Hi guys,
I am new here and this looks like a great place for information and support regarding CF.
Basically, my 6 week old is awaiting the results of his blood test to determine the CF mutation(s) that he carries. He was screened positive for CF following the Newborn Screening here in Ontario. He came back with one mutation (not sure which) and we were called in to do a sweat test.
The first test came back borderline at 42 and we went in the following week for a second which came in at 43. His initial blood tests for vitamin levels etc. all came back fine, so now the wait resumes for the genetic tests.
This waiting is absolutely horrid. We did all the right testing prenatally (did not know and were not told there was a test available for CF testing) and it all came back in the clear so this potential diagnosis is a real shocker.
Has anyone else had to go through the "waiting game"? Right now he is a good little guy, gaining weight now (was a bit slow off the marker but gaining normally now) and seems healthy. I am going to assume CF and we are making plans accordingly for his future.
Its so hard... such a little, innocent, sweet guy with such a potentially devastating disease. <img src="i/expressions/face-icon-small-sad.gif" border="0">
Thanks for reading... its helping to just type this actually.
cheers
Me
I am new here and this looks like a great place for information and support regarding CF.
Basically, my 6 week old is awaiting the results of his blood test to determine the CF mutation(s) that he carries. He was screened positive for CF following the Newborn Screening here in Ontario. He came back with one mutation (not sure which) and we were called in to do a sweat test.
The first test came back borderline at 42 and we went in the following week for a second which came in at 43. His initial blood tests for vitamin levels etc. all came back fine, so now the wait resumes for the genetic tests.
This waiting is absolutely horrid. We did all the right testing prenatally (did not know and were not told there was a test available for CF testing) and it all came back in the clear so this potential diagnosis is a real shocker.
Has anyone else had to go through the "waiting game"? Right now he is a good little guy, gaining weight now (was a bit slow off the marker but gaining normally now) and seems healthy. I am going to assume CF and we are making plans accordingly for his future.
Its so hard... such a little, innocent, sweet guy with such a potentially devastating disease. <img src="i/expressions/face-icon-small-sad.gif" border="0">
Thanks for reading... its helping to just type this actually.
cheers
Me