General Discussion (319)

Discussions Replies Latest Activity


Question for those with older children... What was the rate of progression in your son?  Was the loss of mobility and onset of cardiac and…

Started by Keith Van Houten

18 Aug 3, 2010
Reply by Patricia Walden

Growth Hormones

For those that already have your boys on growth hormones, do you give the shots in the a.m. or p.m.?  Is one really better than the other o…

Started by Laurie Paschal

4 Jul 27, 2010
Reply by Jennifer Shumsky

Insurance issue

Recently I was given prescription for bathroom modification's  and shower chair by my doctor for my son.on contacting insurance company the…

Started by Archana

5 Jul 15, 2010
Reply by Archana


We have a large yard and my son is growing out of his electric quad.  He's 81/2. Any sugggestions? Not sure we're ready for a bigger size q…

Started by Darcy Tumminello

5 Jul 14, 2010
Reply by Patti Frank

Opinions of which team of doctors to use???

I was curious to get some opinions from some DMD families who may have at one point went through some issues that I am currently having abo…

Started by JoAnne Powell

15 Jun 29, 2010
Reply by Cathy Johnson

HONOREE? Who is an outstanding individual in the Duchenne community?

I need to find an Honoree for the Charity Gala I am planning.  Does anyone have any ideas of an outstanding, influential individual who is…

Started by Morgan Eisenberg

6 Jun 25, 2010
Reply by cheryl cliff

Starting a Bi-Pap

My son, 9yrs old, just started using a Bi-Pap.  I'm having a terrible time getting him to wear it for even an hour at night.  He has very b…

Started by Karen Barnett

7 Jun 22, 2010
Reply by Karen

question about posting

I have tried twice to add a reply to a blog post and it comes up that it has to be approved before others can view it. Is this something ne…

Started by Janine

2 Jun 22, 2010
Reply by cheryl cliff

considering switch to deflazacort

My son is currently on 20mg of prednisone. I am trying to figure out how much deflazacort would be equivelant and what the cost would be. H…

Started by Janine

6 Jun 19, 2010
Reply by Keith Van Houten

More Positive Results on Stem Cell Treatments in Costa Rica

I would like to start by introducing myself. My name is Curt Renard and I am the stepfather of Ryan Benton. Ryan, as most of you may recall…

Started by curtis renard

41 Jun 8, 2010
Reply by Lisa Mancin


Need help using this community site? Visit Ning's Help Page.



© 2020   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service