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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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Joshua's mom replied to Shannon Thomas's discussion Talking to Classmates
"We had a presentation at Joshua's school last year. We had fireman's boots for the classmates to do an obstacle course while wearing them, trying to write their names with big gloves on and they also used "disorientation glasses"…"
Sep 2, 2012
Lisa Groeger replied to Shannon Thomas's discussion Talking to Classmates
"Ask PPMD to send you a DVD copy of the Brain Pop video so they can play it on a dvd player in the classroom.  We showed it in the library to the entire 5th grade not just my son's class and the kids asked some great questions…"
Aug 29, 2012
Shannon Thomas posted a discussion

Talking to Classmates

MY son is entering 4th grade and has expressed an interest in us talking to his class about Duchenne. You tube is blocked at his school so the Brain Pop video is out. Any one have any suggestions or advice about how they have gone about discussing this.
Aug 28, 2012
Karen commented on Shannon Thomas's blog post Scooter or wheelchair
"Hi When our son entered the 5th grade he had a difficult time getting out to recess and back in the time allowed.  His classroom was on the 2nd floor in the furtherst corner of the building.  We said "what's with…"
Feb 12, 2011
Tammy Angel commented on Shannon Thomas's blog post Scooter or wheelchair
"Hi Shannon, Do you have a physical therapist that you are currently working with?  They are the best to advise on which to get.  There are pros and cons to both.  I am not sure where you live, but going by the Oklahoma rules, Medicaid…"
Jan 26, 2011
Jennifer Hale commented on Shannon Thomas's blog post Scooter or wheelchair
"Hi Shannon, We got our son a scooter at age 10 (he is now 12).  It was relatively easy to get the scooter and we ended up with the Go Go Elite.  My son had a problem holding the drive lever with his hand as it needed to be pulled back at…"
Jan 26, 2011
christine good commented on Shannon Thomas's blog post Scooter or wheelchair
"Does anyone have a Zappy 3 pro? "
Jan 23, 2011
Keith Van Houten commented on Shannon Thomas's blog post Scooter or wheelchair
"For scooters, a lot of people have recommended the Go Go Elite Traveller from Pride Mobility.  link   It's a smaller sized unit.  We tried one of these and a emotion power assist chair a couple of weeks ago.  We're…"
Jan 22, 2011

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Age(s) of child(ren)/individual(s) with Duchenne:
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…

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...

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

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...

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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