Early Years (diagnois-age 6) Discussions (19)

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Study of DS-5141b in Patients With Duchenne Muscular Dystrophy

 Has anyone participating/participated in this trial "Study of DS-5141b in Patients With Duchenne Muscular Dystrophy " ?

Started by Archana Maringanti

1 Apr 6, 2016
Reply by Jay Griffin

Which exons are to be skipped for deletions in exons 46-47 ?

My son aged 4.6 years has been diagnosed with DMD recently. He has deletions in exons 46-47. We doesn't know whether it is in frame or out…

Started by Archana Maringanti

2 Mar 29, 2016
Reply by Archana Maringanti

Exon 50 deletion?

Hi all, we found out last year that both our boys have DMD with a deletion of Exon 50 and was just wondering if there are other parents out…

Started by Corinne King

0 Mar 5, 2015

Limping without pain

Hi All,   Has anyone got kid with limping one leg without pain?? My 4 yr old is limping with one leg without any pain since last 2 days . I…

Started by Parul Makwana

4 Dec 14, 2014
Reply by Parul Makwana

Our first IEP

Aiden is only 3 and may qualify for some services and free preschool through our special education department here. My very first IEP is ne…

Started by Jessica Tucker

1 Oct 30, 2014
Reply by Gina Kopp

Recently diagnosed with deletion of Exon 49-50

Hi All,   My son Riyan has been recently diagnosed with DMD. It is very heart breaking , he is only 4 yr old. Has anyone else has exon 49-5…

Started by Parul Makwana

4 Sep 19, 2014
Reply by Parul Makwana

what can I do as early intervention for a 3.5 year old still gaining abilities?

I am new to PPMD and this online community.  My son is 3, turning 4 in late March.  We got our diagnosis when he was just 2.  I have yet to…

Started by Leslie Becknell Marx

11 Sep 18, 2014
Reply by himanshu Sharma

Various signs at various ages - helps all of us be prepared

My son 2.5 just got diagnosed with DMD. He is very active and running. no grower sign (uses hands on the lags to get up) except in few case…

Started by Pramit Patel

9 Dec 10, 2013
Reply by Maggie

What do you say?

My five year old was diagnosed with most likely duchenne a few months ago.  As I am beginning to navigate this new territory I have a few q…

Started by Iris Dunaway

3 Jun 25, 2013
Reply by Kristin Roof-Persons

18 month old advice please

My son Markie is 18 months old with DMD, we've known officially for 3 months. In some way I think I've known since he was 3-6 weeks old. Ju…

Started by Jessica Keim May

6 Feb 13, 2013
Reply by Wyatt's Mommy, Melissa


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