Could it be CF?

[LadyPenelope72]

Hi everyone,
I first wanted to say thanks to all of you who are on here sharing your stories and helping others.

I wanted to ask for your thoughts. My daughter is 6 years old and has what have been described as "reactive" airways. She got her first respiratory illness when she was 1. She was put on a nebulizer for wheezing. When she was 2 she had another illness where they used a nebulizer. At 3 she was diagnosed with bacterial pneumonia with an x-ray. She was given albuterol and antibiotics. At 4 she had bacterial pneumonia again (x-ray diagnosis) and then again at 5. Now 6 months later she has walking pneumonia. Between these bouts of pneumonia she has had many colds that have gone to her lungs. She has not needed albuterol but has coughed a lot.

She is normal sized (if not a little big) and has no bowel or mal-absorption issues. She is perfectly healthy in between these lung problems. She has never had a sinus infection, uti, strep throat etc. She has only had a couple of ear infections. Her doctor ordered the sweat chloride test and it came back negative (I am sorry I don't have the numbers). She was sent to a pulmonologist and he said her lungs looked normal on the x-rays. He said he thinks she just has reactive airways and that some kids are just very susceptible to lung infections.

I was wondering if you would get the full panel genetic test. I am obviously very worried but am I over-reacting? Should I ask for the test?

Any responses would be greatly appreciated.

Thanks,
LadyPenelope

 

[LadyPenelope72]

Hi everyone,
I first wanted to say thanks to all of you who are on here sharing your stories and helping others.

I wanted to ask for your thoughts. My daughter is 6 years old and has what have been described as "reactive" airways. She got her first respiratory illness when she was 1. She was put on a nebulizer for wheezing. When she was 2 she had another illness where they used a nebulizer. At 3 she was diagnosed with bacterial pneumonia with an x-ray. She was given albuterol and antibiotics. At 4 she had bacterial pneumonia again (x-ray diagnosis) and then again at 5. Now 6 months later she has walking pneumonia. Between these bouts of pneumonia she has had many colds that have gone to her lungs. She has not needed albuterol but has coughed a lot.

She is normal sized (if not a little big) and has no bowel or mal-absorption issues. She is perfectly healthy in between these lung problems. She has never had a sinus infection, uti, strep throat etc. She has only had a couple of ear infections. Her doctor ordered the sweat chloride test and it came back negative (I am sorry I don't have the numbers). She was sent to a pulmonologist and he said her lungs looked normal on the x-rays. He said he thinks she just has reactive airways and that some kids are just very susceptible to lung infections.

I was wondering if you would get the full panel genetic test. I am obviously very worried but am I over-reacting? Should I ask for the test?

Any responses would be greatly appreciated.

Thanks,
LadyPenelope

 

[LadyPenelope72]

Hi everyone,
I first wanted to say thanks to all of you who are on here sharing your stories and helping others.

I wanted to ask for your thoughts. My daughter is 6 years old and has what have been described as "reactive" airways. She got her first respiratory illness when she was 1. She was put on a nebulizer for wheezing. When she was 2 she had another illness where they used a nebulizer. At 3 she was diagnosed with bacterial pneumonia with an x-ray. She was given albuterol and antibiotics. At 4 she had bacterial pneumonia again (x-ray diagnosis) and then again at 5. Now 6 months later she has walking pneumonia. Between these bouts of pneumonia she has had many colds that have gone to her lungs. She has not needed albuterol but has coughed a lot.

She is normal sized (if not a little big) and has no bowel or mal-absorption issues. She is perfectly healthy in between these lung problems. She has never had a sinus infection, uti, strep throat etc. She has only had a couple of ear infections. Her doctor ordered the sweat chloride test and it came back negative (I am sorry I don't have the numbers). She was sent to a pulmonologist and he said her lungs looked normal on the x-rays. He said he thinks she just has reactive airways and that some kids are just very susceptible to lung infections.

I was wondering if you would get the full panel genetic test. I am obviously very worried but am I over-reacting? Should I ask for the test?

Any responses would be greatly appreciated.

Thanks,
LadyPenelope

 

[LadyPenelope72]

Hi everyone,
I first wanted to say thanks to all of you who are on here sharing your stories and helping others.

I wanted to ask for your thoughts. My daughter is 6 years old and has what have been described as "reactive" airways. She got her first respiratory illness when she was 1. She was put on a nebulizer for wheezing. When she was 2 she had another illness where they used a nebulizer. At 3 she was diagnosed with bacterial pneumonia with an x-ray. She was given albuterol and antibiotics. At 4 she had bacterial pneumonia again (x-ray diagnosis) and then again at 5. Now 6 months later she has walking pneumonia. Between these bouts of pneumonia she has had many colds that have gone to her lungs. She has not needed albuterol but has coughed a lot.

She is normal sized (if not a little big) and has no bowel or mal-absorption issues. She is perfectly healthy in between these lung problems. She has never had a sinus infection, uti, strep throat etc. She has only had a couple of ear infections. Her doctor ordered the sweat chloride test and it came back negative (I am sorry I don't have the numbers). She was sent to a pulmonologist and he said her lungs looked normal on the x-rays. He said he thinks she just has reactive airways and that some kids are just very susceptible to lung infections.

I was wondering if you would get the full panel genetic test. I am obviously very worried but am I over-reacting? Should I ask for the test?

Any responses would be greatly appreciated.

Thanks,
LadyPenelope

 

[LadyPenelope72]

Hi everyone,
<br />I first wanted to say thanks to all of you who are on here sharing your stories and helping others.
<br />
<br />I wanted to ask for your thoughts. My daughter is 6 years old and has what have been described as "reactive" airways. She got her first respiratory illness when she was 1. She was put on a nebulizer for wheezing. When she was 2 she had another illness where they used a nebulizer. At 3 she was diagnosed with bacterial pneumonia with an x-ray. She was given albuterol and antibiotics. At 4 she had bacterial pneumonia again (x-ray diagnosis) and then again at 5. Now 6 months later she has walking pneumonia. Between these bouts of pneumonia she has had many colds that have gone to her lungs. She has not needed albuterol but has coughed a lot.
<br />
<br />She is normal sized (if not a little big) and has no bowel or mal-absorption issues. She is perfectly healthy in between these lung problems. She has never had a sinus infection, uti, strep throat etc. She has only had a couple of ear infections. Her doctor ordered the sweat chloride test and it came back negative (I am sorry I don't have the numbers). She was sent to a pulmonologist and he said her lungs looked normal on the x-rays. He said he thinks she just has reactive airways and that some kids are just very susceptible to lung infections.
<br />
<br />I was wondering if you would get the full panel genetic test. I am obviously very worried but am I over-reacting? Should I ask for the test?
<br />
<br />Any responses would be greatly appreciated.
<br />
<br />Thanks,
<br />LadyPenelope

 

[Mommafirst]

I don't know the answer to this. I guess I'd start by making sure the sweat test was done at an accredited CF center (go to CFF.org). It is possible that your doctor is right, but it is also possible your doctor is wrong. I think I'd feel better if I were you, if you could rule it out definitively and the only way to do that is to have genetic testing done.

Sorry I can't tell you more. I would think that a kid her age with so many cases of pneumonia would be concerning. Just know that not all CF kids have digestive issues or weight gain problems, and lots of CF folks don't develop lung function decline until they are older than your daughter is now.

 

[Mommafirst]

I don't know the answer to this. I guess I'd start by making sure the sweat test was done at an accredited CF center (go to CFF.org). It is possible that your doctor is right, but it is also possible your doctor is wrong. I think I'd feel better if I were you, if you could rule it out definitively and the only way to do that is to have genetic testing done.

Sorry I can't tell you more. I would think that a kid her age with so many cases of pneumonia would be concerning. Just know that not all CF kids have digestive issues or weight gain problems, and lots of CF folks don't develop lung function decline until they are older than your daughter is now.

 

[Mommafirst]

I don't know the answer to this. I guess I'd start by making sure the sweat test was done at an accredited CF center (go to CFF.org). It is possible that your doctor is right, but it is also possible your doctor is wrong. I think I'd feel better if I were you, if you could rule it out definitively and the only way to do that is to have genetic testing done.

Sorry I can't tell you more. I would think that a kid her age with so many cases of pneumonia would be concerning. Just know that not all CF kids have digestive issues or weight gain problems, and lots of CF folks don't develop lung function decline until they are older than your daughter is now.

 

[Mommafirst]

I don't know the answer to this. I guess I'd start by making sure the sweat test was done at an accredited CF center (go to CFF.org). It is possible that your doctor is right, but it is also possible your doctor is wrong. I think I'd feel better if I were you, if you could rule it out definitively and the only way to do that is to have genetic testing done.

Sorry I can't tell you more. I would think that a kid her age with so many cases of pneumonia would be concerning. Just know that not all CF kids have digestive issues or weight gain problems, and lots of CF folks don't develop lung function decline until they are older than your daughter is now.

 

[Mommafirst]

I don't know the answer to this. I guess I'd start by making sure the sweat test was done at an accredited CF center (go to CFF.org). It is possible that your doctor is right, but it is also possible your doctor is wrong. I think I'd feel better if I were you, if you could rule it out definitively and the only way to do that is to have genetic testing done.
<br />
<br />Sorry I can't tell you more. I would think that a kid her age with so many cases of pneumonia would be concerning. Just know that not all CF kids have digestive issues or weight gain problems, and lots of CF folks don't develop lung function decline until they are older than your daughter is now.

 

[JazzysMom]

Another ?? I have is when you say "bacterial pneumonia" do you know WHAT bacteria? CFers are prone to certain ones & that would be a red flag if she had cultured one of them, but not being a CFer they probably didnt do a sputum culture.

The rule of thumb around here is if in doubt, check it out. You are better off persuing it & finding out its not CF then to wait & damage be done. It could just be asmtha/reactive airways. That will do it, but its also possible she hasnt shown other signs yet.

Going to an accredited CF Center for the sweat, genetic or consult is very imporant.

Good Luck & Let us know what happens!

 

[JazzysMom]

Another ?? I have is when you say "bacterial pneumonia" do you know WHAT bacteria? CFers are prone to certain ones & that would be a red flag if she had cultured one of them, but not being a CFer they probably didnt do a sputum culture.

The rule of thumb around here is if in doubt, check it out. You are better off persuing it & finding out its not CF then to wait & damage be done. It could just be asmtha/reactive airways. That will do it, but its also possible she hasnt shown other signs yet.

Going to an accredited CF Center for the sweat, genetic or consult is very imporant.

Good Luck & Let us know what happens!

 

[JazzysMom]

Another ?? I have is when you say "bacterial pneumonia" do you know WHAT bacteria? CFers are prone to certain ones & that would be a red flag if she had cultured one of them, but not being a CFer they probably didnt do a sputum culture.

The rule of thumb around here is if in doubt, check it out. You are better off persuing it & finding out its not CF then to wait & damage be done. It could just be asmtha/reactive airways. That will do it, but its also possible she hasnt shown other signs yet.

Going to an accredited CF Center for the sweat, genetic or consult is very imporant.

Good Luck & Let us know what happens!

 

[JazzysMom]

Another ?? I have is when you say "bacterial pneumonia" do you know WHAT bacteria? CFers are prone to certain ones & that would be a red flag if she had cultured one of them, but not being a CFer they probably didnt do a sputum culture.

The rule of thumb around here is if in doubt, check it out. You are better off persuing it & finding out its not CF then to wait & damage be done. It could just be asmtha/reactive airways. That will do it, but its also possible she hasnt shown other signs yet.

Going to an accredited CF Center for the sweat, genetic or consult is very imporant.

Good Luck & Let us know what happens!

 

[JazzysMom]

Another ?? I have is when you say "bacterial pneumonia" do you know WHAT bacteria? CFers are prone to certain ones & that would be a red flag if she had cultured one of them, but not being a CFer they probably didnt do a sputum culture.
<br />
<br />The rule of thumb around here is if in doubt, check it out. You are better off persuing it & finding out its not CF then to wait & damage be done. It could just be asmtha/reactive airways. That will do it, but its also possible she hasnt shown other signs yet.
<br />
<br />Going to an accredited CF Center for the sweat, genetic or consult is very imporant.
<br />
<br />Good Luck & Let us know what happens!

 

[NoExcuses]

I would encourage you to get a Full Panel Ambry Amplified test as sweat tests give false negatives. THere are plenty of CF people who passed sweat tests.... so the test isn't always accurate. The genetic test is accurate more often than sweat tests are. Best of luck.

 

[NoExcuses]

I would encourage you to get a Full Panel Ambry Amplified test as sweat tests give false negatives. THere are plenty of CF people who passed sweat tests.... so the test isn't always accurate. The genetic test is accurate more often than sweat tests are. Best of luck.

 

[NoExcuses]

I would encourage you to get a Full Panel Ambry Amplified test as sweat tests give false negatives. THere are plenty of CF people who passed sweat tests.... so the test isn't always accurate. The genetic test is accurate more often than sweat tests are. Best of luck.

 

[NoExcuses]

I would encourage you to get a Full Panel Ambry Amplified test as sweat tests give false negatives. THere are plenty of CF people who passed sweat tests.... so the test isn't always accurate. The genetic test is accurate more often than sweat tests are. Best of luck.

 

[NoExcuses]

I would encourage you to get a Full Panel Ambry Amplified test as sweat tests give false negatives. THere are plenty of CF people who passed sweat tests.... so the test isn't always accurate. The genetic test is accurate more often than sweat tests are. Best of luck.