Cf with no mutations?

[antonette1279]

I can relate to you 100 percent. I have a baby boy that is a year old and has been sick since he was 2 weeks old and in the hospital 7 to 8 times. They have tested him for EVERYTHING and then decided to test for CF due to him being FTT and oily stools as well as ALWAYS congested and "wet lungs" The genetic screen came back "can not rule out CF" and he had borderline sweat tests. After repeating these tests and getting the same results, and doing about a million other tests they diagnosed him with CF based on clinical observation and questionable test results. He is doing better but does still have nebs quite often DAILY and medicine for GERD...We will soon have a vest once he is big enough...I will keep you and your family in my prayers

 

[SkateProMommy]

Thank you for all who replied! We are just taking it day be day and continuing to do the same treatments as we have been. I asked about SDS and PCD... was told that those were already thought about...

Antonette - I here you on the sickness, we are lucky that he hasn't been hospitalized yet but have come close...

 

[SkateProMommy]

Thank you for all who replied! We are just taking it day be day and continuing to do the same treatments as we have been. I asked about SDS and PCD... was told that those were already thought about...

Antonette - I here you on the sickness, we are lucky that he hasn't been hospitalized yet but have come close...

 

[SkateProMommy]

Thank you for all who replied! We are just taking it day be day and continuing to do the same treatments as we have been. I asked about SDS and PCD... was told that those were already thought about...
<br />
<br />Antonette - I here you on the sickness, we are lucky that he hasn't been hospitalized yet but have come close...