Son had abnormal Newborn test.. Please Read

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MIZZVIKVIK

New member
My son was born 10/28/2010 I got a call from his dr last week saying that he needs to go and have a sweat test done.. I have it scheduled but they cannot get me in any sooner than 12/06/10.. I have been worrying myself to death and read about every artice I could find about CF online... I just have a few questions I dont know if any of you could actually answer them, but anything that you could tell me would be of some comfort... I have been looking for any kind of symtoms that would make me question if he has it.. Here is what I have determined.. I kissed him forehead and even licked it.. didnt taste salty at all to me.. also did his arms and stomach.. still didnt notice anything.. but when I got to his feet I did notice an awful salty taste.. I also notice he has not been having regualr bowel movements.. I think once or twice when I brought him home they were find and firm.. now I see he has had two that have been very loose.. Did notice some what of a smell to them but cannot really say it was a bad smell or not.. he coughs at times but doesnt seem to be very constant.. I dont notice any weezing but I do notice that when he is resting and I am holding him when he breaths sometimes they seem very short and rapid but it doesnt happen all of the time.. I was just wondering if they sounds like he has a high possibility of having CF.. do these sound like symtoms associated with CF.. I hate this waiting game I think its acutally worse than if I found out he has it... Id rather know already and get the information I need rather than feeling like im left in the dark...

Well, I do appreciate all who will read this and the feedback will help to ease my mind.. thanks so much again


Vikki Meade
 
M

MIZZVIKVIK

New member
My son was born 10/28/2010 I got a call from his dr last week saying that he needs to go and have a sweat test done.. I have it scheduled but they cannot get me in any sooner than 12/06/10.. I have been worrying myself to death and read about every artice I could find about CF online... I just have a few questions I dont know if any of you could actually answer them, but anything that you could tell me would be of some comfort... I have been looking for any kind of symtoms that would make me question if he has it.. Here is what I have determined.. I kissed him forehead and even licked it.. didnt taste salty at all to me.. also did his arms and stomach.. still didnt notice anything.. but when I got to his feet I did notice an awful salty taste.. I also notice he has not been having regualr bowel movements.. I think once or twice when I brought him home they were find and firm.. now I see he has had two that have been very loose.. Did notice some what of a smell to them but cannot really say it was a bad smell or not.. he coughs at times but doesnt seem to be very constant.. I dont notice any weezing but I do notice that when he is resting and I am holding him when he breaths sometimes they seem very short and rapid but it doesnt happen all of the time.. I was just wondering if they sounds like he has a high possibility of having CF.. do these sound like symtoms associated with CF.. I hate this waiting game I think its acutally worse than if I found out he has it... Id rather know already and get the information I need rather than feeling like im left in the dark...

Well, I do appreciate all who will read this and the feedback will help to ease my mind.. thanks so much again


Vikki Meade
 
M

MIZZVIKVIK

New member
My son was born 10/28/2010 I got a call from his dr last week saying that he needs to go and have a sweat test done.. I have it scheduled but they cannot get me in any sooner than 12/06/10.. I have been worrying myself to death and read about every artice I could find about CF online... I just have a few questions I dont know if any of you could actually answer them, but anything that you could tell me would be of some comfort... I have been looking for any kind of symtoms that would make me question if he has it.. Here is what I have determined.. I kissed him forehead and even licked it.. didnt taste salty at all to me.. also did his arms and stomach.. still didnt notice anything.. but when I got to his feet I did notice an awful salty taste.. I also notice he has not been having regualr bowel movements.. I think once or twice when I brought him home they were find and firm.. now I see he has had two that have been very loose.. Did notice some what of a smell to them but cannot really say it was a bad smell or not.. he coughs at times but doesnt seem to be very constant.. I dont notice any weezing but I do notice that when he is resting and I am holding him when he breaths sometimes they seem very short and rapid but it doesnt happen all of the time.. I was just wondering if they sounds like he has a high possibility of having CF.. do these sound like symtoms associated with CF.. I hate this waiting game I think its acutally worse than if I found out he has it... Id rather know already and get the information I need rather than feeling like im left in the dark...
<br />
<br />Well, I do appreciate all who will read this and the feedback will help to ease my mind.. thanks so much again
<br />
<br />
<br />Vikki Meade
 
M

Mommafirst

Guest
Hello Vikki, I'm sorry you are dealing with the craze of being in limbo. I know its hard to wait,but there is a good chance you won't see symptoms at this age. Stop licking your son, and try (I know its impossible) to put it to the back of your mind until the sweat test. On the plus side, the newborn screen has a HIGH rate of finding just carriers. Something like 9 of every 10. If he does develop symptoms, call your dr. But even if he has CF its possible you wouldn't know it to look at him.
 
M

Mommafirst

Guest
Hello Vikki, I'm sorry you are dealing with the craze of being in limbo. I know its hard to wait,but there is a good chance you won't see symptoms at this age. Stop licking your son, and try (I know its impossible) to put it to the back of your mind until the sweat test. On the plus side, the newborn screen has a HIGH rate of finding just carriers. Something like 9 of every 10. If he does develop symptoms, call your dr. But even if he has CF its possible you wouldn't know it to look at him.
 
M

Mommafirst

Guest
Hello Vikki, I'm sorry you are dealing with the craze of being in limbo. I know its hard to wait,but there is a good chance you won't see symptoms at this age. Stop licking your son, and try (I know its impossible) to put it to the back of your mind until the sweat test. On the plus side, the newborn screen has a HIGH rate of finding just carriers. Something like 9 of every 10. If he does develop symptoms, call your dr. But even if he has CF its possible you wouldn't know it to look at him.
 
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NancyLKF

New member
Hi. I'm sorry you are going through this. Heather is right. Newborn screening gives false positives more often than true positives. In fact, our CF social worker told us just this week that every week they do 5-6 sweat tests and haven't had an actual CF diagnosis since June. You will drive yourself crazy looking for symptoms. I'm sorry you have to wait until December for the test - I don't think that's fair to do to a parent. At our clinic we were in there in two days! Maggie is almost 2 now and I spent some time after diagnosis looking for things to be wrong, but she's had no lung issues so far and only digestive problems. (and all babies poop kinda funny) Each CF case is different. So please try to relax and enjoy your baby. (I know this is easier said than done). The test will be here soon enough. I'll be thinking of you. Please keep us posted.
 
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NancyLKF

New member
Hi. I'm sorry you are going through this. Heather is right. Newborn screening gives false positives more often than true positives. In fact, our CF social worker told us just this week that every week they do 5-6 sweat tests and haven't had an actual CF diagnosis since June. You will drive yourself crazy looking for symptoms. I'm sorry you have to wait until December for the test - I don't think that's fair to do to a parent. At our clinic we were in there in two days! Maggie is almost 2 now and I spent some time after diagnosis looking for things to be wrong, but she's had no lung issues so far and only digestive problems. (and all babies poop kinda funny) Each CF case is different. So please try to relax and enjoy your baby. (I know this is easier said than done). The test will be here soon enough. I'll be thinking of you. Please keep us posted.
 
N

NancyLKF

New member
Hi. I'm sorry you are going through this. Heather is right. Newborn screening gives false positives more often than true positives. In fact, our CF social worker told us just this week that every week they do 5-6 sweat tests and haven't had an actual CF diagnosis since June. You will drive yourself crazy looking for symptoms. I'm sorry you have to wait until December for the test - I don't think that's fair to do to a parent. At our clinic we were in there in two days! Maggie is almost 2 now and I spent some time after diagnosis looking for things to be wrong, but she's had no lung issues so far and only digestive problems. (and all babies poop kinda funny) Each CF case is different. So please try to relax and enjoy your baby. (I know this is easier said than done). The test will be here soon enough. I'll be thinking of you. Please keep us posted.
 
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