Question about Tune ups

L

lexisangels05

New member
Hi everyone....its been a while since Ive written or responded, but I do have a question for you all with CF. My daughter Lexi is 5. She has resistant staph and pseudomonas in her cultures. She has had this consitantly for 1-2 years. She takes Tobi every other month and Zithromax M,W,F. She has been surprisingly well for the last few years. She would only get one cold per year which always amazed our CF docs. This sick season has been completely different. She has been sick almost consitantly since Oct. She had a bad repiratory infection that lasted about a month, but a strong dose of prednisone finally helped. She then cought RSV, had Pneumonia, then a bad ear infection. I am really not use to this. She has not been back to baseline since before Oct.

My question to you all is when did they start doing the tune ups and what sicknesses do they base this on? I am seriously wondering if she needs this. What about bronchs too?
 
L

lexisangels05

New member
Hi everyone....its been a while since Ive written or responded, but I do have a question for you all with CF. My daughter Lexi is 5. She has resistant staph and pseudomonas in her cultures. She has had this consitantly for 1-2 years. She takes Tobi every other month and Zithromax M,W,F. She has been surprisingly well for the last few years. She would only get one cold per year which always amazed our CF docs. This sick season has been completely different. She has been sick almost consitantly since Oct. She had a bad repiratory infection that lasted about a month, but a strong dose of prednisone finally helped. She then cought RSV, had Pneumonia, then a bad ear infection. I am really not use to this. She has not been back to baseline since before Oct.

My question to you all is when did they start doing the tune ups and what sicknesses do they base this on? I am seriously wondering if she needs this. What about bronchs too?
 
L

lexisangels05

New member
Hi everyone....its been a while since Ive written or responded, but I do have a question for you all with CF. My daughter Lexi is 5. She has resistant staph and pseudomonas in her cultures. She has had this consitantly for 1-2 years. She takes Tobi every other month and Zithromax M,W,F. She has been surprisingly well for the last few years. She would only get one cold per year which always amazed our CF docs. This sick season has been completely different. She has been sick almost consitantly since Oct. She had a bad repiratory infection that lasted about a month, but a strong dose of prednisone finally helped. She then cought RSV, had Pneumonia, then a bad ear infection. I am really not use to this. She has not been back to baseline since before Oct.

My question to you all is when did they start doing the tune ups and what sicknesses do they base this on? I am seriously wondering if she needs this. What about bronchs too?
 
L

lexisangels05

New member
Hi everyone....its been a while since Ive written or responded, but I do have a question for you all with CF. My daughter Lexi is 5. She has resistant staph and pseudomonas in her cultures. She has had this consitantly for 1-2 years. She takes Tobi every other month and Zithromax M,W,F. She has been surprisingly well for the last few years. She would only get one cold per year which always amazed our CF docs. This sick season has been completely different. She has been sick almost consitantly since Oct. She had a bad repiratory infection that lasted about a month, but a strong dose of prednisone finally helped. She then cought RSV, had Pneumonia, then a bad ear infection. I am really not use to this. She has not been back to baseline since before Oct.

My question to you all is when did they start doing the tune ups and what sicknesses do they base this on? I am seriously wondering if she needs this. What about bronchs too?
 
L

lexisangels05

New member
Hi everyone....its been a while since Ive written or responded, but I do have a question for you all with CF. My daughter Lexi is 5. She has resistant staph and pseudomonas in her cultures. She has had this consitantly for 1-2 years. She takes Tobi every other month and Zithromax M,W,F. She has been surprisingly well for the last few years. She would only get one cold per year which always amazed our CF docs. This sick season has been completely different. She has been sick almost consitantly since Oct. She had a bad repiratory infection that lasted about a month, but a strong dose of prednisone finally helped. She then cought RSV, had Pneumonia, then a bad ear infection. I am really not use to this. She has not been back to baseline since before Oct.
<br />
<br />My question to you all is when did they start doing the tune ups and what sicknesses do they base this on? I am seriously wondering if she needs this. What about bronchs too?
 
R

Ready2Dance

New member
My first tune up was when I had a drop in FEV1 from an infection. Are her cultures showing an increase in bacteria? But I was about 12 when I had my first tune up. But that wasn't the norm for the CFers in my clinic. Most of the people in house were surprised that I hadn't been in before then.

Is she responding to any of the antibiotics? I didn't have a bronch until I stopped responding to antibiotics as well in order to get a better sputum sample and for the doc to look at my lungs and see how they were. They always have thought the less time they spent messing around inside the lungs, the better. Bronchs have been held off as a final solution for me until I started growing yeast that I couldn't culture in a normal sputum... we had to go fishing for it.

I'm sorry there isn't a clearer answer for you, but I hope this helps a little. Keep your chin up and fight like hell for what you feel like your daughter needs! You're the only one that sees her everyday and know what she's been dealing with... regardless of what the doctors are seeing.
 
R

Ready2Dance

New member
My first tune up was when I had a drop in FEV1 from an infection. Are her cultures showing an increase in bacteria? But I was about 12 when I had my first tune up. But that wasn't the norm for the CFers in my clinic. Most of the people in house were surprised that I hadn't been in before then.

Is she responding to any of the antibiotics? I didn't have a bronch until I stopped responding to antibiotics as well in order to get a better sputum sample and for the doc to look at my lungs and see how they were. They always have thought the less time they spent messing around inside the lungs, the better. Bronchs have been held off as a final solution for me until I started growing yeast that I couldn't culture in a normal sputum... we had to go fishing for it.

I'm sorry there isn't a clearer answer for you, but I hope this helps a little. Keep your chin up and fight like hell for what you feel like your daughter needs! You're the only one that sees her everyday and know what she's been dealing with... regardless of what the doctors are seeing.
 
R

Ready2Dance

New member
My first tune up was when I had a drop in FEV1 from an infection. Are her cultures showing an increase in bacteria? But I was about 12 when I had my first tune up. But that wasn't the norm for the CFers in my clinic. Most of the people in house were surprised that I hadn't been in before then.

Is she responding to any of the antibiotics? I didn't have a bronch until I stopped responding to antibiotics as well in order to get a better sputum sample and for the doc to look at my lungs and see how they were. They always have thought the less time they spent messing around inside the lungs, the better. Bronchs have been held off as a final solution for me until I started growing yeast that I couldn't culture in a normal sputum... we had to go fishing for it.

I'm sorry there isn't a clearer answer for you, but I hope this helps a little. Keep your chin up and fight like hell for what you feel like your daughter needs! You're the only one that sees her everyday and know what she's been dealing with... regardless of what the doctors are seeing.
 
R

Ready2Dance

New member
My first tune up was when I had a drop in FEV1 from an infection. Are her cultures showing an increase in bacteria? But I was about 12 when I had my first tune up. But that wasn't the norm for the CFers in my clinic. Most of the people in house were surprised that I hadn't been in before then.

Is she responding to any of the antibiotics? I didn't have a bronch until I stopped responding to antibiotics as well in order to get a better sputum sample and for the doc to look at my lungs and see how they were. They always have thought the less time they spent messing around inside the lungs, the better. Bronchs have been held off as a final solution for me until I started growing yeast that I couldn't culture in a normal sputum... we had to go fishing for it.

I'm sorry there isn't a clearer answer for you, but I hope this helps a little. Keep your chin up and fight like hell for what you feel like your daughter needs! You're the only one that sees her everyday and know what she's been dealing with... regardless of what the doctors are seeing.
 
R

Ready2Dance

New member
My first tune up was when I had a drop in FEV1 from an infection. Are her cultures showing an increase in bacteria? But I was about 12 when I had my first tune up. But that wasn't the norm for the CFers in my clinic. Most of the people in house were surprised that I hadn't been in before then.
<br />
<br />Is she responding to any of the antibiotics? I didn't have a bronch until I stopped responding to antibiotics as well in order to get a better sputum sample and for the doc to look at my lungs and see how they were. They always have thought the less time they spent messing around inside the lungs, the better. Bronchs have been held off as a final solution for me until I started growing yeast that I couldn't culture in a normal sputum... we had to go fishing for it.
<br />
<br />I'm sorry there isn't a clearer answer for you, but I hope this helps a little. Keep your chin up and fight like hell for what you feel like your daughter needs! You're the only one that sees her everyday and know what she's been dealing with... regardless of what the doctors are seeing.
 
S

Sheridan

New member
My eldest had his first and only tune up at around 5 because he couldn't shake a cold and his culture turned up psydomonis (sp?). He has not been sick in the almost 4 years since, not once. In terms of broncs Jordan was part of a study and had bronchs yearly and when antibiotics were not working, so I can't help you with that one.

My youngest (17 months) has had three tune ups already. The first one because he was continually sick. The second one came about becuase he is a rapid breather and they wanted to do a bronch to see what was going on - outwards he was as healthy as - but inside he was a mess. He had the bronch with a CT scan as well, which showed up some damage to his lungs and increased airway size. So he had his second tune up. His third tune up came because three weeks after the second one he was sick again. This tune up lasted 3 weeks. Also got fitted with a port as they are calling him chronic and say he will more than likely require quarterly tune ups. We will also be having annual CT broncs to keep a close eye on things - got to fly 5 hours away to have that done).

If you are concerned why not suggest a tune up - it doesn't hurt to ask.
 
S

Sheridan

New member
My eldest had his first and only tune up at around 5 because he couldn't shake a cold and his culture turned up psydomonis (sp?). He has not been sick in the almost 4 years since, not once. In terms of broncs Jordan was part of a study and had bronchs yearly and when antibiotics were not working, so I can't help you with that one.

My youngest (17 months) has had three tune ups already. The first one because he was continually sick. The second one came about becuase he is a rapid breather and they wanted to do a bronch to see what was going on - outwards he was as healthy as - but inside he was a mess. He had the bronch with a CT scan as well, which showed up some damage to his lungs and increased airway size. So he had his second tune up. His third tune up came because three weeks after the second one he was sick again. This tune up lasted 3 weeks. Also got fitted with a port as they are calling him chronic and say he will more than likely require quarterly tune ups. We will also be having annual CT broncs to keep a close eye on things - got to fly 5 hours away to have that done).

If you are concerned why not suggest a tune up - it doesn't hurt to ask.
 
S

Sheridan

New member
My eldest had his first and only tune up at around 5 because he couldn't shake a cold and his culture turned up psydomonis (sp?). He has not been sick in the almost 4 years since, not once. In terms of broncs Jordan was part of a study and had bronchs yearly and when antibiotics were not working, so I can't help you with that one.

My youngest (17 months) has had three tune ups already. The first one because he was continually sick. The second one came about becuase he is a rapid breather and they wanted to do a bronch to see what was going on - outwards he was as healthy as - but inside he was a mess. He had the bronch with a CT scan as well, which showed up some damage to his lungs and increased airway size. So he had his second tune up. His third tune up came because three weeks after the second one he was sick again. This tune up lasted 3 weeks. Also got fitted with a port as they are calling him chronic and say he will more than likely require quarterly tune ups. We will also be having annual CT broncs to keep a close eye on things - got to fly 5 hours away to have that done).

If you are concerned why not suggest a tune up - it doesn't hurt to ask.
 
S

Sheridan

New member
My eldest had his first and only tune up at around 5 because he couldn't shake a cold and his culture turned up psydomonis (sp?). He has not been sick in the almost 4 years since, not once. In terms of broncs Jordan was part of a study and had bronchs yearly and when antibiotics were not working, so I can't help you with that one.

My youngest (17 months) has had three tune ups already. The first one because he was continually sick. The second one came about becuase he is a rapid breather and they wanted to do a bronch to see what was going on - outwards he was as healthy as - but inside he was a mess. He had the bronch with a CT scan as well, which showed up some damage to his lungs and increased airway size. So he had his second tune up. His third tune up came because three weeks after the second one he was sick again. This tune up lasted 3 weeks. Also got fitted with a port as they are calling him chronic and say he will more than likely require quarterly tune ups. We will also be having annual CT broncs to keep a close eye on things - got to fly 5 hours away to have that done).

If you are concerned why not suggest a tune up - it doesn't hurt to ask.
 
S

Sheridan

New member
My eldest had his first and only tune up at around 5 because he couldn't shake a cold and his culture turned up psydomonis (sp?). He has not been sick in the almost 4 years since, not once. In terms of broncs Jordan was part of a study and had bronchs yearly and when antibiotics were not working, so I can't help you with that one.
<br />
<br />My youngest (17 months) has had three tune ups already. The first one because he was continually sick. The second one came about becuase he is a rapid breather and they wanted to do a bronch to see what was going on - outwards he was as healthy as - but inside he was a mess. He had the bronch with a CT scan as well, which showed up some damage to his lungs and increased airway size. So he had his second tune up. His third tune up came because three weeks after the second one he was sick again. This tune up lasted 3 weeks. Also got fitted with a port as they are calling him chronic and say he will more than likely require quarterly tune ups. We will also be having annual CT broncs to keep a close eye on things - got to fly 5 hours away to have that done).
<br />
<br />If you are concerned why not suggest a tune up - it doesn't hurt to ask.
 
J

jaimers

Super Moderator
i had my first tune up at 6. to be honest, i don't remember why but i'm going to assume it was a drop in FEV1. i've been culturing PA and some form of staff most of my life so i'm sure those contributed....

edited to add: i've never had a bronch.
 
J

jaimers

Super Moderator
i had my first tune up at 6. to be honest, i don't remember why but i'm going to assume it was a drop in FEV1. i've been culturing PA and some form of staff most of my life so i'm sure those contributed....

edited to add: i've never had a bronch.
 
J

jaimers

Super Moderator
i had my first tune up at 6. to be honest, i don't remember why but i'm going to assume it was a drop in FEV1. i've been culturing PA and some form of staff most of my life so i'm sure those contributed....

edited to add: i've never had a bronch.
 
J

jaimers

Super Moderator
i had my first tune up at 6. to be honest, i don't remember why but i'm going to assume it was a drop in FEV1. i've been culturing PA and some form of staff most of my life so i'm sure those contributed....

edited to add: i've never had a bronch.
 
J

jaimers

Super Moderator
i had my first tune up at 6. to be honest, i don't remember why but i'm going to assume it was a drop in FEV1. i've been culturing PA and some form of staff most of my life so i'm sure those contributed....
<br />
<br />edited to add: i've never had a bronch.
 
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