Latest Activity: May 16, 2018
Started by Archana Maringanti. Last reply by Jay Griffin Apr 6, 2016.
Started by Archana Maringanti. Last reply by Archana Maringanti Mar 29, 2016.
Started by Corinne King Mar 5, 2015.
My son, he's 4 years old with DMD. At first time, we receive the result of gene test (deletion of exon 18-25), my family is really shock, sad, cried...But now, My son with 2 serious desease: Duchenne and Asperger, I realized that " There're no happy life, just happy moment". Everyday , I will collect happy moment for my son! That's all.
PPMD has launched a program – Risk/Benefit in Duchenne Therapies – to help inform the FDA and other government agencies, biopharmaceutical companies, and others about the treatment priorities and risk tolerance of the Duchenne community.
We’ve had a great response to our first survey, with more than 90 participants so far, but need a few more before we close it tomorrow.
If you are a parent or guardian of a very young children, especially age 4 and under, please consider taking our survey before 9 PM eastern tomorrow.
Thank you for your participation!
My son Nicky was potty trained at 3, but he has more frequent accidents, because if he is busy, or resting, it's so much more of an effort for him to get up and go to the bathroom. I talk to him about it, but don't really get after him too much. He also wears a pull up at night.
I have two boys that have dmd. My oldest is six. He has been potty trained for 2 years now but still wears pullups also. He takes miralax and has to see a urologist. My youngest just turned 4 and it took about a year to get him to potty train. Their neurologist also says it isnt because of the dmd. But with so many children with dmd it seems more likely that it does have something to do with it. It got frustrating potty training but eventually he came around and started. In their own time they will do it just be patient.
My son Shaun is not ptty trained either and he is 5 as well. He has his moments where he will go but then the next day wants nothing to do with it. Shaun is also short for his age i was told by a complete stranger. Is that "normal" for children with dmd.
Our son Colin was trained at 3. He did not have any problems at all, even at that age. I think DMD affects everyone a little bit differently,though.
When they were diagnosing him, they did ask about potty training, so it must have something to do with it!
Thank you for responding; our son just turned 5 - we are working on it but I'm definitely feeling pressure form grandparents etc... bummer
my son was 4 this year and he has just recently been trained in the last few months. He would go on the toilet but not all the time. He still wears a pull up to be at night just in case. I think every child is different, I don't think it is a result of DMD, he just isn't ready yet.
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