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 Perlita & Gordy Hains on June 20, 2011 at 2:22pm

hello everyone - haven't been on in some time... need help w/ potty training an almost 5 yr old - YIKES.  the Drs say DMD should not be the cause of his slow potty training... am I crazed?  Levi just doesn't want to cooperate.   Have any of you had boys not trained early??? help

 

 

Comment by ewh on March 8, 2011 at 7:03am
I would contact racemd based in Portland
I think organizations like that usually have the best info in the area
Good luck.
I promise it gets easier
Comment by Amanda Hammond on March 8, 2011 at 1:44am
Hello my name is Amanda and we just got my sons genetic testing back last week and found out he has dmd. Of course we are very overwhelmed right now and sad. I am trying to network on this site and mda to meet other people in this situation. Any advice would be appreciated. I am looking for families that go to the mda clinic in Spokane.
Comment by Kathy on February 21, 2011 at 8:19am
hi Sharon.  If you are on Facebook, there's a group called DMD Moms that also adds to the social connection with other people going through the same thing.  Glad you found PPMD!  It was a life saver for us! 
Comment by Andrew Kerr on February 20, 2011 at 1:01pm

Hi Sharon,  glad you found this place.  Definitely get signed up with DuchenneConnect.  I've been trying to keep an eye on trials around here, and from what I've seen, most require that the boys be on steroids for about a year.  We're in a much smaller center, south of Regina, Saskatchewan and there's not much close by.  The one going on now is out of Calgary, but from my understanding would require weekly visits to the clinic there, making it pretty much impossible for us to participate.  Hayden (5) has been on Deflazacort for almost a year now.  Our younger boy Cameron (2) will likely start in a year or so, when we feel he's ready to swallow a pill.

 

Another group my wife and I are involved with is Jesse's Journey.  I see by your page that you're actually very close to the founder, John Davidson.  He's in London, Ontario.  http://jessesjourney.com.  They hold an annual fund raiser.  If you have any questions about Jesse's Journey, feel free to contact me, or them directly.  They have a great staff there, and we stay in pretty close contact.  I'm sure John would love to meet you and your family.  He came out here last year to see us.  We're planning our second annual run/walk to raise funds for Jesse's Journey.

 

If there's anything we can do to help, just let us know. 

Comment by ewh on February 20, 2011 at 11:00am
Sharon look into Duchenne connect. It will get your boys registered to be alerted about trials. They are young though for most if not all trials. They could be in some studies perhaps?
Comment by Sharon Kippers on February 20, 2011 at 10:11am

Hello

I found this website through a friend. My two sons 2 and 4 have been diagnosed with dmd. It is really hard and finding support in this area is hard. Just have a question,If i would like to participate in any of these trials go on how would I go about doing that? Last year has been really hard. Just trying to connect with people going through the same thing.

Sharon

Comment by Brent Van Eperen on October 11, 2010 at 12:58am
Hi Betty,

My name is Jennifer Van Eperen. I just read your comment and I wanted to let you know that we live in Nebraska. I would be more than willing to visit with you. I know this is alot of information to wrap your head around! I sent a friend request on your page (it is under Brent Van Eperen). So when you respond I can give you our contact info. I hope to visit with you soon. Thanks! :)
Comment by Betty Vertin on October 9, 2010 at 7:23pm
My 4 year old son Max was diagnosed this past summer (2010) with DMD. I am just beginning to talk about and research DMD without breaking into tears and would really like to connect with someone in Nebraska to talk with. I would also just like to say that it has been wonderful to read the comments and discussions on the page. I have learned so much already.
Comment by Tagni McRae on June 27, 2010 at 12:52pm
Any advice for my son Graeme who is starting Kindergarten this August? We have a sheet of what to tell the school from Cincinnati, but wanting any practical tips from parents. He's still walking well and on Deflazacort. Thanks!
 

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