Quote:
Originally Posted by vbaltazar
I am so sorry for what you and your family must be going through at this time. I can relate to how you must be feeling not knowing whats going on. I was told about 3 weeks ago my son may have Duchenne Muscular Dystrophy The problem is that the specialist won't see him till 2-4 months. Of course my son is not having as many complications as your daughter but as a mother I can only imagine how you most be feeling. I will pray for yor daughter and all your family that you can finally find out what is the real reason for all her complications. The worst part is not knowing.
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yes it is very hard not knowing. especially when many doctors start to say that it is pointless to keep searching for a diagnosis. the problem with neuromuscular disorders it seems is that they are mostly untreatable and you can only aid the respiratory system and make life more comfortable for your child. there is always a what if though in your mind , what if she has something that is treatable , then you have to say to yourself what are we putting our daughter through in the search.
at this point we are now thinking to ourselves the most sensible option is to collate all the information and test results that exist already and see about asking drs to look over and see if they have any ideas.