Jessica,
I know nothing of your other posts, so I am just responding to this one. It is appropriate to question what the doctors want to do, yes they are the smart educated ones, but they are not always right, and there is usually no one right way of doing things. That being said, there has to be something to why they think she needs IVs. I would have said personally she should of had IVs the first time, she cultured PA. Our clinic feels and research shows that if u r very aggressive w/ PA the first time, u can erradicate it longer. Still there are docs out there that just use Cipro and tobi, and it works, but I would just want to be aggressive as I could with my childs lungs to keep PA away as long as I could.
PFTs in the 80s at 5 are fine.....cause at that age, one day she could blow 80 and the next day 100. It is almost impossible to get an accurate test at that age, I think for us, it was closer to almost7, maybe 6.
Has she ever had a CT scan of her lungs or a broncoscopy? Prehaps this is something to ask your doc about doing before IVs. This will give u a baseline for comparrison, plus just because she is not culturing anything, does not mean there is not something hiding out down in her lungs
Hope things work out the best for your daughter. Yes hospitializations are hard, but not the end all. Do not get all hung up on people that did not have IVs til 16 or older or the fact that older people have higher PFTs. None of these can predict your daughters health, only you, her, her docs, compliance, and luck can do this
I know nothing of your other posts, so I am just responding to this one. It is appropriate to question what the doctors want to do, yes they are the smart educated ones, but they are not always right, and there is usually no one right way of doing things. That being said, there has to be something to why they think she needs IVs. I would have said personally she should of had IVs the first time, she cultured PA. Our clinic feels and research shows that if u r very aggressive w/ PA the first time, u can erradicate it longer. Still there are docs out there that just use Cipro and tobi, and it works, but I would just want to be aggressive as I could with my childs lungs to keep PA away as long as I could.
PFTs in the 80s at 5 are fine.....cause at that age, one day she could blow 80 and the next day 100. It is almost impossible to get an accurate test at that age, I think for us, it was closer to almost7, maybe 6.
Has she ever had a CT scan of her lungs or a broncoscopy? Prehaps this is something to ask your doc about doing before IVs. This will give u a baseline for comparrison, plus just because she is not culturing anything, does not mean there is not something hiding out down in her lungs
Hope things work out the best for your daughter. Yes hospitializations are hard, but not the end all. Do not get all hung up on people that did not have IVs til 16 or older or the fact that older people have higher PFTs. None of these can predict your daughters health, only you, her, her docs, compliance, and luck can do this