Duchenne Parents

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Comment by Ariel Adler on Monday

I started a page for anyone who has or knows a little boy with dmd. its called End Duchennes. Feel free to join and share all the info u may have.

Comment by Kristin Linke on October 27, 2011 at 4:25pm

Gavin will be 5 on Nov. 3. He is starting to walk on his toes, more on his left leg then his right. He falls sometimes, and nothing is in way. I am not sure if he gets embarrassed, but when he falls, he says someone pushed him even though no one was around him. It is not easy.

Comment by Tracey Snyder on October 27, 2011 at 3:45pm

In response to Rebecca, i have two boys with DMD. Dylan is 19 and Zachary is 12. They have the exact same deletions (2-18). Their development has been completely different. Dylan was slower to walk and talk, but he walked until he was 13 and Zachary went into his chair full time by the age of 10.

Comment by Damien Howey on October 27, 2011 at 12:14pm

Hi my name is Damien Howey my son Addison was dignosed with DMD in May he is 3 years old and now i am ready to start talk to other parents

Comment by Char Burke on May 23, 2011 at 9:19pm

Hi Perlita - Our son had decay in a baby tooth that made us worry.  Here is what we did.  We had his teeth painted with a special coating of floride - in addition to the one kids get.  I brush his teeth with a kids Sonicare electric tooth brush every night.  It has a timer on it.  Then I use picks - the ones made by Oral B - to go in between on the bottom and then on the top, I use these type that are shaped like a 'Y' with floss in between.  Once that is done, then I brush with a manual tooth brush to get up around the gum line.  It was a struggle at first but now he is cooperative and I feel like a dental hygenist!  I tell you what makes teeth care hard for DMD boys - the steroids cause the mouth to be dryer and therefore placque can collect on teeth much easier.  2ndly - the muscles in  the face are more flacid so it's hard to get in between the teeth and the inside of the mouth 3rd - it hard for the DMD-ers to brush themselves b/c of the fine motor piece.  Anyway - what I am doing seems to have helped alot....Good luck. Char Burke - mom to Will age 8

Comment by Kristin Linke on May 23, 2011 at 3:32pm

My son Gavin went to the dentist a lot last year. 10 cavities. I believe DMD does affect their teeth. He got a silver cap just a few months ago. His tooth was chip, no reason why.

Comment by Jennifer and Billy Hollingsworth on May 23, 2011 at 2:48pm

Hi!  Is anyone going to the Annual Conference?  We are thinking of going - it would be our first one.  Has anyone gone before?  Would love some input!!!!  Thanks!!!

Comment by CHRISTINA RODRIGUEZ on May 23, 2011 at 2:29pm

Hi, my name is Christina. My son, Bryan has DMD. He is 8 y/o and in the 3rd grade. I just joined this group. We live in the Los Angeles area. I look forward to communicating with everyone.

 

Comment by Nancy DiDomenico on March 14, 2011 at 4:22pm

Hello,  I am new to the site but not to DMD. My son Vincent was diagnosed in June of 1998 when he was 5. He is 17 right now. He started using a wheelchair when i was almost 13. It was hard at first he couldn't understand why. He is doing well. If anyone would like to chat leave me a message.

Comment by Candace Miller on February 22, 2011 at 8:14pm

Hello Everyone!  I have 2 sons with DMD.  Joseph will be 6 on Thursday and Ethan just turned 1.  Joseph was diagnosed when I was 2 months pregnant with his brother.  Ethan was diagnosed at 2 months old.  It has been a rough the last year and a half but we're surviving!  I am always willing to talk so if you ever need someone to talk to or to just listen feel free to send me a message!

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