Chest physical therapy works: questions any diagnosis other than CF

[Beccamom]

<P>My daughter is 11 her decreased FEV1 low 58% December and high 88% April led us to CF testing. She is a CF carrier who had 2 NPD tests.  My DD went to immunology and 11 vials of blood later we are waiting for results.  Meanwhile, I did talk to the pulmonogist directly who ruled out CF, and didn't seem to think chest PT should be helping my DD.  Well we skipped a morning and she coughed all day.  Swimming increased her cough, but she coughed even out of the pool.  She asked for Chest PT that night and so we continued 2 times daily for a week.  The next Saturday she did not request chest PT, so we skipped it.  She coughed all day at my in-laws and then took a shower and her cough was so strong in the upstairs shower relatives downstairs kept asking me if she was OK.  I guess I have gotten so used to her coughing in the shower that I didn't think it was a big deal.  Well I am not sure what to think now.  It seemed like after doing chest PT right from the hopsital of IV antibiotics it worked so well.  My daughter coughed up mucus during it and then little to none during the day.  We skipped to chest PT sessions and her cough is really mucus/junky again and periodically throughout the day, and really bad in the shower at night and when she swims.</P>
<P> </P>
<P>For a week she was diagnosed with CF and treated for it with IV antibiotics and chest PT.  Since then she had a relatively healthy month and her diagnosis was overturned by a 2nd NPD test and now my inconsistency with Chest PT brough back her cough.  I am so frustrated.  I just want my DD to be healthy.</P>
<P> </P>
<P>Do I take her the pediatrician?  Anyone have another suggestion of a diagnosis other than CF that explains my DD?  </P>

 

[Beccamom]

<P>My daughter is 11 her decreased FEV1 low 58% December and high 88% April led us to CF testing.She is a CF carrier who had 2 NPD tests. My DD went to immunology and 11 vials of blood later we are waiting for results. Meanwhile, I did talk to the pulmonogist directly who ruled out CF, and didn't seem to think chest PT should be helping my DD. Well we skipped a morning and she coughed all day. Swimming increased her cough, but she coughed even out of the pool. She asked for Chest PT that night and so we continued 2 times daily for a week. The next Saturday she did not request chest PT, so we skipped it. She coughed all day at my in-laws and then took a shower and her cough was so strong in the upstairs shower relatives downstairs kept asking me if she was OK. I guess I have gotten so used to her coughing in the shower that I didn't think it was a big deal. Well I am not sure what to think now. It seemed like after doing chest PT right from the hopsital of IV antibiotics it worked so well. My daughter coughed up mucus during it and then little to none during the day. We skipped to chest PT sessions and her cough is really mucus/junky again and periodically throughout the day, and really bad in the shower at night and when she swims.</P>
<P></P>
<P>For a week she was diagnosed with CF and treated for it with IV antibiotics and chest PT. Since then she had a relatively healthy month and her diagnosis was overturned by a 2nd NPD test and now my inconsistency with Chest PT brough back her cough. I am so frustrated. I just want my DD to be healthy.</P>
<P></P>
<P>Do I take her the pediatrician? Anyone have another suggestion of a diagnosis other than CF that explains my DD? </P>

 

[Beccamom]

<P><BR>My daughter is 11 her decreased FEV1 low 58% December and high 88% April led us to CF testing.She is a CF carrier who had 2 NPD tests. My DD went to immunology and 11 vials of blood later we are waiting for results. Meanwhile, I did talk to the pulmonogist directly who ruled out CF, and didn't seem to think chest PT should be helping my DD. Well we skipped a morning and she coughed all day. Swimming increased her cough, but she coughed even out of the pool. She asked for Chest PT that night and so we continued 2 times daily for a week. The next Saturday she did not request chest PT, so we skipped it. She coughed all day at my in-laws and then took a shower and her cough was so strong in the upstairs shower relatives downstairs kept asking me if she was OK. I guess I have gotten so used to her coughing in the shower that I didn't think it was a big deal. Well I am not sure what to think now. It seemed like after doing chest PT right from the hopsital of IV antibiotics it worked so well. My daughter coughed up mucus during it and then little to none during the day. We skipped to chest PT sessions and her cough is really mucus/junky again and periodically throughout the day, and really bad in the shower at night and when she swims.</P>
<P></P>
<P>For a week she was diagnosed with CF and treated for it with IV antibiotics and chest PT. Since then she had a relatively healthy month and her diagnosis was overturned by a 2nd NPD test and now my inconsistency with Chest PT brough back her cough. I am so frustrated. I just want my DD to be healthy.</P>
<P></P>
<P>Do I take her the pediatrician? Anyone have another suggestion of a diagnosis other than CF that explains my DD? </P>

 

[2005CFmom]

It breaks my heart to hear what your dear daughter is going through. I think you have a strong case for CF, but if not CF she definitely has something going on that needs to be diagnosed.

CF is not the only diagnoses that benefits from chest PT, so if it helps her, continue doing it while you seek out the diagnosis. In fact, her decreased lung function indicates she likely already has lung damage. A damaged lung is not going to clear out mucus as easily as a "normal" healthy lung.

My husband has bronchiectasis (the Drs don't know what caused it). But basically portions of his lungs "balloon" out, causing pockets where mucus can accumulate. He is on many of the same inhaled medications as my daughter with CF, AND he does chest PT 2 times a day via the vest to help clear his lungs.

So, yes pursue a diagnosis...but you KNOW she has something going on with her lungs and chest PT can be of help to people with various lung conditions.

 

[2005CFmom]

It breaks my heart to hear what your dear daughter is going through. I think you have a strong case for CF, but if not CF she definitely has something going on that needs to be diagnosed.

CF is not the only diagnoses that benefits from chest PT, so if it helps her, continue doing it while you seek out the diagnosis. In fact, her decreased lung function indicates she likely already has lung damage. A damaged lung is not going to clear out mucus as easily as a "normal" healthy lung.

My husband has bronchiectasis (the Drs don't know what caused it). But basically portions of his lungs "balloon" out, causing pockets where mucus can accumulate. He is on many of the same inhaled medications as my daughter with CF, AND he does chest PT 2 times a day via the vest to help clear his lungs.

So, yes pursue a diagnosis...but you KNOW she has something going on with her lungs and chest PT can be of help to people with various lung conditions.

 

[2005CFmom]

It breaks my heart to hear what your dear daughter is going through. I think you have a strong case for CF, but if not CF she definitely has something going on that needs to be diagnosed.
<br />
<br />CF is not the only diagnoses that benefits from chest PT, so if it helps her, continue doing it while you seek out the diagnosis. In fact, her decreased lung function indicates she likely already has lung damage. A damaged lung is not going to clear out mucus as easily as a "normal" healthy lung.
<br />
<br />My husband has bronchiectasis (the Drs don't know what caused it). But basically portions of his lungs "balloon" out, causing pockets where mucus can accumulate. He is on many of the same inhaled medications as my daughter with CF, AND he does chest PT 2 times a day via the vest to help clear his lungs.
<br />
<br />So, yes pursue a diagnosis...but you KNOW she has something going on with her lungs and chest PT can be of help to people with various lung conditions.