Question for Beccamom

Beccamom

New member
We do have an appointment with a Reumatologist and arthritis is on the new list of possible dx. We are continuing the chest PT because my DD asks us to. She did not ask for chest PT on Saturday and was not able to swim at all. She said she felt like the air she was breathing was not clean. By noon she asked for chest PT and then felt she could take deaper breathes, but she lacked energy all day. Sunday we were back on track with 2 times daily chest PT and by Monday she had some energy. By then only her knee pain was really stopping her. My pediatrician suggested the 3 days a week Azythromcin and I am debating on it. I will keep you all updated on our dx journey. I find the information so helpful about mucus clearnance and equipment that i will keep checking in to keep informed. Best wishes.
 

Beccamom

New member
<BR>We do have an appointment with a Reumatologist and arthritis is on the new list of possible dx. We are continuing the chest PT because my DD asks us to. She did not ask for chest PT on Saturday and was not able to swim at all. She said she felt like the air she was breathing was not clean. By noon she asked for chest PT and then felt she could take deaper breathes, but she lacked energy all day. Sunday we were back on track with 2 times daily chest PT and by Monday she had some energy. By then only her knee pain was really stopping her. My pediatrician suggested the 3 days a week Azythromcin and I am debating on it. I will keep you all updated on our dx journey. I find the information so helpful about mucus clearnance and equipment that i will keep checking in to keep informed. Best wishes.
 

Mistyjo

New member
I always felt like I needed to take a deep breath until I started advair. Has she tried anything like this? I have asthma.
My daughter is scheduled for the npd test next thurs the 9th at 1:00. I will let you know what happens. Keep posting on here. God bless!!
 

Mistyjo

New member
I always felt like I needed to take a deep breath until I started advair. Has she tried anything like this? I have asthma.
My daughter is scheduled for the npd test next thurs the 9th at 1:00. I will let you know what happens. Keep posting on here. God bless!!
 

Mistyjo

New member
I always felt like I needed to take a deep breath until I started advair. Has she tried anything like this? I have asthma.
<br />My daughter is scheduled for the npd test next thurs the 9th at 1:00. I will let you know what happens. Keep posting on here. God bless!!
 

Beccamom

New member
<P>Yes, she has been dx with asthma for the past 11 years.  She is currently taking Flovent 220, Singulair, and Xopenex.  We have tried Advair, Symbicort, Spiriva, Xopenex, Flovent, Albuterol and many combinations of these.  Her lung function doesn't change by increasing these.  The only one that really improved PFTs was Spiriva, but it caused really bad side affects and had to be discontinued.  The Spiriva was added when she was dx with COPD.  Then a 2nd opinion pulmonologist was opposed to a child with a COPD dx and that led us to try to figure out why she has an obstructive pulmonary disease.  She has no PFT improvement after albuterol or Xopenex regardless of 4 puffs with an inhailor or nebulized form.  On her last PFT she actually declined -2% after albuterol by nebulizer.  So that is why an obstructive pulmonary disease versus restrictive disease is being looked into.  I appreciate any advice, so thanks for responding.  </P>
<P> </P>
<P>Overall my DDs PFTs are highest closest to when she has been on antibiotics and the longer it has been since she has been on antibiotics the lower her PFTs regardless of how she is feeling.  My DD seems to just slowly go uphill after antibiotics and then slowly go back down until the next round of antibiotics.  No real explanation for that.  I did make an immunology appointment at the pediatricians suggestion.  Her immunoglobins are all in the normal range although low normal.  She has titers for all childhood immunizations etc. pneumonia trains from the Prevnar vaccine.  She just got two pneumonia vaccines this week, so I hope she gains immunity from them.  Maybe her being colonized with Staph explains the antibiotic trend, but I am just guessing.  I do hope the dr continues to culture her, so we know if the staph is the problem.    </P>
 

Beccamom

New member
<P>Yes, she has been dx with asthma for the past 11 years. She is currently taking Flovent 220, Singulair, and Xopenex. We have tried Advair, Symbicort, Spiriva, Xopenex, Flovent, Albuterol and many combinations of these. Her lung function doesn't change by increasing these. The only one that really improved PFTs was Spiriva, but it caused really bad side affects and had to be discontinued. The Spiriva was added when she was dx with COPD. Then a 2nd opinion pulmonologist was opposed to a child with a COPD dx and that led us to try to figure out why she has an obstructive pulmonary disease. She has no PFT improvement after albuterol or Xopenex regardless of 4 puffs with an inhailor or nebulized form. On her last PFT she actually declined -2% after albuterol by nebulizer. So that is why an obstructive pulmonary disease versus restrictive disease is being looked into. I appreciate any advice, so thanks for responding. </P>
<P></P>
<P>Overall my DDs PFTs are highest closest to when she has been on antibiotics and the longer it has been since she has been on antibiotics the lower her PFTs regardless of how she is feeling. My DD seems to just slowly go uphill after antibiotics and then slowly go back down until the next round of antibiotics. No real explanation for that. I did make an immunology appointment at the pediatricians suggestion. Her immunoglobins are all in the normal range although low normal. She has titers for all childhood immunizations etc. pneumonia trains from the Prevnar vaccine. She just got two pneumonia vaccines this week, so I hope she gains immunity from them. Maybe her being colonized with Staph explains the antibiotic trend, but I am just guessing. I do hope the dr continues to culture her, so we know ifthe staphis the problem. </P>
 

Beccamom

New member
<P><BR>Yes, she has been dx with asthma for the past 11 years. She is currently taking Flovent 220, Singulair, and Xopenex. We have tried Advair, Symbicort, Spiriva, Xopenex, Flovent, Albuterol and many combinations of these. Her lung function doesn't change by increasing these. The only one that really improved PFTs was Spiriva, but it caused really bad side affects and had to be discontinued. The Spiriva was added when she was dx with COPD. Then a 2nd opinion pulmonologist was opposed to a child with a COPD dx and that led us to try to figure out why she has an obstructive pulmonary disease. She has no PFT improvement after albuterol or Xopenex regardless of 4 puffs with an inhailor or nebulized form. On her last PFT she actually declined -2% after albuterol by nebulizer. So that is why an obstructive pulmonary disease versus restrictive disease is being looked into. I appreciate any advice, so thanks for responding. </P>
<P></P>
<P>Overall my DDs PFTs are highest closest to when she has been on antibiotics and the longer it has been since she has been on antibiotics the lower her PFTs regardless of how she is feeling. My DD seems to just slowly go uphill after antibiotics and then slowly go back down until the next round of antibiotics. No real explanation for that. I did make an immunology appointment at the pediatricians suggestion. Her immunoglobins are all in the normal range although low normal. She has titers for all childhood immunizations etc. pneumonia trains from the Prevnar vaccine. She just got two pneumonia vaccines this week, so I hope she gains immunity from them. Maybe her being colonized with Staph explains the antibiotic trend, but I am just guessing. I do hope the dr continues to culture her, so we know ifthe staphis the problem. </P>
 

Mistyjo

New member
Wow! poor baby! She sounds so much like my Mom. My Mom was dx with rheumatoid arthritis, chronic pnuemonia, pulmonary fibrosis, chronic constipation with colon polyps, anemia. It still sounds like CF to me. I hope she does get the dx of atypical cf so she gets the treatments that she needs. I'm really curious what the rheumatologist will have to say. My cousin's son is 9yr and he has RA.
Why can't a child be dx with copd? The question is what caused it? The fact that her pft's improve with antiobiotics is very telling. What about the pain in her knees, does anything improve it? I hope you get concrete answers soon!!!
 

Mistyjo

New member
Wow! poor baby! She sounds so much like my Mom. My Mom was dx with rheumatoid arthritis, chronic pnuemonia, pulmonary fibrosis, chronic constipation with colon polyps, anemia. It still sounds like CF to me. I hope she does get the dx of atypical cf so she gets the treatments that she needs. I'm really curious what the rheumatologist will have to say. My cousin's son is 9yr and he has RA.
Why can't a child be dx with copd? The question is what caused it? The fact that her pft's improve with antiobiotics is very telling. What about the pain in her knees, does anything improve it? I hope you get concrete answers soon!!!
 

Mistyjo

New member
Wow! poor baby! She sounds so much like my Mom. My Mom was dx with rheumatoid arthritis, chronic pnuemonia, pulmonary fibrosis, chronic constipation with colon polyps, anemia. It still sounds like CF to me. I hope she does get the dx of atypical cf so she gets the treatments that she needs. I'm really curious what the rheumatologist will have to say. My cousin's son is 9yr and he has RA.
<br />Why can't a child be dx with copd? The question is what caused it? The fact that her pft's improve with antiobiotics is very telling. What about the pain in her knees, does anything improve it? I hope you get concrete answers soon!!!
 

Beccamom

New member
I know so many of you are also seeking a dx, so I just wanted to update you. My daughter is now diagnosed with Alpha-1 Antitripsin deficiency. It may explain her being tired and is even related to arthritis, so I am glad we see a reumatologist soon. As for the lungs it typically does not affect the lungs until an older age and then it can cause Emphysema. I did find a few research articles regarding recent information about alpha 1 affecting the lungs in children. I guess my DD is borderline for a bunch of dx and altogether they cause a problem. I will keep you all updated in hopes that it helps your children as well. Thanks for all of the advice.
 

Beccamom

New member
I know so many of you are also seeking a dx, so I just wanted to update you. My daughter is now diagnosed with Alpha-1 Antitripsin deficiency. It may explain her being tired and is even related to arthritis, so I am glad we see a reumatologist soon. As for the lungs it typically does not affect the lungs until an older age and then it can cause Emphysema. I did find a few research articles regarding recent information about alpha 1 affecting the lungs in children. I guess my DD is borderline for a bunch of dx and altogether they cause a problem. I will keep you all updated in hopes that it helps your children as well. Thanks for all of the advice.
 

Beccamom

New member
I know so many of you are also seeking a dx, so I just wanted to update you. My daughter is now diagnosed with Alpha-1 Antitripsin deficiency. It may explain her being tired and is even related to arthritis, so I am glad we see a reumatologist soon. As for the lungs it typically does not affect the lungs until an older age and then it can cause Emphysema. I did find a few research articles regarding recent information about alpha 1 affecting the lungs in children. I guess my DD is borderline for a bunch of dx and altogether they cause a problem. I will keep you all updated in hopes that it helps your children as well. Thanks for all of the advice.
 

Mistyjo

New member
Thank you for the update. I'm glad you finally have a diagnosis maybe now she can get the treatment she needs.
 

Mistyjo

New member
Thank you for the update. I'm glad you finally have a diagnosis maybe now she can get the treatment she needs.
 

Mistyjo

New member
Thank you for the update. I'm glad you finally have a diagnosis maybe now she can get the treatment she needs.
 
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