Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 Hi Beth tried you on your own e mail it didn't go through. Hi Beth Thank you for the reply, the doctors might as well gave him a death note today, we are having to pay for our own tests to hopefully capture any DNA abnormalities or mtDNA mutations apart from the common ones. What worries us most at present is the pain he is expierencing , we think most of it is due to stomach problems pain, gas etc and trying different laxitives out on him. He is also dystonic but they are slowly getting this under control. Does/did your daughter suffer form any of these problems? bethanycarol wrote: hi martin.i have a 5 year old daughter who was dx with leighs at age 2. she is nonverbal and nonambulatory. however, she is very aware of everything and communicates with a few signs and through facial expressions. she is very happy.i worry about what might happen and her prognosis, but she is "maintaining" at age 5! and is very happy!bethanymom to brennan 8, palmer & anna grace (leighs) 5> they are the same thing...Mito is covered by the Muscular dystrophy Association...> > it is not a true form of MD>..but the MDA now covers about 35 neuromuscular diseases that aren't MDs...> > is that what you mean? or did they diagnose a specific form of MD that is not Mito?> > deb...mom to four great kids and wife to one amazing guy!> www.LifeofLoveProject.org> www.debwells.com> > > > Please contact mito-owner with any problems or questions. > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.