Hello! My name is Melanie and I have a one year old boy. Please forgive me if I am incorrect with any phrasing or info, I’m still learning about CF and this is all new to me!
When my son was a newborn, his blood screen came back with an IRT of 67. We re-screened a week later and it was the same but there were no mutations found in the genes. They said due to the lack of mutation it as very unlikely he has CF and that we should simply watch for symptoms.
It’s a year later and he hasn’t had any outstanding symptoms. However I just learned yesterday that it can take some time for symptoms to manifest, which I didn’t know. His weight has slowed and he did have RSV/bronchiolitis. I guess I just feel like it shouldn’t have been brushed off as it was, and a sweat test should’ve been done seeing as it’s non-intrusive and relatively affordable.
That being said, should I request a sweat test? Has anyone else had this? I feel like 67 is too high to brush off, even though no mutations were found? I’m just not sure what to do! Thank you
When my son was a newborn, his blood screen came back with an IRT of 67. We re-screened a week later and it was the same but there were no mutations found in the genes. They said due to the lack of mutation it as very unlikely he has CF and that we should simply watch for symptoms.
It’s a year later and he hasn’t had any outstanding symptoms. However I just learned yesterday that it can take some time for symptoms to manifest, which I didn’t know. His weight has slowed and he did have RSV/bronchiolitis. I guess I just feel like it shouldn’t have been brushed off as it was, and a sweat test should’ve been done seeing as it’s non-intrusive and relatively affordable.
That being said, should I request a sweat test? Has anyone else had this? I feel like 67 is too high to brush off, even though no mutations were found? I’m just not sure what to do! Thank you
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