Son had abnormal Newborn test.. Please Read

[amber682]

First off, Congratulations on your new baby boy!
<br />
<br />I know its hard not to worry, but try not to overanalize every little thing he does. All the things you listed are normal newborn things. Maybe his feet had been sweaty, maybe his tummy got a little upset, maybe he did a little cough because he refluxed a bit. My son wasn't diagnosed until he was a about 3-4 months old, and I hadn't noticed anything odd before that. With my DD we knew, but the nurses in the hospital said she was the healthiest baby in the nursery.
<br />
<br />Try to enjoy him and not worry yourself sick, I know its hard. Be careful what you read on the internet. Try to focus on the holidays for the next few weeks. Good luck with everything <img src="i/expressions/heart.gif" border="0">

 

[dlo2977]

I don't think anything you described sounds specific for CF. Baby poop can vary greatly in consistency. It is only considered abnormal if it is black, bloody or greasy. Rapid breathing is normal to see during certain stages of sleep. My daughter wasn't diagnosed until she was almost 3. She was born small but gained weight at a regular rate and didn't have any symptoms at all as a baby. I am surprised that they couldn't get you in for the sweat test for that long. The odds are that he is fine so try not to overanalyze everything he does before the test...

 

[dlo2977]

I don't think anything you described sounds specific for CF. Baby poop can vary greatly in consistency. It is only considered abnormal if it is black, bloody or greasy. Rapid breathing is normal to see during certain stages of sleep. My daughter wasn't diagnosed until she was almost 3. She was born small but gained weight at a regular rate and didn't have any symptoms at all as a baby. I am surprised that they couldn't get you in for the sweat test for that long. The odds are that he is fine so try not to overanalyze everything he does before the test...

 

[dlo2977]

I don't think anything you described sounds specific for CF. Baby poop can vary greatly in consistency. It is only considered abnormal if it is black, bloody or greasy. Rapid breathing is normal to see during certain stages of sleep. My daughter wasn't diagnosed until she was almost 3. She was born small but gained weight at a regular rate and didn't have any symptoms at all as a baby. I am surprised that they couldn't get you in for the sweat test for that long. The odds are that he is fine so try not to overanalyze everything he does before the test...

 

[MIZZVIKVIK]

Thanks so much for the feedback.. son still has not had a bowel movement and his last one was about 4 days ago.. Im waiting on him to have another one so I can see what it looks like just to see if it looks the same as it did before.. I still dont know what a greasy stool would look like.. I am gonna try not to worry so much and I will try to give them a call monday to see what they can do.. the Akron Childrens Hospital is a little over an hour away and now I am having car troubles so I dont even know when I will beable to get there to have the test done... Hopefully I can get my car taken care of tomorrow if not I will just wait it out and pray that things come together for us so we can get the testing done as soon as possible... I really do appreciate everyone who has repled to my posting.. It has made me feel much better these last 2 days... If he does have CF I just want to know so I can ask questions and get him what he needs to thrive.. I feel left in the dark and its a horrible feeling when it comes to my children... My son is gaining weight he has not been back to the dr but we have an appointment on wednesday.. I can tell hes gaining weight because the clothing he didnt fit when he came home is fitting him now...

 

[MIZZVIKVIK]

Thanks so much for the feedback.. son still has not had a bowel movement and his last one was about 4 days ago.. Im waiting on him to have another one so I can see what it looks like just to see if it looks the same as it did before.. I still dont know what a greasy stool would look like.. I am gonna try not to worry so much and I will try to give them a call monday to see what they can do.. the Akron Childrens Hospital is a little over an hour away and now I am having car troubles so I dont even know when I will beable to get there to have the test done... Hopefully I can get my car taken care of tomorrow if not I will just wait it out and pray that things come together for us so we can get the testing done as soon as possible... I really do appreciate everyone who has repled to my posting.. It has made me feel much better these last 2 days... If he does have CF I just want to know so I can ask questions and get him what he needs to thrive.. I feel left in the dark and its a horrible feeling when it comes to my children... My son is gaining weight he has not been back to the dr but we have an appointment on wednesday.. I can tell hes gaining weight because the clothing he didnt fit when he came home is fitting him now...

 

[MIZZVIKVIK]

Thanks so much for the feedback.. son still has not had a bowel movement and his last one was about 4 days ago.. Im waiting on him to have another one so I can see what it looks like just to see if it looks the same as it did before.. I still dont know what a greasy stool would look like.. I am gonna try not to worry so much and I will try to give them a call monday to see what they can do.. the Akron Childrens Hospital is a little over an hour away and now I am having car troubles so I dont even know when I will beable to get there to have the test done... Hopefully I can get my car taken care of tomorrow if not I will just wait it out and pray that things come together for us so we can get the testing done as soon as possible... I really do appreciate everyone who has repled to my posting.. It has made me feel much better these last 2 days... If he does have CF I just want to know so I can ask questions and get him what he needs to thrive.. I feel left in the dark and its a horrible feeling when it comes to my children... My son is gaining weight he has not been back to the dr but we have an appointment on wednesday.. I can tell hes gaining weight because the clothing he didnt fit when he came home is fitting him now...

 

[MIZZVIKVIK]

Boy am I frusterated... I have a sweat test scheduled for Dec 6th wanted to try to get in sooner but I'm thinking its best to just keep the appointment I have.. I am having car trouble and I am not really sure when I will be able to get it fixed.. With the Akron Childrens Hospital being a little over an hour away.. Im stressed wondering how I am going to get to the test... My mother can take me but she wont beable to do so until January when she has time to take off work... Does anyone think its crucial for me to get in asap or would it be ok if I have to wait until january?

 

[MIZZVIKVIK]

Boy am I frusterated... I have a sweat test scheduled for Dec 6th wanted to try to get in sooner but I'm thinking its best to just keep the appointment I have.. I am having car trouble and I am not really sure when I will be able to get it fixed.. With the Akron Childrens Hospital being a little over an hour away.. Im stressed wondering how I am going to get to the test... My mother can take me but she wont beable to do so until January when she has time to take off work... Does anyone think its crucial for me to get in asap or would it be ok if I have to wait until january?

 

[MIZZVIKVIK]

Boy am I frusterated... I have a sweat test scheduled for Dec 6th wanted to try to get in sooner but I'm thinking its best to just keep the appointment I have.. I am having car trouble and I am not really sure when I will be able to get it fixed.. With the Akron Childrens Hospital being a little over an hour away.. Im stressed wondering how I am going to get to the test... My mother can take me but she wont beable to do so until January when she has time to take off work... Does anyone think its crucial for me to get in asap or would it be ok if I have to wait until january?

 

[AleksandraKaczynska]

I guess it would be better if you did this test as soon as possible - it's a big stress for you most of all. Since your son is gaining weight and has no infections - january will come sooner then you think.
But it would be nice to have all this guessing and doubts behind you for Christmas...
Maybe a friend can take you or borrow her car?- the sooner the better.

 

[AleksandraKaczynska]

I guess it would be better if you did this test as soon as possible - it's a big stress for you most of all. Since your son is gaining weight and has no infections - january will come sooner then you think.
But it would be nice to have all this guessing and doubts behind you for Christmas...
Maybe a friend can take you or borrow her car?- the sooner the better.

 

[AleksandraKaczynska]

I guess it would be better if you did this test as soon as possible - it's a big stress for you most of all. Since your son is gaining weight and has no infections - january will come sooner then you think.
<br />But it would be nice to have all this guessing and doubts behind you for Christmas...
<br />Maybe a friend can take you or borrow her car?- the sooner the better.

 

[MIZZVIKVIK]

Im going to do all I can to get there for the appointment in December.. I just feel real guilty if there is no way I can get to it I will just have to reschedule.. Id go tomorrow if it was up to me.. but in all reality there are certain things I cannot control right now so I might just have to wait it out.. as much as I dont want to.. I dont have many friends.. actually maybe a few but most of them dont live around here anymore... I will see what I can do but thanks for the reply.. atleast I wont beat myself up over it if all else fails and it needs rescheduled

 

[MIZZVIKVIK]

Im going to do all I can to get there for the appointment in December.. I just feel real guilty if there is no way I can get to it I will just have to reschedule.. Id go tomorrow if it was up to me.. but in all reality there are certain things I cannot control right now so I might just have to wait it out.. as much as I dont want to.. I dont have many friends.. actually maybe a few but most of them dont live around here anymore... I will see what I can do but thanks for the reply.. atleast I wont beat myself up over it if all else fails and it needs rescheduled

 

[MIZZVIKVIK]

Im going to do all I can to get there for the appointment in December.. I just feel real guilty if there is no way I can get to it I will just have to reschedule.. Id go tomorrow if it was up to me.. but in all reality there are certain things I cannot control right now so I might just have to wait it out.. as much as I dont want to.. I dont have many friends.. actually maybe a few but most of them dont live around here anymore... I will see what I can do but thanks for the reply.. atleast I wont beat myself up over it if all else fails and it needs rescheduled

 

[zoe4life]

Hi there...I just wanted to tell you that my daughers doctor is the dr that got the newborn screening to be mandatory in the state of Fl. a couple of years ago. Her and I were discussing the test outcomes. There is an EXTREMELY high rate of false positives in this test. I believe she said out of the children that were referred for sweat tests, 95% were negative for CF. Just thought you'd want to know this info.

 

[zoe4life]

Hi there...I just wanted to tell you that my daughers doctor is the dr that got the newborn screening to be mandatory in the state of Fl. a couple of years ago. Her and I were discussing the test outcomes. There is an EXTREMELY high rate of false positives in this test. I believe she said out of the children that were referred for sweat tests, 95% were negative for CF. Just thought you'd want to know this info.

 

[zoe4life]

Hi there...I just wanted to tell you that my daughers doctor is the dr that got the newborn screening to be mandatory in the state of Fl. a couple of years ago. Her and I were discussing the test outcomes. There is an EXTREMELY high rate of false positives in this test. I believe she said out of the children that were referred for sweat tests, 95% were negative for CF. Just thought you'd want to know this info.

 

[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