Anyone dx d/t a positive newborn screen?

[Face2thesunshine]

Our hospital screens for it where most hospitals don't, so those kids wouldn't get tested unless they were symptomatic. My nieces' screen was pos. though to this day she has had no symptoms, and I mean none at all (except right now her growth might be slacking off, but we'll see). Anyway, anyone know anyone who only got dx d/t the screen catching it(requiring further bloodwork)? Or is everyone dx d/t having a symptom requiring furhter testing?

 

[Face2thesunshine]

Our hospital screens for it where most hospitals don't, so those kids wouldn't get tested unless they were symptomatic. My nieces' screen was pos. though to this day she has had no symptoms, and I mean none at all (except right now her growth might be slacking off, but we'll see). Anyway, anyone know anyone who only got dx d/t the screen catching it(requiring further bloodwork)? Or is everyone dx d/t having a symptom requiring furhter testing?

 

[Face2thesunshine]

Our hospital screens for it where most hospitals don't, so those kids wouldn't get tested unless they were symptomatic. My nieces' screen was pos. though to this day she has had no symptoms, and I mean none at all (except right now her growth might be slacking off, but we'll see). Anyway, anyone know anyone who only got dx d/t the screen catching it(requiring further bloodwork)? Or is everyone dx d/t having a symptom requiring furhter testing?

 

[briellemom]

Our hospital screens for it too. Both of my kids screens came back negative, but my daughter is showing signs that she may have a mild form of it. I have never known of a newborn screen being the only diagnosing tool. I am new to this, but from what I know, they will follow up a positive screen with a sweat test and genetic testing. Hope this helps!

 

[briellemom]

Our hospital screens for it too. Both of my kids screens came back negative, but my daughter is showing signs that she may have a mild form of it. I have never known of a newborn screen being the only diagnosing tool. I am new to this, but from what I know, they will follow up a positive screen with a sweat test and genetic testing. Hope this helps!

 

[briellemom]

Our hospital screens for it too. Both of my kids screens came back negative, but my daughter is showing signs that she may have a mild form of it. I have never known of a newborn screen being the only diagnosing tool. I am new to this, but from what I know, they will follow up a positive screen with a sweat test and genetic testing. Hope this helps!

 

[GrammyB]

My granddaughter tested positive to two blood tests, which led to the sweat test, which confirmed her diagnosis

 

[GrammyB]

My granddaughter tested positive to two blood tests, which led to the sweat test, which confirmed her diagnosis

 

[GrammyB]

My granddaughter tested positive to two blood tests, which led to the sweat test, which confirmed her diagnosis

 

[JazzysMom]

There will start being more of this. For years people wouldnt get tested unless there was a family history which is pretty ironic considering a large number of dx have no known family history. Also symptoms often dont become "apparent" until a bit later thus they want the red flags on newborn screening to be national in hopes of catching things early.

 

[JazzysMom]

There will start being more of this. For years people wouldnt get tested unless there was a family history which is pretty ironic considering a large number of dx have no known family history. Also symptoms often dont become "apparent" until a bit later thus they want the red flags on newborn screening to be national in hopes of catching things early.

 

[JazzysMom]

There will start being more of this. For years people wouldnt get tested unless there was a family history which is pretty ironic considering a large number of dx have no known family history. Also symptoms often dont become "apparent" until a bit later thus they want the red flags on newborn screening to be national in hopes of catching things early.

 

[Daddy2Noah]

Noah was dx at birth. Tested due to my wife fiding out she was a carrier through a blood screen at like 15 weeks pregnant. then I was found otu to also be a carrier. So they tested Noah upon delivery.
He had no symptoms and still don't, although he was immediately put on some hefty meds and therapy, they say to prevent those symptoms.

Sometimes I wonder (it's only been 5 months though).

 

[Daddy2Noah]

Noah was dx at birth. Tested due to my wife fiding out she was a carrier through a blood screen at like 15 weeks pregnant. then I was found otu to also be a carrier. So they tested Noah upon delivery.
He had no symptoms and still don't, although he was immediately put on some hefty meds and therapy, they say to prevent those symptoms.

Sometimes I wonder (it's only been 5 months though).

 

[Daddy2Noah]

Noah was dx at birth. Tested due to my wife fiding out she was a carrier through a blood screen at like 15 weeks pregnant. then I was found otu to also be a carrier. So they tested Noah upon delivery.
He had no symptoms and still don't, although he was immediately put on some hefty meds and therapy, they say to prevent those symptoms.

Sometimes I wonder (it's only been 5 months though).

 

[purplemartin]

Kentucky started the mandatory testing just 4 months before Briceton was born. He was the first to come back with ""high" test results in this area. We then followed with a blood test, which followed with the diagnosis of CF.

Not sure if Briceton would have been diagnosed as of yet if it were not for the mandatory testing. Although we have had a few problems, like problems gaining weight, GERD which required surgery for aspirating (nissan-fundo) ,partial collapsed lung, many sinus infictions, pneumonia,.............. It seems from what I have read, CF seems to always pretty much be the LAST problem checked for. That being said I fell pretty blessed to have had Briceton's diagnosis so early on in his life! Just wish all states would jump on the CF testing wagon!

Sherry

 

[purplemartin]

Kentucky started the mandatory testing just 4 months before Briceton was born. He was the first to come back with ""high" test results in this area. We then followed with a blood test, which followed with the diagnosis of CF.

Not sure if Briceton would have been diagnosed as of yet if it were not for the mandatory testing. Although we have had a few problems, like problems gaining weight, GERD which required surgery for aspirating (nissan-fundo) ,partial collapsed lung, many sinus infictions, pneumonia,.............. It seems from what I have read, CF seems to always pretty much be the LAST problem checked for. That being said I fell pretty blessed to have had Briceton's diagnosis so early on in his life! Just wish all states would jump on the CF testing wagon!

Sherry

 

[purplemartin]

Kentucky started the mandatory testing just 4 months before Briceton was born. He was the first to come back with ""high" test results in this area. We then followed with a blood test, which followed with the diagnosis of CF.

Not sure if Briceton would have been diagnosed as of yet if it were not for the mandatory testing. Although we have had a few problems, like problems gaining weight, GERD which required surgery for aspirating (nissan-fundo) ,partial collapsed lung, many sinus infictions, pneumonia,.............. It seems from what I have read, CF seems to always pretty much be the LAST problem checked for. That being said I fell pretty blessed to have had Briceton's diagnosis so early on in his life! Just wish all states would jump on the CF testing wagon!

Sherry

 

[khar59]

How is Cystic Fibrosis diagnosed?
In New Zealand the National Testing Laboratory has been screening all new-born infants for Cystic Fibrosis since mid-1981. This test was devised by Professor Bob Elliott. It measures the amount of pancreatic enzymes in a baby's blood. This is conveniently done by using the blood spot sample which is routinely taken on all babies on the fifth day of life, and which is used to check for other diseases. This measurement of pancreatic enzyme levels is not a definitive diagnosis, but 'screens' out the babies that are likely to have Cystic Fibrosis.

 

[khar59]

How is Cystic Fibrosis diagnosed?
In New Zealand the National Testing Laboratory has been screening all new-born infants for Cystic Fibrosis since mid-1981. This test was devised by Professor Bob Elliott. It measures the amount of pancreatic enzymes in a baby's blood. This is conveniently done by using the blood spot sample which is routinely taken on all babies on the fifth day of life, and which is used to check for other diseases. This measurement of pancreatic enzyme levels is not a definitive diagnosis, but 'screens' out the babies that are likely to have Cystic Fibrosis.