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Newly DiagnosedOur 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 MosaicHey 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 |
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Duchenne Boy Looking for PlayStation Buddies to Play Games WithOur 10-year-old son, Liam, would like to find some new buddies to play some games on his Playstation4. He likes NHL 20, Apex Legends, Star… Started by Jeffrey Kopp |
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Jun 26, 2020 Reply by Jeffrey Kopp |
IV port for exon 51Has 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 |
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Aug 26, 2019 Reply by Ren |
OsteoporosisMy 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 |
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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 |
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Feb 20, 2019 Reply by Ashok Sangwan |
Birthdays and DuchenneI'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 - 7Hi 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 |
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Sep 13, 2018 Reply by Eileen DeLong |
Brenda Wong Leaving CMCBrenda 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 |
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Mar 30, 2018 Reply by Robin Taylor |
Calorie needsHow 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 |
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Mar 17, 2018 Reply by Sarada Kuchibhotla |
breathing issuesMy 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 |
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Mar 16, 2018 Reply by Sarada Kuchibhotla |
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