worried mother

professormom

New member
Hi -

My 7.5 month old son owen was born healthy at 38 weeks. he was hospitalized with RSV at 12 days old. he handled it pretty well and was sent home with a nebulizer after 1 day. Since then, he has had 2 ear infections, FEW COLDS, a pretty much constant cough, and last weekend sounded really junky, so the doc ordered a steriod to go along with the bronchiodialator in the nebulizer. Up until now, we have used the nebulizer only a few times. These meds have helped a bit, but he still has a loose cough and a rattle sometimes. The allergist added singulair, which seems to be helping more. he has baasically been diagnosed with reactive airway disease - most likely will become asthma once this diagnosis can be made. During a follow-up visit with the pediatrician on Friday, he said he wanted Owen to go for a sweat test to rule out cystic fibrosis. I was floored. The doc said he didn't think Owen had it because he has none of the other symptoms (his weight and height have been consistently in the 50th%ile, his poop is normal).

I have been reading about all of the various presentations of CF in people. Is it common for an infant to have the respiratory symptoms of CF and none of the other symptoms? Based on your experience, how likely is it that my boy has CF? I am so worried about him. Oh, BTW, he doesn't taste salty at all.

Oh, also, our state routinely screens for CF in the newborn heel prick test. I realize there is about a 5% false negative rate, but Owen was not identified during the screening. I have no knowen history of CF in teh family, although my dad had 2 brothers die as young boys (in the 19teens in poor Irish immigrant slums of NYC) and we don't know the cause. My Husband was adopted, so we know very little about his family history.

Any insight/ stories would be appreciated.

Thanks,
Nora
 

professormom

New member
Hi -

My 7.5 month old son owen was born healthy at 38 weeks. he was hospitalized with RSV at 12 days old. he handled it pretty well and was sent home with a nebulizer after 1 day. Since then, he has had 2 ear infections, FEW COLDS, a pretty much constant cough, and last weekend sounded really junky, so the doc ordered a steriod to go along with the bronchiodialator in the nebulizer. Up until now, we have used the nebulizer only a few times. These meds have helped a bit, but he still has a loose cough and a rattle sometimes. The allergist added singulair, which seems to be helping more. he has baasically been diagnosed with reactive airway disease - most likely will become asthma once this diagnosis can be made. During a follow-up visit with the pediatrician on Friday, he said he wanted Owen to go for a sweat test to rule out cystic fibrosis. I was floored. The doc said he didn't think Owen had it because he has none of the other symptoms (his weight and height have been consistently in the 50th%ile, his poop is normal).

I have been reading about all of the various presentations of CF in people. Is it common for an infant to have the respiratory symptoms of CF and none of the other symptoms? Based on your experience, how likely is it that my boy has CF? I am so worried about him. Oh, BTW, he doesn't taste salty at all.

Oh, also, our state routinely screens for CF in the newborn heel prick test. I realize there is about a 5% false negative rate, but Owen was not identified during the screening. I have no knowen history of CF in teh family, although my dad had 2 brothers die as young boys (in the 19teens in poor Irish immigrant slums of NYC) and we don't know the cause. My Husband was adopted, so we know very little about his family history.

Any insight/ stories would be appreciated.

Thanks,
Nora
 

professormom

New member
Hi -

My 7.5 month old son owen was born healthy at 38 weeks. he was hospitalized with RSV at 12 days old. he handled it pretty well and was sent home with a nebulizer after 1 day. Since then, he has had 2 ear infections, FEW COLDS, a pretty much constant cough, and last weekend sounded really junky, so the doc ordered a steriod to go along with the bronchiodialator in the nebulizer. Up until now, we have used the nebulizer only a few times. These meds have helped a bit, but he still has a loose cough and a rattle sometimes. The allergist added singulair, which seems to be helping more. he has baasically been diagnosed with reactive airway disease - most likely will become asthma once this diagnosis can be made. During a follow-up visit with the pediatrician on Friday, he said he wanted Owen to go for a sweat test to rule out cystic fibrosis. I was floored. The doc said he didn't think Owen had it because he has none of the other symptoms (his weight and height have been consistently in the 50th%ile, his poop is normal).

I have been reading about all of the various presentations of CF in people. Is it common for an infant to have the respiratory symptoms of CF and none of the other symptoms? Based on your experience, how likely is it that my boy has CF? I am so worried about him. Oh, BTW, he doesn't taste salty at all.

Oh, also, our state routinely screens for CF in the newborn heel prick test. I realize there is about a 5% false negative rate, but Owen was not identified during the screening. I have no knowen history of CF in teh family, although my dad had 2 brothers die as young boys (in the 19teens in poor Irish immigrant slums of NYC) and we don't know the cause. My Husband was adopted, so we know very little about his family history.

Any insight/ stories would be appreciated.

Thanks,
Nora
 

professormom

New member
Hi -

My 7.5 month old son owen was born healthy at 38 weeks. he was hospitalized with RSV at 12 days old. he handled it pretty well and was sent home with a nebulizer after 1 day. Since then, he has had 2 ear infections, FEW COLDS, a pretty much constant cough, and last weekend sounded really junky, so the doc ordered a steriod to go along with the bronchiodialator in the nebulizer. Up until now, we have used the nebulizer only a few times. These meds have helped a bit, but he still has a loose cough and a rattle sometimes. The allergist added singulair, which seems to be helping more. he has baasically been diagnosed with reactive airway disease - most likely will become asthma once this diagnosis can be made. During a follow-up visit with the pediatrician on Friday, he said he wanted Owen to go for a sweat test to rule out cystic fibrosis. I was floored. The doc said he didn't think Owen had it because he has none of the other symptoms (his weight and height have been consistently in the 50th%ile, his poop is normal).

I have been reading about all of the various presentations of CF in people. Is it common for an infant to have the respiratory symptoms of CF and none of the other symptoms? Based on your experience, how likely is it that my boy has CF? I am so worried about him. Oh, BTW, he doesn't taste salty at all.

Oh, also, our state routinely screens for CF in the newborn heel prick test. I realize there is about a 5% false negative rate, but Owen was not identified during the screening. I have no knowen history of CF in teh family, although my dad had 2 brothers die as young boys (in the 19teens in poor Irish immigrant slums of NYC) and we don't know the cause. My Husband was adopted, so we know very little about his family history.

Any insight/ stories would be appreciated.

Thanks,
Nora
 

professormom

New member
Hi -

My 7.5 month old son owen was born healthy at 38 weeks. he was hospitalized with RSV at 12 days old. he handled it pretty well and was sent home with a nebulizer after 1 day. Since then, he has had 2 ear infections, FEW COLDS, a pretty much constant cough, and last weekend sounded really junky, so the doc ordered a steriod to go along with the bronchiodialator in the nebulizer. Up until now, we have used the nebulizer only a few times. These meds have helped a bit, but he still has a loose cough and a rattle sometimes. The allergist added singulair, which seems to be helping more. he has baasically been diagnosed with reactive airway disease - most likely will become asthma once this diagnosis can be made. During a follow-up visit with the pediatrician on Friday, he said he wanted Owen to go for a sweat test to rule out cystic fibrosis. I was floored. The doc said he didn't think Owen had it because he has none of the other symptoms (his weight and height have been consistently in the 50th%ile, his poop is normal).

I have been reading about all of the various presentations of CF in people. Is it common for an infant to have the respiratory symptoms of CF and none of the other symptoms? Based on your experience, how likely is it that my boy has CF? I am so worried about him. Oh, BTW, he doesn't taste salty at all.

Oh, also, our state routinely screens for CF in the newborn heel prick test. I realize there is about a 5% false negative rate, but Owen was not identified during the screening. I have no knowen history of CF in teh family, although my dad had 2 brothers die as young boys (in the 19teens in poor Irish immigrant slums of NYC) and we don't know the cause. My Husband was adopted, so we know very little about his family history.

Any insight/ stories would be appreciated.

Thanks,
Nora
 

professormom

New member
Hi -

My 7.5 month old son owen was born healthy at 38 weeks. he was hospitalized with RSV at 12 days old. he handled it pretty well and was sent home with a nebulizer after 1 day. Since then, he has had 2 ear infections, FEW COLDS, a pretty much constant cough, and last weekend sounded really junky, so the doc ordered a steriod to go along with the bronchiodialator in the nebulizer. Up until now, we have used the nebulizer only a few times. These meds have helped a bit, but he still has a loose cough and a rattle sometimes. The allergist added singulair, which seems to be helping more. he has baasically been diagnosed with reactive airway disease - most likely will become asthma once this diagnosis can be made. During a follow-up visit with the pediatrician on Friday, he said he wanted Owen to go for a sweat test to rule out cystic fibrosis. I was floored. The doc said he didn't think Owen had it because he has none of the other symptoms (his weight and height have been consistently in the 50th%ile, his poop is normal).

I have been reading about all of the various presentations of CF in people. Is it common for an infant to have the respiratory symptoms of CF and none of the other symptoms? Based on your experience, how likely is it that my boy has CF? I am so worried about him. Oh, BTW, he doesn't taste salty at all.

Oh, also, our state routinely screens for CF in the newborn heel prick test. I realize there is about a 5% false negative rate, but Owen was not identified during the screening. I have no knowen history of CF in teh family, although my dad had 2 brothers die as young boys (in the 19teens in poor Irish immigrant slums of NYC) and we don't know the cause. My Husband was adopted, so we know very little about his family history.

Any insight/ stories would be appreciated.

Thanks,
Nora
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>professormom</b></i>

Is it common for an infant to have the respiratory symptoms of CF and none of the other symptoms? </end quote></div>

CF presents itself in many different ways. Some people have only digestive issues and no lung involvement early on in life. And some have just lung issues and don't require digestive enzymes.

Everyone presents with CF differently.



<div class="FTQUOTE"><begin quote>Based on your experience, how likely is it that my boy has CF? </end quote></div>


Definately a possibility.

<div class="FTQUOTE"><begin quote> Oh, BTW, he doesn't taste salty at all. </end quote></div>

Many of us don't



<div class="FTQUOTE"><begin quote>Oh, also, our state routinely screens for CF in the newborn heel prick test. I realize there is about a 5% false negative rate, but Owen was not identified during the screening. </end quote></div>

Get an Ambry Amplified genetic test. Ask you doctor about it tomorrow (Monday). Go get the blood drawn and get it over with. No other test will give you as difinitive of an answer.

<div class="FTQUOTE"><begin quote> I have no knowen history of CF in teh family</end quote></div>


99% of CFers on this board don't have a history of CF in the family either. There are only 30,000 of us in the US, out of a population of 300 million. Chances of having someone else in the family with CF are very slim.


<div class="FTQUOTE"><begin quote>Any insight/ stories would be appreciated. </end quote></div>

Get the Ambry Amplified genetic test. There's no reason not to.

Good luck.
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>professormom</b></i>

Is it common for an infant to have the respiratory symptoms of CF and none of the other symptoms? </end quote></div>

CF presents itself in many different ways. Some people have only digestive issues and no lung involvement early on in life. And some have just lung issues and don't require digestive enzymes.

Everyone presents with CF differently.



<div class="FTQUOTE"><begin quote>Based on your experience, how likely is it that my boy has CF? </end quote></div>


Definately a possibility.

<div class="FTQUOTE"><begin quote> Oh, BTW, he doesn't taste salty at all. </end quote></div>

Many of us don't



<div class="FTQUOTE"><begin quote>Oh, also, our state routinely screens for CF in the newborn heel prick test. I realize there is about a 5% false negative rate, but Owen was not identified during the screening. </end quote></div>

Get an Ambry Amplified genetic test. Ask you doctor about it tomorrow (Monday). Go get the blood drawn and get it over with. No other test will give you as difinitive of an answer.

<div class="FTQUOTE"><begin quote> I have no knowen history of CF in teh family</end quote></div>


99% of CFers on this board don't have a history of CF in the family either. There are only 30,000 of us in the US, out of a population of 300 million. Chances of having someone else in the family with CF are very slim.


<div class="FTQUOTE"><begin quote>Any insight/ stories would be appreciated. </end quote></div>

Get the Ambry Amplified genetic test. There's no reason not to.

Good luck.
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>professormom</b></i>

Is it common for an infant to have the respiratory symptoms of CF and none of the other symptoms? </end quote></div>

CF presents itself in many different ways. Some people have only digestive issues and no lung involvement early on in life. And some have just lung issues and don't require digestive enzymes.

Everyone presents with CF differently.



<div class="FTQUOTE"><begin quote>Based on your experience, how likely is it that my boy has CF? </end quote></div>


Definately a possibility.

<div class="FTQUOTE"><begin quote> Oh, BTW, he doesn't taste salty at all. </end quote></div>

Many of us don't



<div class="FTQUOTE"><begin quote>Oh, also, our state routinely screens for CF in the newborn heel prick test. I realize there is about a 5% false negative rate, but Owen was not identified during the screening. </end quote></div>

Get an Ambry Amplified genetic test. Ask you doctor about it tomorrow (Monday). Go get the blood drawn and get it over with. No other test will give you as difinitive of an answer.

<div class="FTQUOTE"><begin quote> I have no knowen history of CF in teh family</end quote></div>


99% of CFers on this board don't have a history of CF in the family either. There are only 30,000 of us in the US, out of a population of 300 million. Chances of having someone else in the family with CF are very slim.


<div class="FTQUOTE"><begin quote>Any insight/ stories would be appreciated. </end quote></div>

Get the Ambry Amplified genetic test. There's no reason not to.

Good luck.
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>professormom</b></i>

Is it common for an infant to have the respiratory symptoms of CF and none of the other symptoms? </end quote></div>

CF presents itself in many different ways. Some people have only digestive issues and no lung involvement early on in life. And some have just lung issues and don't require digestive enzymes.

Everyone presents with CF differently.



<div class="FTQUOTE"><begin quote>Based on your experience, how likely is it that my boy has CF? </end quote></div>


Definately a possibility.

<div class="FTQUOTE"><begin quote> Oh, BTW, he doesn't taste salty at all. </end quote></div>

Many of us don't



<div class="FTQUOTE"><begin quote>Oh, also, our state routinely screens for CF in the newborn heel prick test. I realize there is about a 5% false negative rate, but Owen was not identified during the screening. </end quote></div>

Get an Ambry Amplified genetic test. Ask you doctor about it tomorrow (Monday). Go get the blood drawn and get it over with. No other test will give you as difinitive of an answer.

<div class="FTQUOTE"><begin quote> I have no knowen history of CF in teh family</end quote></div>


99% of CFers on this board don't have a history of CF in the family either. There are only 30,000 of us in the US, out of a population of 300 million. Chances of having someone else in the family with CF are very slim.


<div class="FTQUOTE"><begin quote>Any insight/ stories would be appreciated. </end quote></div>

Get the Ambry Amplified genetic test. There's no reason not to.

Good luck.
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>professormom</b></i>

Is it common for an infant to have the respiratory symptoms of CF and none of the other symptoms? </end quote>

CF presents itself in many different ways. Some people have only digestive issues and no lung involvement early on in life. And some have just lung issues and don't require digestive enzymes.

Everyone presents with CF differently.



<div class="FTQUOTE"><begin quote>Based on your experience, how likely is it that my boy has CF? </end quote>


Definately a possibility.

<div class="FTQUOTE"><begin quote> Oh, BTW, he doesn't taste salty at all. </end quote>

Many of us don't



<div class="FTQUOTE"><begin quote>Oh, also, our state routinely screens for CF in the newborn heel prick test. I realize there is about a 5% false negative rate, but Owen was not identified during the screening. </end quote>

Get an Ambry Amplified genetic test. Ask you doctor about it tomorrow (Monday). Go get the blood drawn and get it over with. No other test will give you as difinitive of an answer.

<div class="FTQUOTE"><begin quote> I have no knowen history of CF in teh family</end quote>


99% of CFers on this board don't have a history of CF in the family either. There are only 30,000 of us in the US, out of a population of 300 million. Chances of having someone else in the family with CF are very slim.


<div class="FTQUOTE"><begin quote>Any insight/ stories would be appreciated. </end quote>

Get the Ambry Amplified genetic test. There's no reason not to.

Good luck.
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>professormom</b></i>

Is it common for an infant to have the respiratory symptoms of CF and none of the other symptoms? </end quote>

CF presents itself in many different ways. Some people have only digestive issues and no lung involvement early on in life. And some have just lung issues and don't require digestive enzymes.

Everyone presents with CF differently.



<div class="FTQUOTE"><begin quote>Based on your experience, how likely is it that my boy has CF? </end quote>


Definately a possibility.

<div class="FTQUOTE"><begin quote> Oh, BTW, he doesn't taste salty at all. </end quote>

Many of us don't



<div class="FTQUOTE"><begin quote>Oh, also, our state routinely screens for CF in the newborn heel prick test. I realize there is about a 5% false negative rate, but Owen was not identified during the screening. </end quote>

Get an Ambry Amplified genetic test. Ask you doctor about it tomorrow (Monday). Go get the blood drawn and get it over with. No other test will give you as difinitive of an answer.

<div class="FTQUOTE"><begin quote> I have no knowen history of CF in teh family</end quote>


99% of CFers on this board don't have a history of CF in the family either. There are only 30,000 of us in the US, out of a population of 300 million. Chances of having someone else in the family with CF are very slim.


<div class="FTQUOTE"><begin quote>Any insight/ stories would be appreciated. </end quote>

Get the Ambry Amplified genetic test. There's no reason not to.

Good luck.
 

Jem

New member
When I was born I did not present with digestive issues. I was always in the high percentile for height and right in the middle for weight. My sweat test numbers were in the 30's. But right from the start I always had lung issues: chronic cough, colds, crackly chest, phelgm, allergies etc... Back in the olden days we did not have the genetic tests or the vast information about cf that are available today to help confirm cf earlier in life and get treatment started sooner to slow progression.

I think your son has an excellent doctor who wants to leave no stone unturned in finding the cause of Owen's health problems. Get the Ambry Amplified genetic test like sakasuka recommended and don't worry about the outcome until the results are presented to you. Best wishes and I will be keeping your little one in prayer.
 

Jem

New member
When I was born I did not present with digestive issues. I was always in the high percentile for height and right in the middle for weight. My sweat test numbers were in the 30's. But right from the start I always had lung issues: chronic cough, colds, crackly chest, phelgm, allergies etc... Back in the olden days we did not have the genetic tests or the vast information about cf that are available today to help confirm cf earlier in life and get treatment started sooner to slow progression.

I think your son has an excellent doctor who wants to leave no stone unturned in finding the cause of Owen's health problems. Get the Ambry Amplified genetic test like sakasuka recommended and don't worry about the outcome until the results are presented to you. Best wishes and I will be keeping your little one in prayer.
 

Jem

New member
When I was born I did not present with digestive issues. I was always in the high percentile for height and right in the middle for weight. My sweat test numbers were in the 30's. But right from the start I always had lung issues: chronic cough, colds, crackly chest, phelgm, allergies etc... Back in the olden days we did not have the genetic tests or the vast information about cf that are available today to help confirm cf earlier in life and get treatment started sooner to slow progression.

I think your son has an excellent doctor who wants to leave no stone unturned in finding the cause of Owen's health problems. Get the Ambry Amplified genetic test like sakasuka recommended and don't worry about the outcome until the results are presented to you. Best wishes and I will be keeping your little one in prayer.
 

Jem

New member
When I was born I did not present with digestive issues. I was always in the high percentile for height and right in the middle for weight. My sweat test numbers were in the 30's. But right from the start I always had lung issues: chronic cough, colds, crackly chest, phelgm, allergies etc... Back in the olden days we did not have the genetic tests or the vast information about cf that are available today to help confirm cf earlier in life and get treatment started sooner to slow progression.

I think your son has an excellent doctor who wants to leave no stone unturned in finding the cause of Owen's health problems. Get the Ambry Amplified genetic test like sakasuka recommended and don't worry about the outcome until the results are presented to you. Best wishes and I will be keeping your little one in prayer.
 

Jem

New member
When I was born I did not present with digestive issues. I was always in the high percentile for height and right in the middle for weight. My sweat test numbers were in the 30's. But right from the start I always had lung issues: chronic cough, colds, crackly chest, phelgm, allergies etc... Back in the olden days we did not have the genetic tests or the vast information about cf that are available today to help confirm cf earlier in life and get treatment started sooner to slow progression.

I think your son has an excellent doctor who wants to leave no stone unturned in finding the cause of Owen's health problems. Get the Ambry Amplified genetic test like sakasuka recommended and don't worry about the outcome until the results are presented to you. Best wishes and I will be keeping your little one in prayer.
 

Jem

New member
When I was born I did not present with digestive issues. I was always in the high percentile for height and right in the middle for weight. My sweat test numbers were in the 30's. But right from the start I always had lung issues: chronic cough, colds, crackly chest, phelgm, allergies etc... Back in the olden days we did not have the genetic tests or the vast information about cf that are available today to help confirm cf earlier in life and get treatment started sooner to slow progression.

I think your son has an excellent doctor who wants to leave no stone unturned in finding the cause of Owen's health problems. Get the Ambry Amplified genetic test like sakasuka recommended and don't worry about the outcome until the results are presented to you. Best wishes and I will be keeping your little one in prayer.
 
M

Mommafirst

Guest
Hi Nora,

I think its great that your doctor is trying to get to the bottom of this. If Owen does have CF, the earlier you know, the sooner you can get him preventative care. My daughter has no digestive involvement, and she doesn't taste any saltier than I do (although that isn't saying much). We don't have any known family history of CF, and the mutations my daughter has are not routinely picked up in the newborn screen. My point is that it is possible, my guess is that while their are only about 30,000 known cases of CF in this country, there are likely many missed diagnoses.

Follow your doctor through the testing process and I hope you can get a clear answer.
 
M

Mommafirst

Guest
Hi Nora,

I think its great that your doctor is trying to get to the bottom of this. If Owen does have CF, the earlier you know, the sooner you can get him preventative care. My daughter has no digestive involvement, and she doesn't taste any saltier than I do (although that isn't saying much). We don't have any known family history of CF, and the mutations my daughter has are not routinely picked up in the newborn screen. My point is that it is possible, my guess is that while their are only about 30,000 known cases of CF in this country, there are likely many missed diagnoses.

Follow your doctor through the testing process and I hope you can get a clear answer.
 
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