PPMD Community

General Discussion (315)

Sort by:

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

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

View All

RSS

Discussions	Replies	Latest Activity
Brenda Wong Leaving CMC Brenda Wong will be leaving Cincinati Medical Center. i got schoked knowing this news. she is great doctor i came across and felt my son is… Started by ven	3	Mar 30 Reply by Robin Taylor
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	1	Mar 17 Reply by Sarada Kuchibhotla
breathing issues My son who is aged 20 years has lot of breathing issues. Although he is on a trilogy unit at night time which has helped him sleep better r… Started by Sarada Kuchibhotla	2	Mar 16 Reply by Sarada Kuchibhotla
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	12	Feb 14 Reply by Keith & Jill VE
Equipment & adaptive technology available Folks: My husband, Peter, had Duchenne and died earlier this year at age 33. We live in the greater NYC area. I have given away much of… Started by JESSICA Resnick-AULT	0	Oct 20, 2017
Is there a more active forum somewhere? I notice that there seems to be minimal amounts of communication on this forum. Did members transition to another forum somewhere else or i… Started by Bruce Ward	2	Oct 5, 2017 Reply by Bruce Ward
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