon:

My name is Donna and the MomMom of 8 1/2 year old Jacob Shive with Duchenne MD. I live in Doylestown, PA and my daughter and her family live in Lansdale, PA.
I'll have to look on a map to see where Butler is:)
When you get time please go to the "Groups" Section and look for the PA Families Group and join. We are hoping to be able to get together this summer with everyone from PA and local NJ and surrounding states.
 
 
 

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