Anyone diagnosed PI before being diagnosed w/CF

[MADHATTER1979]

I am new to this board and was hoping to find some more answers. I have a almost 5 mo. old son who had just been diagnosed with congenital pancreatic lipase and amylase insufficiency. He is going for another sweat test the end of the month. (He did not sweat enough when they did the first one about 2 mo. ago) He has been started on Creon 5 before every nursing session.

My Question is have any of you/ your children been diagnosed as pancreatic insufficient before being diagnosed with CF?

My understanding that PI in an infant with out CF is extremely rare and nearly unheard of.

My son's only symptoms have been a meconium plug (he passed without surgery), persistent belly problems, and a lingering cold. Any information you have to offer would be greatly appreciated.

 

[MADHATTER1979]

I am new to this board and was hoping to find some more answers. I have a almost 5 mo. old son who had just been diagnosed with congenital pancreatic lipase and amylase insufficiency. He is going for another sweat test the end of the month. (He did not sweat enough when they did the first one about 2 mo. ago) He has been started on Creon 5 before every nursing session.

My Question is have any of you/ your children been diagnosed as pancreatic insufficient before being diagnosed with CF?

My understanding that PI in an infant with out CF is extremely rare and nearly unheard of.

My son's only symptoms have been a meconium plug (he passed without surgery), persistent belly problems, and a lingering cold. Any information you have to offer would be greatly appreciated.

 

[MADHATTER1979]

I am new to this board and was hoping to find some more answers. I have a almost 5 mo. old son who had just been diagnosed with congenital pancreatic lipase and amylase insufficiency. He is going for another sweat test the end of the month. (He did not sweat enough when they did the first one about 2 mo. ago) He has been started on Creon 5 before every nursing session.

My Question is have any of you/ your children been diagnosed as pancreatic insufficient before being diagnosed with CF?

My understanding that PI in an infant with out CF is extremely rare and nearly unheard of.

My son's only symptoms have been a meconium plug (he passed without surgery), persistent belly problems, and a lingering cold. Any information you have to offer would be greatly appreciated.

 

[MADHATTER1979]

I am new to this board and was hoping to find some more answers. I have a almost 5 mo. old son who had just been diagnosed with congenital pancreatic lipase and amylase insufficiency. He is going for another sweat test the end of the month. (He did not sweat enough when they did the first one about 2 mo. ago) He has been started on Creon 5 before every nursing session.

My Question is have any of you/ your children been diagnosed as pancreatic insufficient before being diagnosed with CF?

My understanding that PI in an infant with out CF is extremely rare and nearly unheard of.

My son's only symptoms have been a meconium plug (he passed without surgery), persistent belly problems, and a lingering cold. Any information you have to offer would be greatly appreciated.

 

[MADHATTER1979]

I am new to this board and was hoping to find some more answers. I have a almost 5 mo. old son who had just been diagnosed with congenital pancreatic lipase and amylase insufficiency. He is going for another sweat test the end of the month. (He did not sweat enough when they did the first one about 2 mo. ago) He has been started on Creon 5 before every nursing session.
<br />
<br />My Question is have any of you/ your children been diagnosed as pancreatic insufficient before being diagnosed with CF?
<br />
<br />My understanding that PI in an infant with out CF is extremely rare and nearly unheard of.
<br />
<br />My son's only symptoms have been a meconium plug (he passed without surgery), persistent belly problems, and a lingering cold. Any information you have to offer would be greatly appreciated.

 

[Rebjane]

I would tell your pediatrician you want the genetic blood test done on your baby for CF mutations. Do you know if you are a carrier for CF? Sometimes carrier testing is done when you are pregnant. The blood test can take 2-4 weeks to be resulted. Ambry genetics does the most comprehensive testing.

 

[Rebjane]

I would tell your pediatrician you want the genetic blood test done on your baby for CF mutations. Do you know if you are a carrier for CF? Sometimes carrier testing is done when you are pregnant. The blood test can take 2-4 weeks to be resulted. Ambry genetics does the most comprehensive testing.

 

[Rebjane]

I would tell your pediatrician you want the genetic blood test done on your baby for CF mutations. Do you know if you are a carrier for CF? Sometimes carrier testing is done when you are pregnant. The blood test can take 2-4 weeks to be resulted. Ambry genetics does the most comprehensive testing.

 

[Rebjane]

I would tell your pediatrician you want the genetic blood test done on your baby for CF mutations. Do you know if you are a carrier for CF? Sometimes carrier testing is done when you are pregnant. The blood test can take 2-4 weeks to be resulted. Ambry genetics does the most comprehensive testing.

 

[Rebjane]

I would tell your pediatrician you want the genetic blood test done on your baby for CF mutations. Do you know if you are a carrier for CF? Sometimes carrier testing is done when you are pregnant. The blood test can take 2-4 weeks to be resulted. Ambry genetics does the most comprehensive testing.

 

[MADHATTER1979]

I did not have the carrier testing done. I live in NC and they do not do CF testing in the newborn screen. Should I insist on blood testing if they do not get enough sweat this time?

 

[MADHATTER1979]

I did not have the carrier testing done. I live in NC and they do not do CF testing in the newborn screen. Should I insist on blood testing if they do not get enough sweat this time?

 

[MADHATTER1979]

I did not have the carrier testing done. I live in NC and they do not do CF testing in the newborn screen. Should I insist on blood testing if they do not get enough sweat this time?

 

[MADHATTER1979]

I did not have the carrier testing done. I live in NC and they do not do CF testing in the newborn screen. Should I insist on blood testing if they do not get enough sweat this time?

 

[MADHATTER1979]

I did not have the carrier testing done. I live in NC and they do not do CF testing in the newborn screen. Should I insist on blood testing if they do not get enough sweat this time?

 

[Rebjane]

I would push for the blood test, absolutely. NC has great CF clinics; just so you know. If you go to www.cff.org you can look up a CF clinic closest to you that is accrediated. That is the Cystic Fibrosis Foundation's website. I hope it is not CF but if it is your baby will get the proper treatment. This website is a wealth of information and support. I'm sure you are worried and stressed, we've been there. My daughter is now almost 6 with CF; she's in kindergarten and a very pesky little sister to her big brother(who does not have CF)

 

[Rebjane]

I would push for the blood test, absolutely. NC has great CF clinics; just so you know. If you go to www.cff.org you can look up a CF clinic closest to you that is accrediated. That is the Cystic Fibrosis Foundation's website. I hope it is not CF but if it is your baby will get the proper treatment. This website is a wealth of information and support. I'm sure you are worried and stressed, we've been there. My daughter is now almost 6 with CF; she's in kindergarten and a very pesky little sister to her big brother(who does not have CF)

 

[Rebjane]

I would push for the blood test, absolutely. NC has great CF clinics; just so you know. If you go to www.cff.org you can look up a CF clinic closest to you that is accrediated. That is the Cystic Fibrosis Foundation's website. I hope it is not CF but if it is your baby will get the proper treatment. This website is a wealth of information and support. I'm sure you are worried and stressed, we've been there. My daughter is now almost 6 with CF; she's in kindergarten and a very pesky little sister to her big brother(who does not have CF)

 

[Rebjane]

I would push for the blood test, absolutely. NC has great CF clinics; just so you know. If you go to www.cff.org you can look up a CF clinic closest to you that is accrediated. That is the Cystic Fibrosis Foundation's website. I hope it is not CF but if it is your baby will get the proper treatment. This website is a wealth of information and support. I'm sure you are worried and stressed, we've been there. My daughter is now almost 6 with CF; she's in kindergarten and a very pesky little sister to her big brother(who does not have CF)

 

[Rebjane]

I would push for the blood test, absolutely. NC has great CF clinics; just so you know. If you go to www.cff.org you can look up a CF clinic closest to you that is accrediated. That is the Cystic Fibrosis Foundation's website. I hope it is not CF but if it is your baby will get the proper treatment. This website is a wealth of information and support. I'm sure you are worried and stressed, we've been there. My daughter is now almost 6 with CF; she's in kindergarten and a very pesky little sister to her big brother(who does not have CF)