sick again

[Stacia]

I just have a question to you all. Stacia was very sick the past four days. We took her to our local Stat Care on Thursday with a bad sore throat. It then moved all to her lungs and we ended up at Akron Childrens all day yesterday. They did extra breating treatments on her and fitted her for the vest. I guess my question is I don't quite understand yet how all of this works. When you are having problems with your lungs is it always the CF or do you get a virus and it moves to your lungs because you have CF. I hope you understand my question Stacia doesn't have much problems with her lungs it is all digestive but they told us it could move to her lungs at any time. So I guess I am really scared that she is starting to have the lung problems too. They put her on Bactrim and Prednisone. Let me know what you guys thing about this.

 

[Stacia]

I just have a question to you all. Stacia was very sick the past four days. We took her to our local Stat Care on Thursday with a bad sore throat. It then moved all to her lungs and we ended up at Akron Childrens all day yesterday. They did extra breating treatments on her and fitted her for the vest. I guess my question is I don't quite understand yet how all of this works. When you are having problems with your lungs is it always the CF or do you get a virus and it moves to your lungs because you have CF. I hope you understand my question Stacia doesn't have much problems with her lungs it is all digestive but they told us it could move to her lungs at any time. So I guess I am really scared that she is starting to have the lung problems too. They put her on Bactrim and Prednisone. Let me know what you guys thing about this.

 

[Stacia]

I just have a question to you all. Stacia was very sick the past four days. We took her to our local Stat Care on Thursday with a bad sore throat. It then moved all to her lungs and we ended up at Akron Childrens all day yesterday. They did extra breating treatments on her and fitted her for the vest. I guess my question is I don't quite understand yet how all of this works. When you are having problems with your lungs is it always the CF or do you get a virus and it moves to your lungs because you have CF. I hope you understand my question Stacia doesn't have much problems with her lungs it is all digestive but they told us it could move to her lungs at any time. So I guess I am really scared that she is starting to have the lung problems too. They put her on Bactrim and Prednisone. Let me know what you guys thing about this.

 

[Stacia]

I just have a question to you all. Stacia was very sick the past four days. We took her to our local Stat Care on Thursday with a bad sore throat. It then moved all to her lungs and we ended up at Akron Childrens all day yesterday. They did extra breating treatments on her and fitted her for the vest. I guess my question is I don't quite understand yet how all of this works. When you are having problems with your lungs is it always the CF or do you get a virus and it moves to your lungs because you have CF. I hope you understand my question Stacia doesn't have much problems with her lungs it is all digestive but they told us it could move to her lungs at any time. So I guess I am really scared that she is starting to have the lung problems too. They put her on Bactrim and Prednisone. Let me know what you guys thing about this.

 

[Stacia]

I just have a question to you all. Stacia was very sick the past four days. We took her to our local Stat Care on Thursday with a bad sore throat. It then moved all to her lungs and we ended up at Akron Childrens all day yesterday. They did extra breating treatments on her and fitted her for the vest. I guess my question is I don't quite understand yet how all of this works. When you are having problems with your lungs is it always the CF or do you get a virus and it moves to your lungs because you have CF. I hope you understand my question Stacia doesn't have much problems with her lungs it is all digestive but they told us it could move to her lungs at any time. So I guess I am really scared that she is starting to have the lung problems too. They put her on Bactrim and Prednisone. Let me know what you guys thing about this.

 

[Ratatosk]

CFers sometimes have a tougher time when they do get sick because they more problems moving that thick sticky mucus.

DS has had colds, yet still his nose doesn't run 'cuz that stuff is so incredibly thick. It doesn't always move into his lungs, but he has had a couple upper respiratory infections and needed extra beatments and antibiotics.

 

[Ratatosk]

CFers sometimes have a tougher time when they do get sick because they more problems moving that thick sticky mucus.

DS has had colds, yet still his nose doesn't run 'cuz that stuff is so incredibly thick. It doesn't always move into his lungs, but he has had a couple upper respiratory infections and needed extra beatments and antibiotics.

 

[Ratatosk]

CFers sometimes have a tougher time when they do get sick because they more problems moving that thick sticky mucus.

DS has had colds, yet still his nose doesn't run 'cuz that stuff is so incredibly thick. It doesn't always move into his lungs, but he has had a couple upper respiratory infections and needed extra beatments and antibiotics.

 

[Ratatosk]

CFers sometimes have a tougher time when they do get sick because they more problems moving that thick sticky mucus.

DS has had colds, yet still his nose doesn't run 'cuz that stuff is so incredibly thick. It doesn't always move into his lungs, but he has had a couple upper respiratory infections and needed extra beatments and antibiotics.

 

[Ratatosk]

CFers sometimes have a tougher time when they do get sick because they more problems moving that thick sticky mucus.
<br />
<br />DS has had colds, yet still his nose doesn't run 'cuz that stuff is so incredibly thick. It doesn't always move into his lungs, but he has had a couple upper respiratory infections and needed extra beatments and antibiotics.
<br />
<br />

 

[letefk]

I guess the way we tend to think of it is this: because CF tends to create sticky mucus, any time you child does get an illness that settles into the lungs (the same bugs that all other kids can get), it is going to be much harder for them to clear that goo out. Then, because there is that sticky goo, other bacteria are going to be more likely to settle in, and so something simple like a cold turns into something more serious, like pneumonia. This is the cycle that the treatments and the vest try to break.

My daughters get A LOT of respiratory issues; if we are not aggressive with extra treatments and vest when they get the sniffles, they get pneumonia. If we are quick to give the extra treatments and CPT, they get over colds without any worse infections. Pulmozyme has also made a huge difference in breaking the cycle.

It might also help to know that this does not necessarily mean that her lung function is starting to deteriorate. Although my oldest has had all those pneumonias and hospitalizations, her lung function is excellent (PFTs above 100). When we were new to all this, we worried that she was being over treated, because she didn't seem that sick. Over time we have seen how much that aggressive treatment has helped. Now we think of it as protecting the lungs proactively, instead of treating them once they are badly infected.

Hope this helps. I can understand your fear; I feel it every time they get sick.

 

[letefk]

I guess the way we tend to think of it is this: because CF tends to create sticky mucus, any time you child does get an illness that settles into the lungs (the same bugs that all other kids can get), it is going to be much harder for them to clear that goo out. Then, because there is that sticky goo, other bacteria are going to be more likely to settle in, and so something simple like a cold turns into something more serious, like pneumonia. This is the cycle that the treatments and the vest try to break.

My daughters get A LOT of respiratory issues; if we are not aggressive with extra treatments and vest when they get the sniffles, they get pneumonia. If we are quick to give the extra treatments and CPT, they get over colds without any worse infections. Pulmozyme has also made a huge difference in breaking the cycle.

It might also help to know that this does not necessarily mean that her lung function is starting to deteriorate. Although my oldest has had all those pneumonias and hospitalizations, her lung function is excellent (PFTs above 100). When we were new to all this, we worried that she was being over treated, because she didn't seem that sick. Over time we have seen how much that aggressive treatment has helped. Now we think of it as protecting the lungs proactively, instead of treating them once they are badly infected.

Hope this helps. I can understand your fear; I feel it every time they get sick.

 

[letefk]

I guess the way we tend to think of it is this: because CF tends to create sticky mucus, any time you child does get an illness that settles into the lungs (the same bugs that all other kids can get), it is going to be much harder for them to clear that goo out. Then, because there is that sticky goo, other bacteria are going to be more likely to settle in, and so something simple like a cold turns into something more serious, like pneumonia. This is the cycle that the treatments and the vest try to break.

My daughters get A LOT of respiratory issues; if we are not aggressive with extra treatments and vest when they get the sniffles, they get pneumonia. If we are quick to give the extra treatments and CPT, they get over colds without any worse infections. Pulmozyme has also made a huge difference in breaking the cycle.

It might also help to know that this does not necessarily mean that her lung function is starting to deteriorate. Although my oldest has had all those pneumonias and hospitalizations, her lung function is excellent (PFTs above 100). When we were new to all this, we worried that she was being over treated, because she didn't seem that sick. Over time we have seen how much that aggressive treatment has helped. Now we think of it as protecting the lungs proactively, instead of treating them once they are badly infected.

Hope this helps. I can understand your fear; I feel it every time they get sick.

 

[letefk]

I guess the way we tend to think of it is this: because CF tends to create sticky mucus, any time you child does get an illness that settles into the lungs (the same bugs that all other kids can get), it is going to be much harder for them to clear that goo out. Then, because there is that sticky goo, other bacteria are going to be more likely to settle in, and so something simple like a cold turns into something more serious, like pneumonia. This is the cycle that the treatments and the vest try to break.

My daughters get A LOT of respiratory issues; if we are not aggressive with extra treatments and vest when they get the sniffles, they get pneumonia. If we are quick to give the extra treatments and CPT, they get over colds without any worse infections. Pulmozyme has also made a huge difference in breaking the cycle.

It might also help to know that this does not necessarily mean that her lung function is starting to deteriorate. Although my oldest has had all those pneumonias and hospitalizations, her lung function is excellent (PFTs above 100). When we were new to all this, we worried that she was being over treated, because she didn't seem that sick. Over time we have seen how much that aggressive treatment has helped. Now we think of it as protecting the lungs proactively, instead of treating them once they are badly infected.

Hope this helps. I can understand your fear; I feel it every time they get sick.

 

[letefk]

I guess the way we tend to think of it is this: because CF tends to create sticky mucus, any time you child does get an illness that settles into the lungs (the same bugs that all other kids can get), it is going to be much harder for them to clear that goo out. Then, because there is that sticky goo, other bacteria are going to be more likely to settle in, and so something simple like a cold turns into something more serious, like pneumonia. This is the cycle that the treatments and the vest try to break.
<br />
<br />My daughters get A LOT of respiratory issues; if we are not aggressive with extra treatments and vest when they get the sniffles, they get pneumonia. If we are quick to give the extra treatments and CPT, they get over colds without any worse infections. Pulmozyme has also made a huge difference in breaking the cycle.
<br />
<br />It might also help to know that this does not necessarily mean that her lung function is starting to deteriorate. Although my oldest has had all those pneumonias and hospitalizations, her lung function is excellent (PFTs above 100). When we were new to all this, we worried that she was being over treated, because she didn't seem that sick. Over time we have seen how much that aggressive treatment has helped. Now we think of it as protecting the lungs proactively, instead of treating them once they are badly infected.
<br />
<br />Hope this helps. I can understand your fear; I feel it every time they get sick.

 

[bmombtoo]

You guys are right. My pediatrician and asthma specialist told me years ago, before Josh wsa born, that if you have asthma when you start getting any kind of illness you have to boost up the asthma meds. With CF it is the same. Our kids have lowered immune responses ( uhh they get sick easier and faster). Josh had a stomach bug this past winter that landed him in the ER within eight hours of it starting for dehydration. The ER staff was far more concerned because he has CF.

He sick today and started an antibiotic for a sinus infection. Couple days of headache, peak flows that are slowly falling (not dangerous falls) and a 99.9 temp was enough for his pediatrician to move aggressively. In fact we some one of the partners and they all treat him aggressively.

Hang in there....it sucks....but all we can do is hang in there.

 

[bmombtoo]

You guys are right. My pediatrician and asthma specialist told me years ago, before Josh wsa born, that if you have asthma when you start getting any kind of illness you have to boost up the asthma meds. With CF it is the same. Our kids have lowered immune responses ( uhh they get sick easier and faster). Josh had a stomach bug this past winter that landed him in the ER within eight hours of it starting for dehydration. The ER staff was far more concerned because he has CF.

He sick today and started an antibiotic for a sinus infection. Couple days of headache, peak flows that are slowly falling (not dangerous falls) and a 99.9 temp was enough for his pediatrician to move aggressively. In fact we some one of the partners and they all treat him aggressively.

Hang in there....it sucks....but all we can do is hang in there.

 

[bmombtoo]

You guys are right. My pediatrician and asthma specialist told me years ago, before Josh wsa born, that if you have asthma when you start getting any kind of illness you have to boost up the asthma meds. With CF it is the same. Our kids have lowered immune responses ( uhh they get sick easier and faster). Josh had a stomach bug this past winter that landed him in the ER within eight hours of it starting for dehydration. The ER staff was far more concerned because he has CF.

He sick today and started an antibiotic for a sinus infection. Couple days of headache, peak flows that are slowly falling (not dangerous falls) and a 99.9 temp was enough for his pediatrician to move aggressively. In fact we some one of the partners and they all treat him aggressively.

Hang in there....it sucks....but all we can do is hang in there.

 

[bmombtoo]

You guys are right. My pediatrician and asthma specialist told me years ago, before Josh wsa born, that if you have asthma when you start getting any kind of illness you have to boost up the asthma meds. With CF it is the same. Our kids have lowered immune responses ( uhh they get sick easier and faster). Josh had a stomach bug this past winter that landed him in the ER within eight hours of it starting for dehydration. The ER staff was far more concerned because he has CF.

He sick today and started an antibiotic for a sinus infection. Couple days of headache, peak flows that are slowly falling (not dangerous falls) and a 99.9 temp was enough for his pediatrician to move aggressively. In fact we some one of the partners and they all treat him aggressively.

Hang in there....it sucks....but all we can do is hang in there.

 

[bmombtoo]

You guys are right. My pediatrician and asthma specialist told me years ago, before Josh wsa born, that if you have asthma when you start getting any kind of illness you have to boost up the asthma meds. With CF it is the same. Our kids have lowered immune responses ( uhh they get sick easier and faster). Josh had a stomach bug this past winter that landed him in the ER within eight hours of it starting for dehydration. The ER staff was far more concerned because he has CF.

He sick today and started an antibiotic for a sinus infection. Couple days of headache, peak flows that are slowly falling (not dangerous falls) and a 99.9 temp was enough for his pediatrician to move aggressively. In fact we some one of the partners and they all treat him aggressively.

Hang in there....it sucks....but all we can do is hang in there.