Son had abnormal Newborn test.. Please Read

[MaryamsMommy]

Hi, I must agree thats along time to wait. Did you ask what made them believe your child should be further tested? Here is the state I live in California they actually due full genetic panel of more then 1000 muttions as prt of new born screening. what tests do they run there for new born screening?

Karen
Mommy To Maryam 10 with CF

 

[MaryamsMommy]

Hi, I must agree thats along time to wait. Did you ask what made them believe your child should be further tested? Here is the state I live in California they actually due full genetic panel of more then 1000 muttions as prt of new born screening. what tests do they run there for new born screening?
<br />
<br />Karen
<br />Mommy To Maryam 10 with CF

 

[MIZZVIKVIK]

The only thing I was told by my sons dr is that his newborn screen came back abnormal for CF.. I seen alot of other people got more information at this stage.. I feel kind of left in the dark... He goes back to his dr on next wednesday so I am going to ask some questions then.. I know they cannot tell me anything up front but I would like to know why some people get a positive screen at the hospital and some say it was an abnormal screen.. IDK do you know anything about this.. Im just confused.. and still in the waiting game...

 

[MIZZVIKVIK]

The only thing I was told by my sons dr is that his newborn screen came back abnormal for CF.. I seen alot of other people got more information at this stage.. I feel kind of left in the dark... He goes back to his dr on next wednesday so I am going to ask some questions then.. I know they cannot tell me anything up front but I would like to know why some people get a positive screen at the hospital and some say it was an abnormal screen.. IDK do you know anything about this.. Im just confused.. and still in the waiting game...

 

[MIZZVIKVIK]

The only thing I was told by my sons dr is that his newborn screen came back abnormal for CF.. I seen alot of other people got more information at this stage.. I feel kind of left in the dark... He goes back to his dr on next wednesday so I am going to ask some questions then.. I know they cannot tell me anything up front but I would like to know why some people get a positive screen at the hospital and some say it was an abnormal screen.. IDK do you know anything about this.. Im just confused.. and still in the waiting game...

 

[Mommafirst]

I think some of the confusion comes from the differences in newborn testing across states. In Ohio they JUST measure IRT levels, which, if elevated, is a red flag for CF. IRT levels can be elevated for other reasons including being a CF carrier. In some states, however, they test for IRT levels and the Delta F508 mutation. In some cases they can immediately determine if a child has CF, because the most common mutation is the Delta F508 and a child that has 2 copies of it will show up immediately with that type of newborn test. Not having the DF508 does not rule out CF, however, since there are over 1600 different mutations.

I hope this helps.

 

[Mommafirst]

I think some of the confusion comes from the differences in newborn testing across states. In Ohio they JUST measure IRT levels, which, if elevated, is a red flag for CF. IRT levels can be elevated for other reasons including being a CF carrier. In some states, however, they test for IRT levels and the Delta F508 mutation. In some cases they can immediately determine if a child has CF, because the most common mutation is the Delta F508 and a child that has 2 copies of it will show up immediately with that type of newborn test. Not having the DF508 does not rule out CF, however, since there are over 1600 different mutations.

I hope this helps.

 

[Mommafirst]

I think some of the confusion comes from the differences in newborn testing across states. In Ohio they JUST measure IRT levels, which, if elevated, is a red flag for CF. IRT levels can be elevated for other reasons including being a CF carrier. In some states, however, they test for IRT levels and the Delta F508 mutation. In some cases they can immediately determine if a child has CF, because the most common mutation is the Delta F508 and a child that has 2 copies of it will show up immediately with that type of newborn test. Not having the DF508 does not rule out CF, however, since there are over 1600 different mutations.
<br />
<br />I hope this helps.

 

[flwrchldkb]

I am in the same spot you are in. DD was born 10/30/10. The doctor called us yesterday to tell us that her newborn screen came back postive for cf. I found out when the nurse called to tell us when our appointment at Texas Children's Hospital was and I asked why we were going to have an appointment. We don't go until Dec 7th. I wish you the best of luck on your son's test.

 

[flwrchldkb]

I am in the same spot you are in. DD was born 10/30/10. The doctor called us yesterday to tell us that her newborn screen came back postive for cf. I found out when the nurse called to tell us when our appointment at Texas Children's Hospital was and I asked why we were going to have an appointment. We don't go until Dec 7th. I wish you the best of luck on your son's test.

 

[flwrchldkb]

I am in the same spot you are in. DD was born 10/30/10. The doctor called us yesterday to tell us that her newborn screen came back postive for cf. I found out when the nurse called to tell us when our appointment at Texas Children's Hospital was and I asked why we were going to have an appointment. We don't go until Dec 7th. I wish you the best of luck on your son's test.