Son had abnormal Newborn test.. Please Read have to wait 12/6 for sweat test

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...

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
 
G

Georgiatwins

New member
Hey Vikki,

I have twin daughters who were diagnosed with CF at 6 wks. of age. Neither of them tasted salty at all to me until recently (they're 4 mos. old). And even now, it's not a "WHOA, in your face type salty...just salty as in..they're hot and sweaty" I taste salty when I sweat, but I don't have CF <img src="i/expressions/face-icon-small-blush.gif" border="0">/ The biggest symptom that my girls have is the pancreatic insufficiency. They wouldn't gain weight at the hospital and obviously we didn't know they had CF until the DNA test came back positive. Did they do any kind of blood/DNA test on him to determine if he has CF? Usually that's done if the newborn screen shows signs of it (elevated IRT levels).

My girls stools have always stunk <img src="i/expressions/face-icon-small-smile.gif" border="0"> and they're even worse now that we've started giving them cereal <img src="i/expressions/face-icon-small-smile.gif" border="0">

Coughs will come and go with both of my girls. I've been told that the slight cough they have ever once in a while is a seasonal cough and is not a CF cough.

Hopefully you will get some answers soon, and we'll pray that it's not CF <img src="i/expressions/face-icon-small-smile.gif" border="0">, but if it is, know that you have a LARGE support group here! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Kelley
 
G

Georgiatwins

New member
Hey Vikki,

I have twin daughters who were diagnosed with CF at 6 wks. of age. Neither of them tasted salty at all to me until recently (they're 4 mos. old). And even now, it's not a "WHOA, in your face type salty...just salty as in..they're hot and sweaty" I taste salty when I sweat, but I don't have CF <img src="i/expressions/face-icon-small-blush.gif" border="0">/ The biggest symptom that my girls have is the pancreatic insufficiency. They wouldn't gain weight at the hospital and obviously we didn't know they had CF until the DNA test came back positive. Did they do any kind of blood/DNA test on him to determine if he has CF? Usually that's done if the newborn screen shows signs of it (elevated IRT levels).

My girls stools have always stunk <img src="i/expressions/face-icon-small-smile.gif" border="0"> and they're even worse now that we've started giving them cereal <img src="i/expressions/face-icon-small-smile.gif" border="0">

Coughs will come and go with both of my girls. I've been told that the slight cough they have ever once in a while is a seasonal cough and is not a CF cough.

Hopefully you will get some answers soon, and we'll pray that it's not CF <img src="i/expressions/face-icon-small-smile.gif" border="0">, but if it is, know that you have a LARGE support group here! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Kelley
 
G

Georgiatwins

New member
Hey Vikki,
<br />
<br />I have twin daughters who were diagnosed with CF at 6 wks. of age. Neither of them tasted salty at all to me until recently (they're 4 mos. old). And even now, it's not a "WHOA, in your face type salty...just salty as in..they're hot and sweaty" I taste salty when I sweat, but I don't have CF <img src="i/expressions/face-icon-small-blush.gif" border="0">/ The biggest symptom that my girls have is the pancreatic insufficiency. They wouldn't gain weight at the hospital and obviously we didn't know they had CF until the DNA test came back positive. Did they do any kind of blood/DNA test on him to determine if he has CF? Usually that's done if the newborn screen shows signs of it (elevated IRT levels).
<br />
<br />My girls stools have always stunk <img src="i/expressions/face-icon-small-smile.gif" border="0"> and they're even worse now that we've started giving them cereal <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Coughs will come and go with both of my girls. I've been told that the slight cough they have ever once in a while is a seasonal cough and is not a CF cough.
<br />
<br />Hopefully you will get some answers soon, and we'll pray that it's not CF <img src="i/expressions/face-icon-small-smile.gif" border="0">, but if it is, know that you have a LARGE support group here! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Kelley
 
M

MIZZVIKVIK

New member
He did have a newborn screen at the hospital and then they sent me to hospital after I was released to have a similar test done.. they pricked his foot and took blood from it.. they told me it was to check to see if he still had jaundice because he was a little jaundice when he was born.. but now im thinking maybe they tested for the CF a second time and they didnt tell me.. I feel kind of left in the dark.. No one has really told me anything besides his test from the hospital came back abnormal and he needs to have a sweat test done... He is constipated and when he does poop it is no where near formed.. Kind of like it splashed in the diaper.. he only has been pooping once every couple days but has not been fussy that much.. I just can tell hes been struggling with going.. thats really all I know at this point.. thanks for your response it makes me feel a little better. I was tested in pregnancy and my ob told me that my test for being a carrier came back as negative I am not sure about the father of my child because we are no longer together.. but I also heard that even though my test came back negative I could still be a carrier.
 
M

MIZZVIKVIK

New member
He did have a newborn screen at the hospital and then they sent me to hospital after I was released to have a similar test done.. they pricked his foot and took blood from it.. they told me it was to check to see if he still had jaundice because he was a little jaundice when he was born.. but now im thinking maybe they tested for the CF a second time and they didnt tell me.. I feel kind of left in the dark.. No one has really told me anything besides his test from the hospital came back abnormal and he needs to have a sweat test done... He is constipated and when he does poop it is no where near formed.. Kind of like it splashed in the diaper.. he only has been pooping once every couple days but has not been fussy that much.. I just can tell hes been struggling with going.. thats really all I know at this point.. thanks for your response it makes me feel a little better. I was tested in pregnancy and my ob told me that my test for being a carrier came back as negative I am not sure about the father of my child because we are no longer together.. but I also heard that even though my test came back negative I could still be a carrier.
 
M

MIZZVIKVIK

New member
He did have a newborn screen at the hospital and then they sent me to hospital after I was released to have a similar test done.. they pricked his foot and took blood from it.. they told me it was to check to see if he still had jaundice because he was a little jaundice when he was born.. but now im thinking maybe they tested for the CF a second time and they didnt tell me.. I feel kind of left in the dark.. No one has really told me anything besides his test from the hospital came back abnormal and he needs to have a sweat test done... He is constipated and when he does poop it is no where near formed.. Kind of like it splashed in the diaper.. he only has been pooping once every couple days but has not been fussy that much.. I just can tell hes been struggling with going.. thats really all I know at this point.. thanks for your response it makes me feel a little better. I was tested in pregnancy and my ob told me that my test for being a carrier came back as negative I am not sure about the father of my child because we are no longer together.. but I also heard that even though my test came back negative I could still be a carrier.
 
B

boman4802

New member
Vikki-
The "waiting game" is so tough! Just wanted to let you know that you are not alone. Many of us have been in the same situation and it is a horrible feeling. When my daughter was born her newborn screening came back high also. We were then sent to the lab for another heel prick and repeat of the screening. When it came back high the second time we were then sent for the sweat test. It is a horrible roller coaster ride of emotions. I think we have all been there where you are looking for anything that could be CF, once the possiblity is introduced. I did the same thing with my daughter...I would lick her forehead, had my husband and my mom do the same. Honestly, I couldn't tell anything.....though I so badly wanted some answers. Just know you are not alone...I will be thinking and praying for you and your precious baby boy.
Andrea
 
B

boman4802

New member
Vikki-
The "waiting game" is so tough! Just wanted to let you know that you are not alone. Many of us have been in the same situation and it is a horrible feeling. When my daughter was born her newborn screening came back high also. We were then sent to the lab for another heel prick and repeat of the screening. When it came back high the second time we were then sent for the sweat test. It is a horrible roller coaster ride of emotions. I think we have all been there where you are looking for anything that could be CF, once the possiblity is introduced. I did the same thing with my daughter...I would lick her forehead, had my husband and my mom do the same. Honestly, I couldn't tell anything.....though I so badly wanted some answers. Just know you are not alone...I will be thinking and praying for you and your precious baby boy.
Andrea
 
B

boman4802

New member
Vikki-
<br />The "waiting game" is so tough! Just wanted to let you know that you are not alone. Many of us have been in the same situation and it is a horrible feeling. When my daughter was born her newborn screening came back high also. We were then sent to the lab for another heel prick and repeat of the screening. When it came back high the second time we were then sent for the sweat test. It is a horrible roller coaster ride of emotions. I think we have all been there where you are looking for anything that could be CF, once the possiblity is introduced. I did the same thing with my daughter...I would lick her forehead, had my husband and my mom do the same. Honestly, I couldn't tell anything.....though I so badly wanted some answers. Just know you are not alone...I will be thinking and praying for you and your precious baby boy.
<br />Andrea
 
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