negitive merison congenital muscular dystrophy

Elizabeth - posted on 05/13/2011 ( 3 moms have responded )

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Still looking for anyone with this or knows anything about it........ My boy is now 3 and I have only found 1 mom who's son had it .Love to find more!!!!!!!!!!!!!!!!!!!!!!
Thank so much
God Bless You All!!!
*Elizabeth*

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Kelcey - posted on 03/07/2012

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I have a 7 yr old with it. He had pneumonia at six months and we found out he aspirated his food back into his lungs. He had an elastic band put around his esophagus and a feeding tube. He only had the feeding tube for a few years before passing his swallowing test, then we had it removed. Our biggest issues are potty training and contractures in arms, hips, and knees. He wears kafo's which have been great for his ankles. He is very smart and does great in school. He has been using a power wheelchair since he was about 2 1/2. Biggest thing for him is his independance. Does your son see a pulmonologist? Ours got us a cough machine and oxygen monitor which come in very handy when he starts feeling under the weather.

Elizabeth - posted on 02/24/2012

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Hi its been so long since i've been on .I just found ur reply It's so wonderful to hear from u..... How have u been ? Leeland is 4 now and as cute as can be , I have a few questions if u dont mind me asking...

1- I'm havin so much trouble with Lee's lung he keeps getting pnemonia everytime I turn around any ideas to help avoid that?

2-U said u have feeding tube did that make life harder on u ?

3-When did u start needing ur vent at night ?

I'm so sorry i'm bombing u with question just havin hard time and u are the olny person I have found still living with the same thing as Lee

I hope to hear back from u would help alot if not well thanks for letting me know the future looks okay through teens

signed,

A loving mommy *Elizabeth*

Demi - posted on 07/30/2011

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I have it and am 19! I have lived a fairly typical life! I go to a local university and live in the dorm. I use a wheelchair, feedingtube and ventilator at night. The best thing my moms done for me is loved me and treated me the exact same! I know it is scary, but try not to get caught up in it and let him live a typical life. I won't say its easy, but its worth it looking at the big picture. I hope this helps if you have any questions my email is deckhoff@samford.edu. Good Luck and never give up HOPE! Much Love,
Demi
Also contact your local MDA office, they are a great resource!

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