General Discussion (317)

Discussions Replies Latest Activity

Creatine Kinase (CK) Ranges for Becker

I have not been able to find a reference to how high CK can go in Becker.  I wonder if some Becker parents could share their son's serum Cr…

Started by Bruce Ward

0 Sep 28, 2017

Mutation in Exon 12

Hi All, I just want to see if anyone else has Nonsense mutation in Exon 12. Just want to keep touch with all the people with this mutation…

Started by ven

0 Sep 11, 2017

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
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, 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

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