Early Years (diagnois-age 6)


Early Years (diagnois-age 6)

Members: 174
Latest Activity: May 16, 2018


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

Comment Wall


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Comment by Lee Ann Faeth on May 26, 2008 at 12:52am
Hi Lisa, My son Avery was diagnosed with DMD in February 2007 right before his 3rd birthday. Like you the only limitations that have been recommended are limiting climbing up and down stairs and excessive concentric exercise. When he was first diagnosed, I tried to make sure he took alot of breaks when when he was playing or doing a lot of walking, but he really seems to know his limitations and will tell me when he needs to take a break without me suggesting it to him. He has just learned to ride a bicycle (with training wheels) and can also ride a scooter, so I don't want to limit him and not allow him to do the things his peers are doing as long as I know he isn't wearing himself out. Although he isn't aware of his diagnosis, he is quite in tune with his body and limitations.

What I try to enforce now is conserving energy during the day by making sure that he sits in a proper position to support his trunk. (Sitting at a 90 degree angle with feet on the floor) I also use slant boards when he's coloring, drawing, etc and use markers vs. crayons because he doesn't have to use extra strength to push the crayon. He also has special scissors for cutting that only use one motion of closing instead of two.
Comment by Liisa Underwood on May 25, 2008 at 11:30pm
My son, Connor, is almost 3 and was diagnosed with DMD in September 2007. It was a spontaneous mutation with deletions 48-52. Mostly, non-symptomatic. Stairs and endurance are the main issues. I look forward to meeting more families.

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