Early Years (diagnois-age 6)

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Early Years (diagnois-age 6)

Members: 174
Latest Activity: May 16, 2018

Discussions

Study of DS-5141b in Patients With Duchenne Muscular Dystrophy

Started by Archana Maringanti. Last reply by Jay Griffin Apr 6, 2016. 1 Reply

Which exons are to be skipped for deletions in exons 46-47 ?

Started by Archana Maringanti. Last reply by Archana Maringanti Mar 29, 2016. 2 Replies

Exon 50 deletion?

Started by Corinne King Mar 5, 2015. 0 Replies

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Comment by Nguyen Van Anh on September 5, 2013 at 3:42am

Dear all,

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.


Staff
Comment by PPMD on February 19, 2013 at 3:50pm

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!

Comment by Moria McMillen on May 3, 2012 at 12:14pm

Hi everyone! 

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. 

Comment by Courtney Price on December 11, 2011 at 2:03pm

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.

Comment by Sharon Kippers on December 11, 2011 at 10:05am

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.

Comment by Jeni Ward on September 23, 2011 at 6:05pm

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!

Comment by Ruth Griffith on September 23, 2011 at 4:58pm
My son finally got potty trained at 5.5.  He'll turn 6 in a couple of weeks.  It is really hard for him to "hold it" for a long time and I think it's a muscle thing.  We were walking from a parade to our car and I was so worried for him I found a place for him to pee in the bushes but he didn't even make it to the bushes.  One other note-- #2 is also sometimes hard for him to control.  He has had problems with constipation and from time to time we've given him MIralax, but that stuff is so powerful that he has a hard time "holding it" when it kicks in.  I'm trying to stop with the Miralax and just use lots of fiber and water to naturally treat the constipation.  Yeah, I agree, the doctors all say that DMD doesn't affect toilet training, but I disagree.
Comment by Perlita & Gordy Hains on September 21, 2011 at 9:21pm

Thank you for responding;  our son just turned 5 - we are working on it but I'm definitely feeling pressure form grandparents etc... bummer

 

Comment by Gina Manning on June 21, 2011 at 4:00pm
Hello everyone. I have two boys with DMD one is 8.5 the other is 5.5. The youngest still wears pull ups because he still has accidents. Going to the bathroom and being able to tell if you have to go requires the use of muscles also. Some of it i am sure is there way of trying to controll the situation but if they wait too long they can not hold it any longer. Both of my boys had these issues.
Gina
Comment by Bryan & Cari Sweet on June 21, 2011 at 10:29am

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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