General Discussion (316)

Discussions Replies Latest Activity

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, 2017
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, 2017

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, 2017

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, 2017

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, 2017

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…


0 Mar 31, 2017

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, 2017
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

Is there a specific bed or mattess that is recommended to help with sleep

Does anyone recommend a specific bed or mattress to help my son sleep? We are having to turn him over at least six times per night, he is 1…

Started by Johnny

2 Sep 7, 2016
Reply by Michelle Scaglione

Does the state of Florida and Tennessee offer acceptable assistance for Duchenne patients?

I am looking at a possible move to Florida (or Tennessee) from Ohio. My son is 16 and has Duchenne MD. We want to keep him in Ohio till hig…

Started by ana das

0 Sep 6, 2016


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