Questions about probability

[LittleMansMom]

Hello, all. I've been reading back for a while now.

I have a one year old son. He has had a chronic daily cough and wheezing and crackles for about 9 months or so. Occasionally his lips turn blue and so he's being worked up for the cause of his congestion and wheezing. He has frequent colds and ear infections, but has never had pneumonia. Several weeks ago we started pulmicort in addition to the albuterol and he stopped coughing for the first time since he was a tiny baby. A new cold has started him coughing again, however.

He dropped about 45 percentiles in weight from 6 months to one year.

As a baby he had reflux which was treated with Zantac. The first thing the pulmonologist has decided to do is diagnose him with reflux as she believes his cough and congestion and cyanosis are a result of this.

I think the most likely explanation for all of this is probably reflux, but frankly I think there is at least some SMALL possibility that it is CF (he also has bizarre and mucousy stools.) We live in a state that has newborn screening and he presumably passed so this makes everything even less likely to be CF.

My fear is spending 6 months trying to diagnose him with reflux and finding out it was something else. I'm very bad with doctors as I have had several misdiagnoses of chronic problems of my own.... does anyone have advice or experience with getting doctors to go down two paths of diagnoses at once or airing concerns about an unlikely diagnosis without sounding like a crazy person overreacting to something the doctor probably sees all the time?

Thanks.

 

[LittleMansMom]

Hello, all. I've been reading back for a while now.

I have a one year old son. He has had a chronic daily cough and wheezing and crackles for about 9 months or so. Occasionally his lips turn blue and so he's being worked up for the cause of his congestion and wheezing. He has frequent colds and ear infections, but has never had pneumonia. Several weeks ago we started pulmicort in addition to the albuterol and he stopped coughing for the first time since he was a tiny baby. A new cold has started him coughing again, however.

He dropped about 45 percentiles in weight from 6 months to one year.

As a baby he had reflux which was treated with Zantac. The first thing the pulmonologist has decided to do is diagnose him with reflux as she believes his cough and congestion and cyanosis are a result of this.

I think the most likely explanation for all of this is probably reflux, but frankly I think there is at least some SMALL possibility that it is CF (he also has bizarre and mucousy stools.) We live in a state that has newborn screening and he presumably passed so this makes everything even less likely to be CF.

My fear is spending 6 months trying to diagnose him with reflux and finding out it was something else. I'm very bad with doctors as I have had several misdiagnoses of chronic problems of my own.... does anyone have advice or experience with getting doctors to go down two paths of diagnoses at once or airing concerns about an unlikely diagnosis without sounding like a crazy person overreacting to something the doctor probably sees all the time?

Thanks.

 

[LittleMansMom]

Hello, all. I've been reading back for a while now.

I have a one year old son. He has had a chronic daily cough and wheezing and crackles for about 9 months or so. Occasionally his lips turn blue and so he's being worked up for the cause of his congestion and wheezing. He has frequent colds and ear infections, but has never had pneumonia. Several weeks ago we started pulmicort in addition to the albuterol and he stopped coughing for the first time since he was a tiny baby. A new cold has started him coughing again, however.

He dropped about 45 percentiles in weight from 6 months to one year.

As a baby he had reflux which was treated with Zantac. The first thing the pulmonologist has decided to do is diagnose him with reflux as she believes his cough and congestion and cyanosis are a result of this.

I think the most likely explanation for all of this is probably reflux, but frankly I think there is at least some SMALL possibility that it is CF (he also has bizarre and mucousy stools.) We live in a state that has newborn screening and he presumably passed so this makes everything even less likely to be CF.

My fear is spending 6 months trying to diagnose him with reflux and finding out it was something else. I'm very bad with doctors as I have had several misdiagnoses of chronic problems of my own.... does anyone have advice or experience with getting doctors to go down two paths of diagnoses at once or airing concerns about an unlikely diagnosis without sounding like a crazy person overreacting to something the doctor probably sees all the time?

Thanks.

 

[LittleMansMom]

Hello, all. I've been reading back for a while now.

I have a one year old son. He has had a chronic daily cough and wheezing and crackles for about 9 months or so. Occasionally his lips turn blue and so he's being worked up for the cause of his congestion and wheezing. He has frequent colds and ear infections, but has never had pneumonia. Several weeks ago we started pulmicort in addition to the albuterol and he stopped coughing for the first time since he was a tiny baby. A new cold has started him coughing again, however.

He dropped about 45 percentiles in weight from 6 months to one year.

As a baby he had reflux which was treated with Zantac. The first thing the pulmonologist has decided to do is diagnose him with reflux as she believes his cough and congestion and cyanosis are a result of this.

I think the most likely explanation for all of this is probably reflux, but frankly I think there is at least some SMALL possibility that it is CF (he also has bizarre and mucousy stools.) We live in a state that has newborn screening and he presumably passed so this makes everything even less likely to be CF.

My fear is spending 6 months trying to diagnose him with reflux and finding out it was something else. I'm very bad with doctors as I have had several misdiagnoses of chronic problems of my own.... does anyone have advice or experience with getting doctors to go down two paths of diagnoses at once or airing concerns about an unlikely diagnosis without sounding like a crazy person overreacting to something the doctor probably sees all the time?

Thanks.

 

[LittleMansMom]

Hello, all. I've been reading back for a while now.

I have a one year old son. He has had a chronic daily cough and wheezing and crackles for about 9 months or so. Occasionally his lips turn blue and so he's being worked up for the cause of his congestion and wheezing. He has frequent colds and ear infections, but has never had pneumonia. Several weeks ago we started pulmicort in addition to the albuterol and he stopped coughing for the first time since he was a tiny baby. A new cold has started him coughing again, however.

He dropped about 45 percentiles in weight from 6 months to one year.

As a baby he had reflux which was treated with Zantac. The first thing the pulmonologist has decided to do is diagnose him with reflux as she believes his cough and congestion and cyanosis are a result of this.

I think the most likely explanation for all of this is probably reflux, but frankly I think there is at least some SMALL possibility that it is CF (he also has bizarre and mucousy stools.) We live in a state that has newborn screening and he presumably passed so this makes everything even less likely to be CF.

My fear is spending 6 months trying to diagnose him with reflux and finding out it was something else. I'm very bad with doctors as I have had several misdiagnoses of chronic problems of my own.... does anyone have advice or experience with getting doctors to go down two paths of diagnoses at once or airing concerns about an unlikely diagnosis without sounding like a crazy person overreacting to something the doctor probably sees all the time?

Thanks.

 

[Ratatosk]

I would push for genetic testing. Newborn screening isn't all inclusive. I believe it checks for certain genetic markers. IMO, contact your clinic to see if your child was tested as part of the newborn screening. And also, tell your doctor your concerns and that you want to test for CF to rule it out. Don't ask. Indicate you're concerned with him not getting any better, with the drop in weight, the respiratory issues...

On a side note, a lot of cfers, including my own child also had reflux as a baby.

 

[Ratatosk]

I would push for genetic testing. Newborn screening isn't all inclusive. I believe it checks for certain genetic markers. IMO, contact your clinic to see if your child was tested as part of the newborn screening. And also, tell your doctor your concerns and that you want to test for CF to rule it out. Don't ask. Indicate you're concerned with him not getting any better, with the drop in weight, the respiratory issues...

On a side note, a lot of cfers, including my own child also had reflux as a baby.

 

[Ratatosk]

I would push for genetic testing. Newborn screening isn't all inclusive. I believe it checks for certain genetic markers. IMO, contact your clinic to see if your child was tested as part of the newborn screening. And also, tell your doctor your concerns and that you want to test for CF to rule it out. Don't ask. Indicate you're concerned with him not getting any better, with the drop in weight, the respiratory issues...

On a side note, a lot of cfers, including my own child also had reflux as a baby.

 

[Ratatosk]

I would push for genetic testing. Newborn screening isn't all inclusive. I believe it checks for certain genetic markers. IMO, contact your clinic to see if your child was tested as part of the newborn screening. And also, tell your doctor your concerns and that you want to test for CF to rule it out. Don't ask. Indicate you're concerned with him not getting any better, with the drop in weight, the respiratory issues...

On a side note, a lot of cfers, including my own child also had reflux as a baby.

 

[Ratatosk]

I would push for genetic testing. Newborn screening isn't all inclusive. I believe it checks for certain genetic markers. IMO, contact your clinic to see if your child was tested as part of the newborn screening. And also, tell your doctor your concerns and that you want to test for CF to rule it out. Don't ask. Indicate you're concerned with him not getting any better, with the drop in weight, the respiratory issues...

On a side note, a lot of cfers, including my own child also had reflux as a baby.

 

[JORDYSMOM]

Hi LittleMansMom. I agree with Liza; get him tested. Let them think you are crazy or overreacting. You are just trying to help your child. It would seem logical to test for it, (even to just rule it out) since the mucousy stools and the rest of his symptoms (including the reflux) are typical of CF. You are your child's advocate, and if the doctor doesn't want to listen to you, find one who will. Let us know what happens.

Stacey

 

[JORDYSMOM]

Hi LittleMansMom. I agree with Liza; get him tested. Let them think you are crazy or overreacting. You are just trying to help your child. It would seem logical to test for it, (even to just rule it out) since the mucousy stools and the rest of his symptoms (including the reflux) are typical of CF. You are your child's advocate, and if the doctor doesn't want to listen to you, find one who will. Let us know what happens.

Stacey

 

[JORDYSMOM]

Hi LittleMansMom. I agree with Liza; get him tested. Let them think you are crazy or overreacting. You are just trying to help your child. It would seem logical to test for it, (even to just rule it out) since the mucousy stools and the rest of his symptoms (including the reflux) are typical of CF. You are your child's advocate, and if the doctor doesn't want to listen to you, find one who will. Let us know what happens.

Stacey

 

[JORDYSMOM]

Hi LittleMansMom. I agree with Liza; get him tested. Let them think you are crazy or overreacting. You are just trying to help your child. It would seem logical to test for it, (even to just rule it out) since the mucousy stools and the rest of his symptoms (including the reflux) are typical of CF. You are your child's advocate, and if the doctor doesn't want to listen to you, find one who will. Let us know what happens.

Stacey

 

[JORDYSMOM]

Hi LittleMansMom. I agree with Liza; get him tested. Let them think you are crazy or overreacting. You are just trying to help your child. It would seem logical to test for it, (even to just rule it out) since the mucousy stools and the rest of his symptoms (including the reflux) are typical of CF. You are your child's advocate, and if the doctor doesn't want to listen to you, find one who will. Let us know what happens.

Stacey

 

[Alyssa]

Just wanted to say pretty much the same thing as the other posters - yes he has reflux - that doesn't mean that he cannot also have CF. Many people here have both CF and reflux, along with CF and allergies, CF and diabetes etc.

He is showing some classic symptoms of CF and any doctor should be willing to pursue testing - you are not sounding crazy for asking. If your doctor does not agree to test, find another doctor. You might also tell him you want to pursue testing to "rule out" CF. If he refuses ask him to put that refusal in writing... I don't really think he will be comfortable doing that, and therefore will be motivated to order the testing.

It might be a good idea to look at CFF.org to find a certified CF clinic near you - see about getting in with a certified CF doctor - they have a lot more experience with testing than the average doc.

Most doctors will want to start with a sweat test - be sure to ask what the number is -- not just whether positive or negative. If clearly positive then genetic testing will follow. But many folks get a negative or borderline number - this can still mean a person has CF. In this case genetic testing is a must! So many people on this board are in the normal range - some down as low as the teen numbers - read my blog for more details about sweat test numbers.

You can also ask about fecal fat testing - this should show if he needs enzymes or not - this would also be an indicator of CF. Though not 100% since not all persons with CF are pancreatic insufficient - so again would help you confirm a positive diagnosis, but don't count on a negative to confirm he does not have CF.

Best of luck - please keep us posted.

 

[Alyssa]

Just wanted to say pretty much the same thing as the other posters - yes he has reflux - that doesn't mean that he cannot also have CF. Many people here have both CF and reflux, along with CF and allergies, CF and diabetes etc.

He is showing some classic symptoms of CF and any doctor should be willing to pursue testing - you are not sounding crazy for asking. If your doctor does not agree to test, find another doctor. You might also tell him you want to pursue testing to "rule out" CF. If he refuses ask him to put that refusal in writing... I don't really think he will be comfortable doing that, and therefore will be motivated to order the testing.

It might be a good idea to look at CFF.org to find a certified CF clinic near you - see about getting in with a certified CF doctor - they have a lot more experience with testing than the average doc.

Most doctors will want to start with a sweat test - be sure to ask what the number is -- not just whether positive or negative. If clearly positive then genetic testing will follow. But many folks get a negative or borderline number - this can still mean a person has CF. In this case genetic testing is a must! So many people on this board are in the normal range - some down as low as the teen numbers - read my blog for more details about sweat test numbers.

You can also ask about fecal fat testing - this should show if he needs enzymes or not - this would also be an indicator of CF. Though not 100% since not all persons with CF are pancreatic insufficient - so again would help you confirm a positive diagnosis, but don't count on a negative to confirm he does not have CF.

Best of luck - please keep us posted.

 

[Alyssa]

Just wanted to say pretty much the same thing as the other posters - yes he has reflux - that doesn't mean that he cannot also have CF. Many people here have both CF and reflux, along with CF and allergies, CF and diabetes etc.

He is showing some classic symptoms of CF and any doctor should be willing to pursue testing - you are not sounding crazy for asking. If your doctor does not agree to test, find another doctor. You might also tell him you want to pursue testing to "rule out" CF. If he refuses ask him to put that refusal in writing... I don't really think he will be comfortable doing that, and therefore will be motivated to order the testing.

It might be a good idea to look at CFF.org to find a certified CF clinic near you - see about getting in with a certified CF doctor - they have a lot more experience with testing than the average doc.

Most doctors will want to start with a sweat test - be sure to ask what the number is -- not just whether positive or negative. If clearly positive then genetic testing will follow. But many folks get a negative or borderline number - this can still mean a person has CF. In this case genetic testing is a must! So many people on this board are in the normal range - some down as low as the teen numbers - read my blog for more details about sweat test numbers.

You can also ask about fecal fat testing - this should show if he needs enzymes or not - this would also be an indicator of CF. Though not 100% since not all persons with CF are pancreatic insufficient - so again would help you confirm a positive diagnosis, but don't count on a negative to confirm he does not have CF.

Best of luck - please keep us posted.

 

[Alyssa]

Just wanted to say pretty much the same thing as the other posters - yes he has reflux - that doesn't mean that he cannot also have CF. Many people here have both CF and reflux, along with CF and allergies, CF and diabetes etc.

He is showing some classic symptoms of CF and any doctor should be willing to pursue testing - you are not sounding crazy for asking. If your doctor does not agree to test, find another doctor. You might also tell him you want to pursue testing to "rule out" CF. If he refuses ask him to put that refusal in writing... I don't really think he will be comfortable doing that, and therefore will be motivated to order the testing.

It might be a good idea to look at CFF.org to find a certified CF clinic near you - see about getting in with a certified CF doctor - they have a lot more experience with testing than the average doc.

Most doctors will want to start with a sweat test - be sure to ask what the number is -- not just whether positive or negative. If clearly positive then genetic testing will follow. But many folks get a negative or borderline number - this can still mean a person has CF. In this case genetic testing is a must! So many people on this board are in the normal range - some down as low as the teen numbers - read my blog for more details about sweat test numbers.

You can also ask about fecal fat testing - this should show if he needs enzymes or not - this would also be an indicator of CF. Though not 100% since not all persons with CF are pancreatic insufficient - so again would help you confirm a positive diagnosis, but don't count on a negative to confirm he does not have CF.

Best of luck - please keep us posted.

 

[Alyssa]

Just wanted to say pretty much the same thing as the other posters - yes he has reflux - that doesn't mean that he cannot also have CF. Many people here have both CF and reflux, along with CF and allergies, CF and diabetes etc.

He is showing some classic symptoms of CF and any doctor should be willing to pursue testing - you are not sounding crazy for asking. If your doctor does not agree to test, find another doctor. You might also tell him you want to pursue testing to "rule out" CF. If he refuses ask him to put that refusal in writing... I don't really think he will be comfortable doing that, and therefore will be motivated to order the testing.

It might be a good idea to look at CFF.org to find a certified CF clinic near you - see about getting in with a certified CF doctor - they have a lot more experience with testing than the average doc.

Most doctors will want to start with a sweat test - be sure to ask what the number is -- not just whether positive or negative. If clearly positive then genetic testing will follow. But many folks get a negative or borderline number - this can still mean a person has CF. In this case genetic testing is a must! So many people on this board are in the normal range - some down as low as the teen numbers - read my blog for more details about sweat test numbers.

You can also ask about fecal fat testing - this should show if he needs enzymes or not - this would also be an indicator of CF. Though not 100% since not all persons with CF are pancreatic insufficient - so again would help you confirm a positive diagnosis, but don't count on a negative to confirm he does not have CF.

Best of luck - please keep us posted.