Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Pat Our daughters immune labs also came back normal and she is also sick often. I thought she was the only one. What did they tell you why the labs would be normal and she is sick often? We are awaiting complex I final confirmation. Also, how old is your daughter? And what if anything are the doctors suggesting for her to stay healthy? regards rosy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Pat Our daughters immune labs also came back normal and she is also sick often. I thought she was the only one. What did they tell you why the labs would be normal and she is sick often? We are awaiting complex I final confirmation. Also, how old is your daughter? And what if anything are the doctors suggesting for her to stay healthy? regards rosy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 My daughter went to an immunologist and all of her immune test came back normal. She has complex I defect. She stays sick all the time, if she gets something it takes her forever to get over it. Is this common for mito patients? Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 My daughter went to an immunologist and all of her immune test came back normal. She has complex I defect. She stays sick all the time, if she gets something it takes her forever to get over it. Is this common for mito patients? Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 My son Wyatt has complex I and also sees an immunologist. His total IGA and IGG are low but not completly absent. Our Ped was not concerned but our immunologist was. He looked at the whole picture and decided that in Wyatt's case it is best to do preventive care. So they put him on amoxicillian to help fight off any illness. I really didn't see how it would work, but it does. Since being on the amoxicillian he is less run down and if he does get a runny nose he does not get worse. It clears up pretty quickly. Even though your child's immune numbers are normal does not necessarily mean that they are normal. Is your ped. more open to doing preventive care? If so you may want to mention the amoxicillian treatment. I know others on the board use the same procedure and have success. Good Luck. Geri-Anne and Wyatt, Complex I > > My daughter went to an immunologist and all of her immune test came > back normal. She has complex I defect. She stays sick all the > time, if she gets something it takes her forever to get over it. Is > this common for mito patients? > > Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 My son Wyatt has complex I and also sees an immunologist. His total IGA and IGG are low but not completly absent. Our Ped was not concerned but our immunologist was. He looked at the whole picture and decided that in Wyatt's case it is best to do preventive care. So they put him on amoxicillian to help fight off any illness. I really didn't see how it would work, but it does. Since being on the amoxicillian he is less run down and if he does get a runny nose he does not get worse. It clears up pretty quickly. Even though your child's immune numbers are normal does not necessarily mean that they are normal. Is your ped. more open to doing preventive care? If so you may want to mention the amoxicillian treatment. I know others on the board use the same procedure and have success. Good Luck. Geri-Anne and Wyatt, Complex I > > My daughter went to an immunologist and all of her immune test came > back normal. She has complex I defect. She stays sick all the > time, if she gets something it takes her forever to get over it. Is > this common for mito patients? > > Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Pat, My daughter is this way also. She is usually sick this time of year thru feb or march. She picks up everything, gets sicker, and takes longer to recover. She usually has an illness or 2 in the summer as well. She has had her immune system checked many times in her early years, and she always has normal results. She was living with a diagnosis of nonspecific mito for 5 yrs, but after a recent blood test, she was found to have the gene mutation for Rett Syndrome. She may yet have 2ndary mito issues, but that has not yet been confirmed. e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Pat, My daughter is this way also. She is usually sick this time of year thru feb or march. She picks up everything, gets sicker, and takes longer to recover. She usually has an illness or 2 in the summer as well. She has had her immune system checked many times in her early years, and she always has normal results. She was living with a diagnosis of nonspecific mito for 5 yrs, but after a recent blood test, she was found to have the gene mutation for Rett Syndrome. She may yet have 2ndary mito issues, but that has not yet been confirmed. e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) Quote Link to comment Share on other sites More sharing options...
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