General Discussion (319)

Discussions Replies Latest Activity

Hopeful, but skeptical....

I have read the journal cited by one of the posters here and I found it lacking in specifics and in details. Curtis, please show us Ryan's…

Started by Martin Daniel

2 Jun 5, 2010
Reply by Martin Daniel

Vent Question

My son has been using BiPap ventilation at night for several years. He will be adding NIV throughout the day soon. Does anyone have any inf…

Started by Kippi Harraid

2 Jun 2, 2010
Reply by Kippi Harraid

Boys allowed to play in their School Band Program

Has anyone heard of their kids playing in their school band.  Are they able to play some of the instruments.  Now I know there may be some…

Started by Cinni

7 May 27, 2010
Reply by Vee Lail

Shire Brand Calcort/Deflazacort

I want to make sure that I understand....Shire brand is no longer available??   Thanks  

Started by Darcy Tumminello

2 May 7, 2010
Reply by John R Henderson

Motrin, etc. recall

I'm a little bit worried at the moment.  I just heard on the news about Motrin, etc. recall.  My DMD son has a cold and I gave him some mot…

Started by Wyatt's Mommy, Melissa

5 May 6, 2010
Reply by Wyatt's Mommy, Melissa


Question:  Does anyone use the supplement Idebenone for either their children or taking it themselves?  If so, have you experienced any sid…

Started by Terry Porcaro

8 Apr 29, 2010
Reply by cheryl cliff

In the process of getting powerchair

When your child is becoming non ambulatory and in the process of getting a power chair.  What types of things should I be looking to buy or…

Started by Dina

4 Apr 28, 2010
Reply by Dina

Email from Brandon

Looks like everyone is receiving an email from a person named Brandon.  His page has no reference to DMD only a marketing website.  Does an…

Started by Kristi Koop

7 Apr 27, 2010
Reply by Kristi Koop

Who do we call when we have concerns?

We visit Cinci yearly and our local clinic two or three times a year.  I really wish I lived in Cinci as I believe they provide the best ca…

Started by Darcy Tumminello

4 Apr 27, 2010
Reply by Karen

dealing with my boys getting older

I have my 14 and 16 year old boys with the dmd and I have always taken baby steps so to speak when dealing with the different stages of thi…

Started by Cynthia Lynn Parker

4 Apr 27, 2010
Reply by Cynthia Lynn Parker


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