Also posted in Family Section.
My daughter Hayley, just turned 7 and is a double delta F508. She has been hospitalized 16 times over her short seven years including her diagnosis.
She just always seems to get sick, especially in fall and winter and usually requires inpatient hospitalizations 3-4 times per year with IV antibiotics, however, never really has anything major in her cultures. She has cultured PA twice, once in 2006 and once in 2009. She has had two bronchs in the last 4 years, neither of which came back with any bacteria.
Her PFT's range between the 80's and 100's, she is still getting the hang of the PFT technique and does not blow the air out fast enough.
Anyway she was just recently hospitalized and our pulmo wanted to check her immunoglobulin levels. Her Immunoglobulin G level is very low and he thinks this is the reason she keeps getting sick all the time.
On one hand this is devastating, because here is another condition on top of CF to deal with and on the other hand if we can now keep her from getting sick so much, it could be a good thing. Our doc says it is rare to have both CF and the Immunoglobulin Deficiency Disorder.
We still have more testing to do to in fact verify that she does have the Immunoglobulin Deficiency, which could mean infusions of immunoglobulin every 3 weeks for the rest of her life.
Just curious if anyone else has this or has been tested for it.
Thanks!
My daughter Hayley, just turned 7 and is a double delta F508. She has been hospitalized 16 times over her short seven years including her diagnosis.
She just always seems to get sick, especially in fall and winter and usually requires inpatient hospitalizations 3-4 times per year with IV antibiotics, however, never really has anything major in her cultures. She has cultured PA twice, once in 2006 and once in 2009. She has had two bronchs in the last 4 years, neither of which came back with any bacteria.
Her PFT's range between the 80's and 100's, she is still getting the hang of the PFT technique and does not blow the air out fast enough.
Anyway she was just recently hospitalized and our pulmo wanted to check her immunoglobulin levels. Her Immunoglobulin G level is very low and he thinks this is the reason she keeps getting sick all the time.
On one hand this is devastating, because here is another condition on top of CF to deal with and on the other hand if we can now keep her from getting sick so much, it could be a good thing. Our doc says it is rare to have both CF and the Immunoglobulin Deficiency Disorder.
We still have more testing to do to in fact verify that she does have the Immunoglobulin Deficiency, which could mean infusions of immunoglobulin every 3 weeks for the rest of her life.
Just curious if anyone else has this or has been tested for it.
Thanks!