Hi Everyone,,
So my daughter did not sweat enough for the second sweat test and will have to go back for another in four weeks. After the elevated IRT she was given a test that covers 35 poss. mutations... most common or more common of the cf mutations. She on that test came back with the deltaf508. the cutoff for newborns is thirty...thanks steve! The other piece of GOOD NEWS IS that they are going to do the sequencing testing on her, blood sample taken today, YAY!! Hip Hip HURRAY!!! So we should have the results of that in two weeks... as well as my carrier testing... they are sending it off to genzyme. Hopefully this is a good sign and these are dr's that really know what they need to do..relieved to not have to fight as hard as some of you but sorry that you have had to. I am very happy this all seems like progress in the right direction.. one of the biggest deciding factors was that she still isn't gaining weight sufficiently she is 6 wks out from her birth and only weighs 1 lb and 1 oz more she is up to 8 lbs 9oz's. So that flagged her, even more so for them. She is now also spitting up nearly everytime I burb her or feed her and even if I burp her frequently, or not at all. That seems to have really started today. SO on we go moving forward and perhaps upward! MLAG
So my daughter did not sweat enough for the second sweat test and will have to go back for another in four weeks. After the elevated IRT she was given a test that covers 35 poss. mutations... most common or more common of the cf mutations. She on that test came back with the deltaf508. the cutoff for newborns is thirty...thanks steve! The other piece of GOOD NEWS IS that they are going to do the sequencing testing on her, blood sample taken today, YAY!! Hip Hip HURRAY!!! So we should have the results of that in two weeks... as well as my carrier testing... they are sending it off to genzyme. Hopefully this is a good sign and these are dr's that really know what they need to do..relieved to not have to fight as hard as some of you but sorry that you have had to. I am very happy this all seems like progress in the right direction.. one of the biggest deciding factors was that she still isn't gaining weight sufficiently she is 6 wks out from her birth and only weighs 1 lb and 1 oz more she is up to 8 lbs 9oz's. So that flagged her, even more so for them. She is now also spitting up nearly everytime I burb her or feed her and even if I burp her frequently, or not at all. That seems to have really started today. SO on we go moving forward and perhaps upward! MLAG