Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 I wish I could give you a definite answer, but I don't think anyone can. Mitochondrial disease is so unknown as of now. Every doctor I have talked to about it, admit they don't know practically anything about this disease. But to help, yes some of these kids do live pretty normal lives. My daughter Grace is 19 months and has mito. Yes, she has issues that will be with her forever, but I think she will live a pretty normal life. I think for her anymore this is normal. She has a g tube to help give all the medicine, and she even helps push the medicine in. She seems to actually enjoy going to the doctors anymore, they are practically family at this point. Who knows what the future potentially holds, but today is great. I know this is morbid, but nobody really knows what can happen tomorrow. I live on the fact that they do not think she will die from this disease, so we can handle what happens next. Hopefully your son will not have this disease, but if he does try to learn what can happen and be prepared for it. This is always a great place to vent, or to share happy stories. Everybody here can relate to almost all of the problems, and emotions with this disease. Best of luck to you and your family. mom to 4 wonderful kids, and a new munchkin coming in Sept. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 , My son, Asher, almost 3, had a muscle biopsy done by shoffner in Atlanta last week. Dr. S. told us that there are a number of mito disorders that do not shorten life or cause cognitive disability. He told us that a number of mito disorders show up simply as myopathies (which is mostly what my son has, although he has GI issues as well). Anne R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 , My son, Asher, almost 3, had a muscle biopsy done by shoffner in Atlanta last week. Dr. S. told us that there are a number of mito disorders that do not shorten life or cause cognitive disability. He told us that a number of mito disorders show up simply as myopathies (which is mostly what my son has, although he has GI issues as well). Anne R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 I am new to this and Mito is just suspected in my son right now. We have our first appointment with the Genetics Clinic here in a couple of days. I am confused about what the future holds for kids that have mito. I know there are lots of different disorders but in general do some live normal productive lives or is that out of the question. I know there is no cure and that symptoms can be treated as they arise but some of the things I have read indicate this is a ravenous, deadly problem. Then on the other hand, I see there are many adults who at least believe they have mito which indicates that you can live longer with Mito. Even in our case we think I may have it too but are concentrating on my son first. I started having weird neuro problems when I was pregnant (numbness, stroke like episodes, twitching, heart palpitations, syncope...) and wonder if it could be mito related. Now if that's the case, I have at least until now had a normal life. Is it a matter of when it really shows up in a person? I know I am rambling but am just a bit confused and worried about what the future holds for my son. I know each case is different but would just like to hear some of your thoughts. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 I am new to this and Mito is just suspected in my son right now. We have our first appointment with the Genetics Clinic here in a couple of days. I am confused about what the future holds for kids that have mito. I know there are lots of different disorders but in general do some live normal productive lives or is that out of the question. I know there is no cure and that symptoms can be treated as they arise but some of the things I have read indicate this is a ravenous, deadly problem. Then on the other hand, I see there are many adults who at least believe they have mito which indicates that you can live longer with Mito. Even in our case we think I may have it too but are concentrating on my son first. I started having weird neuro problems when I was pregnant (numbness, stroke like episodes, twitching, heart palpitations, syncope...) and wonder if it could be mito related. Now if that's the case, I have at least until now had a normal life. Is it a matter of when it really shows up in a person? I know I am rambling but am just a bit confused and worried about what the future holds for my son. I know each case is different but would just like to hear some of your thoughts. Thanks! Quote Link to comment Share on other sites More sharing options...
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