General Discussion (315)

Discussions Replies Latest Activity

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

Funding for equipment

Does anyone have a resource for help funding for a vehicle lift? We purchased a van, but now need a ramp or lift. We will also be needing a…

Started by Wendy St.Geme

1 Apr 22, 2010
Reply by Susan Rathfelder

How long to get deflazacort from Masters Marketing

Masters said that my order shipped on March 16 and I am still waiting on it.  Do I need to start contacting people?  Seems like this is lon…

Started by Kristi Koop

8 Apr 15, 2010
Reply by Lisa Vainosky

Looking into the future

I would like to know what others do when their little boy speaks of his future.  For example, my 5 year old grandson saw a shiny red sports…

Started by Terry Porcaro

14 Apr 12, 2010
Reply by Terry Porcaro


If anyone has any info on this, I'd love to know.. My son, Lucas, 10 years old was diagnosed with DMD 2 years ago. He recently went on a sc…

Started by Karen flor

6 Apr 11, 2010
Reply by Karen flor


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