PPMD Community

General Discussion (318)

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
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	4	Aug 26, 2019 Reply by Ren
Osteoporosis My son, 18 years old, had a fall and fractured his femur 9 months back. He was walking well before this and now he is trying hard to walk i… Started by Sampreet	0	May 3, 2019
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 Diemler	6	Mar 9, 2019 Reply by Brenda Higginbotham
Anybody with a large deletion? Hi, My son was diagnosed with duchenne at the age of 1.5 years. He has very large deletion(2-44). He is currently 7 years of age and on pow… Started by Ashok Sangwan	2	Feb 20, 2019 Reply by Ashok Sangwan
Birthdays and Duchenne I'm not sure the best place to post this but here is a blog post I wrote about birthdays and what it means you have kids with Duchenne. In… Started by Sarah Kasner	0	Oct 29, 2018
exons 3 - 7 Hi We have just recently got Johns diagnosis as "deletions in exons 3 - 7". Otherwise we know very little. John is 10 and still quite mob… Started by James	26	Sep 13, 2018 Reply by Eileen DeLong
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, 2018 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, 2018 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, 2018 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, 2018 Reply by Keith & Jill VE