Son had abnormal Newborn test.. Please Read

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
 
C

ConnorColton

New member
When my first son with cf was born we knew something was wrong. He was so skinny, he pooped so so much and his poop was smelly and greasy, he threw up constantly and at etons. He had no lung isssues in the first year or so.There are many different gene mutations related with cf, and even they can vary from from mild (some even "atypical") to severe types of cf. It deffinetly ranges from person to person. But we got Connor's newborn screening test results back and went in for a sweet test three days later. I wish you and your family well. God bless that baby. Good Luck. XOXO
 
C

ConnorColton

New member
When my first son with cf was born we knew something was wrong. He was so skinny, he pooped so so much and his poop was smelly and greasy, he threw up constantly and at etons. He had no lung isssues in the first year or so.There are many different gene mutations related with cf, and even they can vary from from mild (some even "atypical") to severe types of cf. It deffinetly ranges from person to person. But we got Connor's newborn screening test results back and went in for a sweet test three days later. I wish you and your family well. God bless that baby. Good Luck. XOXO
 
C

ConnorColton

New member
When my first son with cf was born we knew something was wrong. He was so skinny, he pooped so so much and his poop was smelly and greasy, he threw up constantly and at etons. He had no lung isssues in the first year or so.There are many different gene mutations related with cf, and even they can vary from from mild (some even "atypical") to severe types of cf. It deffinetly ranges from person to person. But we got Connor's newborn screening test results back and went in for a sweet test three days later. I wish you and your family well. God bless that baby. Good Luck. XOXO
 
M

MIZZVIKVIK

New member
Well I noticed he is not pooping regularly more like every 3 days but the last fee have been very loose but I dont know what greasy stools look like,, My son was born 6lbs 15oz.. he is gaining suffiecient weight I can tell just by clothing fits him now that didnt fit him 2 weeks ago when I brought him home... I guess my best bet would be just to wait it out but its such a frusterating process since no one wants to inform me of anything until I go for the test.
 
M

MIZZVIKVIK

New member
Well I noticed he is not pooping regularly more like every 3 days but the last fee have been very loose but I dont know what greasy stools look like,, My son was born 6lbs 15oz.. he is gaining suffiecient weight I can tell just by clothing fits him now that didnt fit him 2 weeks ago when I brought him home... I guess my best bet would be just to wait it out but its such a frusterating process since no one wants to inform me of anything until I go for the test.
 
M

MIZZVIKVIK

New member
Well I noticed he is not pooping regularly more like every 3 days but the last fee have been very loose but I dont know what greasy stools look like,, My son was born 6lbs 15oz.. he is gaining suffiecient weight I can tell just by clothing fits him now that didnt fit him 2 weeks ago when I brought him home... I guess my best bet would be just to wait it out but its such a frusterating process since no one wants to inform me of anything until I go for the test.
 
A

AleksandraKaczynska

New member
Hi, try not to worry so much.... <img src="i/expressions/face-icon-small-sad.gif" border="0">
Greasy means like the poop is streaked with oil.A baby on mother milk can have a poop even to one per week! and it's considered normal.

The screening test is just a way to find children who maybe at risk of having this - and some other illness.
It's not a diagnosis. That is why no doc will talk to you. They can only say : wait.
Most test come negative.

Some mutations of cf have no symptoms - even till you're grown up - some are mild.
The sweat test - apart from your frustration - is not stressfull for your baby - nor will it hurt. The answere will be right away. According to amount of salt in sweat you'll get an answere: no cf, maybe <img src="i/expressions/face-icon-small-sad.gif" border="0"> and yes.
The number of Cl- < 40 mmol/l is no
40 to 60 is - maybe - needs more test
and =>60 is yes.
(for babies) - that is how I remember - but you can ask when the test starts.

I have been there (where you are) and most of moms here.
My Joanna had no symptoms and has none still - but for the sweat tests - she is 3. Her first sweat test - when she was about 1,5 months was exactly 60. So the doc said yes. We dissbelieved. But her genetic test came out clear. And so did ours - my husbands and mine - we are both carriers and had no history of cf in our families. After anger and sadness came acceptance and now we are learning as much as we can. Many people helped us and still do.

Joanna is like any other 3 year old. Happy. Running around, doing mischieff. We go camping, to swimming lessons and gimnsatics. We don't go to kindergarden - but soon this will start since we have to send kids here to school - the first kindergarden year - at age of 5. I hope I can postpone this. She doesn't get sick almost at all.
As I look at my friend's kids around - many have problems with their newborns - and the worst are - when they don't know what's going on - just doing tests - and the baby is sick all the time.

You have a wonderfull baby - be happy and don't go alone for the test - find someone close to you - someone who'll hold you by the hand and even do all the talking for you.
Don't read too much about cf - wait for the test results.
Good luck
 
A

AleksandraKaczynska

New member
Hi, try not to worry so much.... <img src="i/expressions/face-icon-small-sad.gif" border="0">
Greasy means like the poop is streaked with oil.A baby on mother milk can have a poop even to one per week! and it's considered normal.

The screening test is just a way to find children who maybe at risk of having this - and some other illness.
It's not a diagnosis. That is why no doc will talk to you. They can only say : wait.
Most test come negative.

Some mutations of cf have no symptoms - even till you're grown up - some are mild.
The sweat test - apart from your frustration - is not stressfull for your baby - nor will it hurt. The answere will be right away. According to amount of salt in sweat you'll get an answere: no cf, maybe <img src="i/expressions/face-icon-small-sad.gif" border="0"> and yes.
The number of Cl- < 40 mmol/l is no
40 to 60 is - maybe - needs more test
and =>60 is yes.
(for babies) - that is how I remember - but you can ask when the test starts.

I have been there (where you are) and most of moms here.
My Joanna had no symptoms and has none still - but for the sweat tests - she is 3. Her first sweat test - when she was about 1,5 months was exactly 60. So the doc said yes. We dissbelieved. But her genetic test came out clear. And so did ours - my husbands and mine - we are both carriers and had no history of cf in our families. After anger and sadness came acceptance and now we are learning as much as we can. Many people helped us and still do.

Joanna is like any other 3 year old. Happy. Running around, doing mischieff. We go camping, to swimming lessons and gimnsatics. We don't go to kindergarden - but soon this will start since we have to send kids here to school - the first kindergarden year - at age of 5. I hope I can postpone this. She doesn't get sick almost at all.
As I look at my friend's kids around - many have problems with their newborns - and the worst are - when they don't know what's going on - just doing tests - and the baby is sick all the time.

You have a wonderfull baby - be happy and don't go alone for the test - find someone close to you - someone who'll hold you by the hand and even do all the talking for you.
Don't read too much about cf - wait for the test results.
Good luck
 
A

AleksandraKaczynska

New member
Hi, try not to worry so much.... <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />Greasy means like the poop is streaked with oil.A baby on mother milk can have a poop even to one per week! and it's considered normal.
<br />
<br />The screening test is just a way to find children who maybe at risk of having this - and some other illness.
<br />It's not a diagnosis. That is why no doc will talk to you. They can only say : wait.
<br />Most test come negative.
<br />
<br />Some mutations of cf have no symptoms - even till you're grown up - some are mild.
<br />The sweat test - apart from your frustration - is not stressfull for your baby - nor will it hurt. The answere will be right away. According to amount of salt in sweat you'll get an answere: no cf, maybe <img src="i/expressions/face-icon-small-sad.gif" border="0"> and yes.
<br />The number of Cl- < 40 mmol/l is no
<br />40 to 60 is - maybe - needs more test
<br />and =>60 is yes.
<br />(for babies) - that is how I remember - but you can ask when the test starts.
<br />
<br />I have been there (where you are) and most of moms here.
<br />My Joanna had no symptoms and has none still - but for the sweat tests - she is 3. Her first sweat test - when she was about 1,5 months was exactly 60. So the doc said yes. We dissbelieved. But her genetic test came out clear. And so did ours - my husbands and mine - we are both carriers and had no history of cf in our families. After anger and sadness came acceptance and now we are learning as much as we can. Many people helped us and still do.
<br />
<br />Joanna is like any other 3 year old. Happy. Running around, doing mischieff. We go camping, to swimming lessons and gimnsatics. We don't go to kindergarden - but soon this will start since we have to send kids here to school - the first kindergarden year - at age of 5. I hope I can postpone this. She doesn't get sick almost at all.
<br />As I look at my friend's kids around - many have problems with their newborns - and the worst are - when they don't know what's going on - just doing tests - and the baby is sick all the time.
<br />
<br />You have a wonderfull baby - be happy and don't go alone for the test - find someone close to you - someone who'll hold you by the hand and even do all the talking for you.
<br />Don't read too much about cf - wait for the test results.
<br />Good luck
<br />
 
M

MIZZVIKVIK

New member
Well, my son is on formula.. so I assumed his stools would come more regular but my daughter had problems getting constipated and had to switch formulas.. it could be just about anything but since I dont know I am constantly associating his symptoms with CF... But I am just going to take it day by day and try not to worry so much its not going to do me any good until I get some kind of results..
 
M

MIZZVIKVIK

New member
Well, my son is on formula.. so I assumed his stools would come more regular but my daughter had problems getting constipated and had to switch formulas.. it could be just about anything but since I dont know I am constantly associating his symptoms with CF... But I am just going to take it day by day and try not to worry so much its not going to do me any good until I get some kind of results..
 
M

MIZZVIKVIK

New member
Well, my son is on formula.. so I assumed his stools would come more regular but my daughter had problems getting constipated and had to switch formulas.. it could be just about anything but since I dont know I am constantly associating his symptoms with CF... But I am just going to take it day by day and try not to worry so much its not going to do me any good until I get some kind of results..
 
S

sdelorenzo

Guest
Congratulations on the birth of your son! I know how stressed you must be. I had to wait a few weeks to find out if my last two kids had cf or not. It is SOOO hard to tell. I already had two older kids with cf, so I knew all about the symptoms. Just newborns are so hard to figure out. My husband and I went back and forth last month before we got my the wonderful news about our daughter not having cf. We thought she tasted salty sometimes. Maybe there was a little oil in the stool. I thought my newborn daughter was making a weird wheezing sound too. But everything was fine, she is not even a carrier.

Dec. 6 is a long time to have to wait. There are ways to get in sooner. Call the CF center (Pulmonology at the Children's hospital). Ask to speak with the head of the cf clinic's nurse. This nurse is most likely able to get sweat test scheduled within a few days. You will probably get a voice mail. Leave a message explaining your situation and you are desperate to get an answer now, NOT in 3 or 4 weeks. Ask if they can help you get a sweat test scheduled sooner. Now they might not be able to help you since you aren't a patient of theirs, but it worth a try!

I remember before my daughter who is 9 was diagnosed she was having about 15 stools a day as a newborn. It seemed like she wasn't digesting anything and she wasn't. She didn't gain any weight her first 6 weeks. It looked like someone poured oil in the diaper.

Infants stools are not firm. They are very loose and watery regardless of cf, so your son sounds normal.
Sharon, mom of Sophia, 9 and Jack, 7 both with cf, Grant, 21 months and Paige, 6 weeks both without cf
 
S

sdelorenzo

Guest
Congratulations on the birth of your son! I know how stressed you must be. I had to wait a few weeks to find out if my last two kids had cf or not. It is SOOO hard to tell. I already had two older kids with cf, so I knew all about the symptoms. Just newborns are so hard to figure out. My husband and I went back and forth last month before we got my the wonderful news about our daughter not having cf. We thought she tasted salty sometimes. Maybe there was a little oil in the stool. I thought my newborn daughter was making a weird wheezing sound too. But everything was fine, she is not even a carrier.

Dec. 6 is a long time to have to wait. There are ways to get in sooner. Call the CF center (Pulmonology at the Children's hospital). Ask to speak with the head of the cf clinic's nurse. This nurse is most likely able to get sweat test scheduled within a few days. You will probably get a voice mail. Leave a message explaining your situation and you are desperate to get an answer now, NOT in 3 or 4 weeks. Ask if they can help you get a sweat test scheduled sooner. Now they might not be able to help you since you aren't a patient of theirs, but it worth a try!

I remember before my daughter who is 9 was diagnosed she was having about 15 stools a day as a newborn. It seemed like she wasn't digesting anything and she wasn't. She didn't gain any weight her first 6 weeks. It looked like someone poured oil in the diaper.

Infants stools are not firm. They are very loose and watery regardless of cf, so your son sounds normal.
Sharon, mom of Sophia, 9 and Jack, 7 both with cf, Grant, 21 months and Paige, 6 weeks both without cf
 
S

sdelorenzo

Guest
Congratulations on the birth of your son! I know how stressed you must be. I had to wait a few weeks to find out if my last two kids had cf or not. It is SOOO hard to tell. I already had two older kids with cf, so I knew all about the symptoms. Just newborns are so hard to figure out. My husband and I went back and forth last month before we got my the wonderful news about our daughter not having cf. We thought she tasted salty sometimes. Maybe there was a little oil in the stool. I thought my newborn daughter was making a weird wheezing sound too. But everything was fine, she is not even a carrier.
<br />
<br />Dec. 6 is a long time to have to wait. There are ways to get in sooner. Call the CF center (Pulmonology at the Children's hospital). Ask to speak with the head of the cf clinic's nurse. This nurse is most likely able to get sweat test scheduled within a few days. You will probably get a voice mail. Leave a message explaining your situation and you are desperate to get an answer now, NOT in 3 or 4 weeks. Ask if they can help you get a sweat test scheduled sooner. Now they might not be able to help you since you aren't a patient of theirs, but it worth a try!
<br />
<br />I remember before my daughter who is 9 was diagnosed she was having about 15 stools a day as a newborn. It seemed like she wasn't digesting anything and she wasn't. She didn't gain any weight her first 6 weeks. It looked like someone poured oil in the diaper.
<br />
<br />Infants stools are not firm. They are very loose and watery regardless of cf, so your son sounds normal.
<br />Sharon, mom of Sophia, 9 and Jack, 7 both with cf, Grant, 21 months and Paige, 6 weeks both without cf
 
A

amber682

New member
First off, Congratulations on your new baby boy!

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.

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">
 
A

amber682

New member
First off, Congratulations on your new baby boy!

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.

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">
 
You must log in or register to reply here.
Top