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| Pediatric Tracheostomies For parents and caregivers of children with tracheostomies. Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support. |
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#1
04-25-2007, 11:59 PM
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Myotonic Muscular dystrophy?
My daughter Madison who is three months old was recently diagnosed with myotonic muscular dystrophy and ohtahara syndrome! Does anyone here have myotonic dystrophy or know ne kids that do! I would like to meet parents going thru same thing!
thanks andrea God bless yall! 
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#2
04-26-2007, 10:36 AM
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Sorry Andrea, I have no advice for you. Hope someone else here can help.
Julie
__________________
  Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14). I am first and foremost a child
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#3
07-08-2009, 11:12 AM
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A long time ago
I know you posted this a LONG time ago, but I just wanted to see if you still check the site. My son, Connor, is one year old today and was born with myotonic dystrohy. How is she doing? My son is trached and on the vent still. His settings are pretty low though and we are weaning him a bit. 1/2 hour twice a day. Have you visited cureforkayla.com or the MD site? Did you attend the myotonic dystrophy conference in Chicago last year?
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