My daughters with CF are 11 and 7 and this past Tuesday was the worst clinic visit we've ever had. Both girls had a huge drop in PFTs. Comparatively speaking, they are still good, but they are way down from their normal #'s. Both girl's FEV1's were 20% lower than 3 months ago. And the other #'s that I don't really understand were even worse. The dr was telling us all these #'s but I was so upset by that point it just went right over my head. I do remember her saying that the "small airways" were down on both girls from the 90%'s to the 50%'s. I don't even really know what that means but it scared the sh*t out of me. Both of the girls have been so healthy (lung wise anyway) and have never had a decline in PFTs before and to go down 20% at once is unbelievable to me. It's really freaking me out.
On top of that, the dr is sending Kaitlyn to an endocrinologist for possible growth hormone injections because she has fallen off the height chart and referring Kacie to another ENT because the first 4 sinus surgeries (in the last 8 months) were unsuccessful and she thinks she needs another one. Kacie is so blocked right now with polyps that we can't even do nasal washes. The water that normally would go in one side of her nose and come out the other, doesn't come out the other. It gushes out of her throat because it can't get through the nose.
What would cause PFTs to decline so quickly? Is it possible they just didn't feel well and they will be normal again next time? Does that happen? The dr added Pulmozyme for Kacie and Hypertonic Saline for Kaitlyn. She put both of them on Clindamycin and Kacie on Prednisone for the nasal problems. I'm hoping for some improvements. We are also having to do extra treatments for a while which requires the girls to do them at school. That is very hard for my older daughter who hides her problems from everyone. I just learned tonight that she has been doing the treatments in the bathroom of the nurse's office so no one will see her. That just ripped my heart out. But I don't know what to do. I can talk to her till I'm blue in the face about how she shouldn't be ashamed but she just doesn't get it. I respect her privacy and don't make her tell anyone anything but it hurts to know she is so ashamed.
We've been so lucky in that the girls have been healthy so far. I think we take it for granted it will alway be that way. When something happens that forces us to face reality, it's extremely difficult. It's almost like dealing with the diagnosis all over again. It's a wake up call that this is a real disease. This isn't just "take a couple of treatments a day and all will be fine". I cried all night Tuesday and have pretty much been a basketcase since them. I'm holding my breath until they call me and tell me what the girls cultured. I'm basically just wondering how common it is to have such a drop in PFTs from one visit to the next...especially since it was both girls, not just one of them. What would cause that? I have driven myself crazy trying to figure out what has changed since the last visit... we bought a house and moved, literally 2 doors down from where we were living. No change in schools or anything else. The new house has a pool so that is different but I expected that to be a help, not a problem. I keep thinking what if there was something in the water that was really bad... I'm basically just driving myself insane. Anything to calm my nerves would be appreciated.
Thanks!
On top of that, the dr is sending Kaitlyn to an endocrinologist for possible growth hormone injections because she has fallen off the height chart and referring Kacie to another ENT because the first 4 sinus surgeries (in the last 8 months) were unsuccessful and she thinks she needs another one. Kacie is so blocked right now with polyps that we can't even do nasal washes. The water that normally would go in one side of her nose and come out the other, doesn't come out the other. It gushes out of her throat because it can't get through the nose.
What would cause PFTs to decline so quickly? Is it possible they just didn't feel well and they will be normal again next time? Does that happen? The dr added Pulmozyme for Kacie and Hypertonic Saline for Kaitlyn. She put both of them on Clindamycin and Kacie on Prednisone for the nasal problems. I'm hoping for some improvements. We are also having to do extra treatments for a while which requires the girls to do them at school. That is very hard for my older daughter who hides her problems from everyone. I just learned tonight that she has been doing the treatments in the bathroom of the nurse's office so no one will see her. That just ripped my heart out. But I don't know what to do. I can talk to her till I'm blue in the face about how she shouldn't be ashamed but she just doesn't get it. I respect her privacy and don't make her tell anyone anything but it hurts to know she is so ashamed.
We've been so lucky in that the girls have been healthy so far. I think we take it for granted it will alway be that way. When something happens that forces us to face reality, it's extremely difficult. It's almost like dealing with the diagnosis all over again. It's a wake up call that this is a real disease. This isn't just "take a couple of treatments a day and all will be fine". I cried all night Tuesday and have pretty much been a basketcase since them. I'm holding my breath until they call me and tell me what the girls cultured. I'm basically just wondering how common it is to have such a drop in PFTs from one visit to the next...especially since it was both girls, not just one of them. What would cause that? I have driven myself crazy trying to figure out what has changed since the last visit... we bought a house and moved, literally 2 doors down from where we were living. No change in schools or anything else. The new house has a pool so that is different but I expected that to be a help, not a problem. I keep thinking what if there was something in the water that was really bad... I'm basically just driving myself insane. Anything to calm my nerves would be appreciated.
Thanks!