PPMD Community

General Discussion (310)

Featured Discussions

Newly Diagnosed

Our son went into the hospital in February with a severe case of pneumonia. Saturday, he was running around like a normal kid, Sunday he st…

Started by Chad CampbellLatest Reply

How did you talk to your son about DMD?

My son Henry, 5 years old, was diagnosed in December. He thought the bloodwork that we had done would help the doctors fix him so he could…

Started by Claire DiemlerLatest Reply

Gonadal Mosaic

Hey there not sure if anyone knows much about Gonadal Mosaic but that's what the geneticist told me I have meaning that some of my eggs hav…

Started by Betty-Anne HeftLatest Reply

Discussions Replies Latest Activity

Emflaza (aka deflazacort) Approvals

Just curious - has anyone in the PPMD community received insurance approval for Emflaza (deflazacort) in the US?  We're currently working t…

Started by Keith & Jill VE

1 Jul 22
Reply by David

IV port for exon 51

Has anyone gotten IV port in the chest for Exondys 51 weekly infusion? how was the procedure? were there any issues after the surgery?

Started by Kirubha Balakumar

3 Jul 4
Reply by Kirubha Balakumar

Walking and DMD

Last week my 13 year old son went to camp walking...WALKING. We picked him up and he can't even stand today. I am NOT blaming camp (we LOVE…

Started by Eleanor Carter

0 Jul 2

Calorie needs

How can we estimate the calorie needs of a nearly non-ambulant child who is 16 Years old.I have been trying to find information about the o…

Started by Sampreet

0 Apr 26

Is Melatonin helpful for duchenne boys to have better nights?

Does anyone know of any helpful and safe product that allows the boys to have less disturbed nights?  My son is waking up 3 or 4 times a ni…

Started by Sharon & Dave Holgate

0 Apr 24

sleeping comfortably

My 14 year old is waking up 3 or 4 times a night.  Does anyone have any advice about beds that make the boys more comfortable?  I have hear…

Started by Sharon & Dave Holgate

0 Apr 24

Large in frame deletion of exon 3 to 29

Hello everyone. I am new to this site and hoping for some insight from fellow parents with children who have large in frame deletions. My s…

Started by Shaynee Ferguson

7 Apr 13
Reply by ANTONINO ENEIDE

Duchenne deletion 8-18

Hello everybody, my nephew is just 1 years old and has been very recently diagnosied with a Duchenne deletion exon from 8 to eighteen. He s…

Started by ANTONINO ENEIDE

0 Mar 31

Weight loss

Its been a while, but Im looking for advice from others experiences in regards to medications to give weight loss.  William is now 11.5 an…

Started by Jonathan

1 Feb 8
Reply by Sampreet

Beckers Type MD

Is the new drug - Eteplirsen - also approved for Becker's Type MD?

Started by Terry Ann Attaway

2 Oct 12, 2016
Reply by Nadja

RSS

© 2017   Created by PPMD.   Powered by

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