Pediatrician convinced CF returning to pulmonologist next week

[Beccamom]

<P>Saw the pediatrician yesterday becaue my daughters productive cough is back.  She only had 2 week of no cough in the past 10 months.  </P>
<P> </P>
<P>My DD has had a chronic cough for most of the past 10 months.  After her first NPD test she was tentatively diagnosed with CF, but then was hospitalized with the flu a few days later.  In the hospital she began IV antibiotics (thinking her Staph a lung colonization was the problem), then they were stopped when they discovered she had influenza B.  We began chest PT at this time.  By two weeks out of the hospital her cough of the previous 9 months had stopped.  She could still feel like she coughed up something during chest PT 2 times daily.  So I began to slowly decrease and take her off one medicine at a time.  She is off reflux medicine and her cough did not return.  We decreased her "asthma" meds and the cough did not return. </P>
<P> </P>
<P> So the pulmonologist calls me back and we discuss that she is doing well.  He then tells me he thinks the chest PT working is completely in my DDs head that it started in the hospital and then she got better, so she thinks it works. So when my DD didn't ask for chest PT I didn't remind her and we skipped one morning and her cough came back that day and so we started again that night at my DDs request and she again had no cough.  So the next Saturday the same story my DD did not requst chest PT so we skipped it and then we did just 1 time daily Monday and Tuesday and by Wednesday I took her to the pediatrician because the ful,l all day cough was back.  He suggested resuming the chest PT and taking Mucinix.  I decided to try one at a time and the consisted chest PT in one day decreased the chough to very intermittent.</P>
<P> </P>
<P>Does anyone have experience with NPD and 1 test showng CF and 1 not showing CF.  My DDs results on one of the CF numbers was 11% change with a criteria of 10% or less being consistent with CF.  On her first test she had a 3% change.  The pediatrician thinks a tye breaker 33rd NPD makes sense since that is what would be done with the arm test.  My Dd has G542X mutation 7T and 9T variants and 2 polymorphisms.  What criteria have been used for people with the Atypical CF diagnosis?</P>

 

[Beccamom]

<P>Saw the pediatrician yesterday becaue my daughters productive cough is back. She only had 2 week of no cough in the past 10 months. </P>
<P></P>
<P>My DD has had a chronic cough for most of the past 10 months. After her first NPD test she was tentatively diagnosed with CF, but then was hospitalized with the flu a few days later. In the hospital she began IV antibiotics (thinking her Staph a lung colonization was the problem), then they were stopped when they discovered she had influenza B. We began chest PT at this time. By two weeks out of the hospital her cough of the previous 9 months had stopped. She could still feel like she coughed up something during chest PT 2 times daily. So I began to slowly decrease and take her off one medicine at a time. She is off reflux medicine and her cough did not return. We decreased her "asthma" meds and the cough did not return.</P>
<P></P>
<P>So the pulmonologist calls me back and we discuss that she is doing well. He then tells me he thinks the chest PT working is completely in my DDs head that it started in the hospital and then she got better, so she thinks it works. So when my DD didn't ask for chest PT I didn't remind her and we skipped one morning and her cough came back that day and so we started again that night at my DDs request and she again had no cough. So the next Saturday the same story my DD did not requst chest PT so we skipped it and then we did just 1 time daily Monday and Tuesday and by Wednesday I took her to the pediatrician because the ful,l all day cough was back. He suggested resuming the chest PT and taking Mucinix. I decided to try one at a time and the consisted chest PT in one day decreased the chough to very intermittent.</P>
<P></P>
<P>Does anyone have experience with NPD and 1 test showng CF and 1 not showing CF. My DDs results on one of the CF numbers was 11% change with a criteria of 10% or less being consistent with CF. On her first test she had a 3% change. The pediatrician thinks a tye breaker 33rd NPD makes sense since that is what would be done with the arm test. My Dd has G542X mutation 7T and 9T variants and 2 polymorphisms. What criteria have been used for people with the Atypical CF diagnosis?</P>

 

[Beccamom]

<P><BR>Saw the pediatrician yesterday becaue my daughters productive cough is back. She only had 2 week of no cough in the past 10 months. </P>
<P></P>
<P>My DD has had a chronic cough for most of the past 10 months. After her first NPD test she was tentatively diagnosed with CF, but then was hospitalized with the flu a few days later. In the hospital she began IV antibiotics (thinking her Staph a lung colonization was the problem), then they were stopped when they discovered she had influenza B. We began chest PT at this time. By two weeks out of the hospital her cough of the previous 9 months had stopped. She could still feel like she coughed up something during chest PT 2 times daily. So I began to slowly decrease and take her off one medicine at a time. She is off reflux medicine and her cough did not return. We decreased her "asthma" meds and the cough did not return.</P>
<P></P>
<P>So the pulmonologist calls me back and we discuss that she is doing well. He then tells me he thinks the chest PT working is completely in my DDs head that it started in the hospital and then she got better, so she thinks it works. So when my DD didn't ask for chest PT I didn't remind her and we skipped one morning and her cough came back that day and so we started again that night at my DDs request and she again had no cough. So the next Saturday the same story my DD did not requst chest PT so we skipped it and then we did just 1 time daily Monday and Tuesday and by Wednesday I took her to the pediatrician because the ful,l all day cough was back. He suggested resuming the chest PT and taking Mucinix. I decided to try one at a time and the consisted chest PT in one day decreased the chough to very intermittent.</P>
<P></P>
<P>Does anyone have experience with NPD and 1 test showng CF and 1 not showing CF. My DDs results on one of the CF numbers was 11% change with a criteria of 10% or less being consistent with CF. On her first test she had a 3% change. The pediatrician thinks a tye breaker 33rd NPD makes sense since that is what would be done with the arm test. My Dd has G542X mutation 7T and 9T variants and 2 polymorphisms. What criteria have been used for people with the Atypical CF diagnosis?</P>

 

[amyr]

It sounds to me that she falls into the spectrum. You are why I am working so hard to raise awareness of the Atypical presentations of this disease. Don't give up your fight to get your daughter the treatments that she clearly needs.

 

[amyr]

It sounds to me that she falls into the spectrum. You are why I am working so hard to raise awareness of the Atypical presentations of this disease. Don't give up your fight to get your daughter the treatments that she clearly needs.

 

[amyr]

It sounds to me that she falls into the spectrum. You are why I am working so hard to raise awareness of the Atypical presentations of this disease. Don't give up your fight to get your daughter the treatments that she clearly needs.

 

[Mistyjo]

Jasey had her npd and it was terrible. She couldn't finish it so we only got thru the first stage which is base line. Her base line for right side was -30 and left was -22. Didn't really find anything out from test. the cf specialist said b/c of the -30 he wanted to repeat it but then decided to test her bowel tissue instead since she just had a bowel resection done. we still haven't got the results of that yet. we are still in hosp this is day 4 post op and been in for 5 days now. will let you know when i find out something.

 

[Mistyjo]

Jasey had her npd and it was terrible. She couldn't finish it so we only got thru the first stage which is base line. Her base line for right side was -30 and left was -22. Didn't really find anything out from test. the cf specialist said b/c of the -30 he wanted to repeat it but then decided to test her bowel tissue instead since she just had a bowel resection done. we still haven't got the results of that yet. we are still in hosp this is day 4 post op and been in for 5 days now. will let you know when i find out something.

 

[Mistyjo]

Jasey had her npd and it was terrible. She couldn't finish it so we only got thru the first stage which is base line. Her base line for right side was -30 and left was -22. Didn't really find anything out from test. the cf specialist said b/c of the -30 he wanted to repeat it but then decided to test her bowel tissue instead since she just had a bowel resection done. we still haven't got the results of that yet. we are still in hosp this is day 4 post op and been in for 5 days now. will let you know when i find out something.

 

[Beccamom]

<P>Poor little girl. I will keep her in my preyers for a pain free recovery.  Thank you for thinking of my DD.  Please let me know what you find out from the biopsy.  We are in the process of scheduling a bronchoscopy and endoscopy at the same time.  I wonder if they can do the test you are doing during the endoscopy or if it would have to be a colonoscopy.  I just want a treatment plan.  </P>
<P> </P>
<P>We were just thrown a new curve ball.  My daughter has had knee pain since Christmas which was coincentally when she had an ER run for a bad bronchitis.  She was a gymnast so we took her to orthopedics who figured she had an injury and sent her to Physical Therapy.  8 weeks of PT and her pain is not getting better.  Meanwhile, on the days she had PT she rates her pain better than on the days she does not have PT.  We just went to Reumatology and my DD was diagnosed with Autoimmune Enthesitis.  Basically it is like arthritis where you get inflamation between bones in the joints except she has inflamation between the tendons and bone in her knees, ankles, feet, and each toe and a few other places.  It is triggered by viral or bacterial infections.  From not on the prognosis is each time she gets an infection (including respiratory) we should expect this to happen again and she will need NASIDS.  Since we should expect her have pain in her joins after each infection and then it will take about 4 weeks of meds to decrease the inflamation and she gets sick at least monthly, the I guess she will pain in pain always.  The Reumatologist seemed at a loss of words when I made that comment.  She said she would E-mail the pulmonogist with this latest diagnosis.  </P>
<P> </P>
<P>Yet another reason to prevent and quickly cure all infections.  Which is diificult without a diagnosis to explain why she has such frequent infections.</P>
<P> </P>
<P> </P>

 

[Beccamom]

<P>Poor little girl. I will keep her in my preyers for a pain free recovery. Thank you for thinking of my DD. Please let me know what you find out from the biopsy. We are in the process of scheduling a bronchoscopy and endoscopy at the same time. I wonder if they can do the test you are doing during the endoscopy or if it would have to be a colonoscopy. I just want a treatment plan. </P>
<P></P>
<P>We were just thrown a new curve ball. My daughter has had knee pain since Christmas which was coincentally when she had an ER run for a bad bronchitis. She was a gymnast so we took her to orthopedics who figured she had an injury and sent her to Physical Therapy. 8 weeks of PT and her pain is not getting better. Meanwhile, on the days she had PT she rates her pain better than on the days she does not have PT. We just went to Reumatology and my DD was diagnosed with Autoimmune Enthesitis. Basically it is like arthritis where you get inflamation between bones in the joints except she has inflamation between the tendons and bone in her knees, ankles, feet, and each toe and a few other places. It is triggered by viral or bacterial infections. From not on the prognosis is each time she gets an infection (including respiratory) we should expect this to happen again and she will need NASIDS. Since we should expect her have pain in her joins after each infection and then it will take about 4 weeks of meds to decrease the inflamation and she gets sick at least monthly, the I guess she will pain in pain always. The Reumatologist seemed at a loss of words when I made that comment. She said she would E-mail the pulmonogist with this latest diagnosis. </P>
<P></P>
<P>Yet another reason to prevent and quickly cure all infections. Which is diificult without a diagnosis to explain why she has such frequent infections.</P>
<P></P>
<P></P>

 

[Beccamom]

<P><BR>Poor little girl. I will keep her in my preyers for a pain free recovery. Thank you for thinking of my DD. Please let me know what you find out from the biopsy. We are in the process of scheduling a bronchoscopy and endoscopy at the same time. I wonder if they can do the test you are doing during the endoscopy or if it would have to be a colonoscopy. I just want a treatment plan. </P>
<P></P>
<P>We were just thrown a new curve ball. My daughter has had knee pain since Christmas which was coincentally when she had an ER run for a bad bronchitis. She was a gymnast so we took her to orthopedics who figured she had an injury and sent her to Physical Therapy. 8 weeks of PT and her pain is not getting better. Meanwhile, on the days she had PT she rates her pain better than on the days she does not have PT. We just went to Reumatology and my DD was diagnosed with Autoimmune Enthesitis. Basically it is like arthritis where you get inflamation between bones in the joints except she has inflamation between the tendons and bone in her knees, ankles, feet, and each toe and a few other places. It is triggered by viral or bacterial infections. From not on the prognosis is each time she gets an infection (including respiratory) we should expect this to happen again and she will need NASIDS. Since we should expect her have pain in her joins after each infection and then it will take about 4 weeks of meds to decrease the inflamation and she gets sick at least monthly, the I guess she will pain in pain always. The Reumatologist seemed at a loss of words when I made that comment. She said she would E-mail the pulmonogist with this latest diagnosis. </P>
<P></P>
<P>Yet another reason to prevent and quickly cure all infections. Which is diificult without a diagnosis to explain why she has such frequent infections.</P>
<P></P>
<P></P>

 

[Mistyjo]

If the same treatment for cf works for her, I don't understand why they don't do that even if they don't think she has it. Everyone does not fit into a nice box where everything is black and white! If I hadn't searched for a second opion for my daughter she would've ended up in serious trouble with her bowels. We were at another childrens hospital in bowel management program for a year and never found out what the problem was until we left and got a second opion.

 

[Mistyjo]

If the same treatment for cf works for her, I don't understand why they don't do that even if they don't think she has it. Everyone does not fit into a nice box where everything is black and white! If I hadn't searched for a second opion for my daughter she would've ended up in serious trouble with her bowels. We were at another childrens hospital in bowel management program for a year and never found out what the problem was until we left and got a second opion.

 

[Mistyjo]

If the same treatment for cf works for her, I don't understand why they don't do that even if they don't think she has it. Everyone does not fit into a nice box where everything is black and white! If I hadn't searched for a second opion for my daughter she would've ended up in serious trouble with her bowels. We were at another childrens hospital in bowel management program for a year and never found out what the problem was until we left and got a second opion.