Abnormal 2nd Baby Screening Result

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seanyb719

Guest
Hi all,
Just wanted to hear your thoughts on our situation.
Our daughter was born 29/Jan/12 and had a IRT score of 87. We had a second test at 10 days old and her score came out to be abnormal at 72. I understand in Washington State the range is up to 70.
We have gone in for a retest and are now having to wait 20 days for the results. I couldnt wait this long so have booked in for a sweat test and the childrens hospital on Monday.
So far she seems to have no symptoms but of course from research I know this may not mean anything.
Has anyone on here had a situation like ours? 3 days away for this test seems so long :-( Fingers crossed to you all for negative results. This has ceratinly been an eye opener!
 
S

seanyb719

Guest
Hi all,
Just wanted to hear your thoughts on our situation.
Our daughter was born 29/Jan/12 and had a IRT score of 87. We had a second test at 10 days old and her score came out to be abnormal at 72. I understand in Washington State the range is up to 70.
We have gone in for a retest and are now having to wait 20 days for the results. I couldnt wait this long so have booked in for a sweat test and the childrens hospital on Monday.
So far she seems to have no symptoms but of course from research I know this may not mean anything.
Has anyone on here had a situation like ours? 3 days away for this test seems so long :-( Fingers crossed to you all for negative results. This has ceratinly been an eye opener!
 
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kitomd21

New member
Hi there - congrats on the birth of your daughter! I'm sorry that you're going through such worry!

I don't actually know the results of our daughter's IRT...all I know is that it was elevated so they sent the sample out for genetic testing. We're in CA - they never asked for a second sample. We didn't have to do sweat testing because we knew the genetic results. In addition, my understanding is that a sweat test is likely to be inaccurate on an infant - that is to say, especially a newborn. The testing center was going to perform one on our daughter (before the blood test came back) but the technician actually sent us away because our daughter was too small.

Let us know the result! Either way, glad to have you here - but sorry you have to be here...if that makes sense! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

kitomd21

New member
Hi there - congrats on the birth of your daughter! I'm sorry that you're going through such worry!

I don't actually know the results of our daughter's IRT...all I know is that it was elevated so they sent the sample out for genetic testing. We're in CA - they never asked for a second sample. We didn't have to do sweat testing because we knew the genetic results. In addition, my understanding is that a sweat test is likely to be inaccurate on an infant - that is to say, especially a newborn. The testing center was going to perform one on our daughter (before the blood test came back) but the technician actually sent us away because our daughter was too small.

Let us know the result! Either way, glad to have you here - but sorry you have to be here...if that makes sense! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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seanyb719

Guest
From what I understood, the sweat test is accurate after the newborn is more than 2 weeks. She'll be just over 6 weeks on Monday. That's just from what I read and what the CF specialist centre have told us.

The doctor didn't even want to set up the sweat test yet since he seems confused that a test would be ok and then the next come out slightly above the threshold. I guess he wants to double check these results. However, there was no way I was waiting 20 days for the results to come back. I'd rather just know.

It's funny - there are plenty of States here where that score would be considered OK. I guess that helps ease the worry slightly but there is no way I am taking a chance.

I'll let you know the results on Monday. And thank you for the response and kind words.
 
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seanyb719

Guest
From what I understood, the sweat test is accurate after the newborn is more than 2 weeks. She'll be just over 6 weeks on Monday. That's just from what I read and what the CF specialist centre have told us.

The doctor didn't even want to set up the sweat test yet since he seems confused that a test would be ok and then the next come out slightly above the threshold. I guess he wants to double check these results. However, there was no way I was waiting 20 days for the results to come back. I'd rather just know.

It's funny - there are plenty of States here where that score would be considered OK. I guess that helps ease the worry slightly but there is no way I am taking a chance.

I'll let you know the results on Monday. And thank you for the response and kind words.
 
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seanyb719

Guest
Just to add to my original post. The first test came out negative since the cut off is 100. Then after 2 weeks here the score should read less than 70. She was tested at 9 days so maybe it would have been lower had she been given the extra days.

This of course is just me trying to tell myself everything will be ok. Fingers crossed.
 
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seanyb719

Guest
Just to add to my original post. The first test came out negative since the cut off is 100. Then after 2 weeks here the score should read less than 70. She was tested at 9 days so maybe it would have been lower had she been given the extra days.

This of course is just me trying to tell myself everything will be ok. Fingers crossed.
 
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Anomie

New member
Our daughter's first test was 120 and her second was 58. This caused her to be mis-diagnosed until the age of 4 so I would definitely get the sweat test done!
 
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Anomie

New member
Our daughter's first test was 120 and her second was 58. This caused her to be mis-diagnosed until the age of 4 so I would definitely get the sweat test done!
 
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seanyb719

Guest
We have full intentions to get the sweat test done. We get the results on the same day too. I'd just rather know. Still no real signs of CF, although she is a snacker. We got worried because she started spitting up a little more but realised it was becuase we changed her food back to the normal Similac. She's back on the sensitive now and doesn;t have that issue. She is certainly thriving though. 6 weeks old and weighs 12lb. Was 8lb at birth. She's also in the 98th percentile for her height.

Fingers crossed - she's such a sweet little thing. Thank you all so much for your input. I will update the results for sure.
 
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seanyb719

Guest
We have full intentions to get the sweat test done. We get the results on the same day too. I'd just rather know. Still no real signs of CF, although she is a snacker. We got worried because she started spitting up a little more but realised it was becuase we changed her food back to the normal Similac. She's back on the sensitive now and doesn;t have that issue. She is certainly thriving though. 6 weeks old and weighs 12lb. Was 8lb at birth. She's also in the 98th percentile for her height.

Fingers crossed - she's such a sweet little thing. Thank you all so much for your input. I will update the results for sure.
 
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Anomie

New member
My daughter was the same way. She was fussy as a baby and was in the 90th percentile until it showed up on a check up at the age of 4 that she hadn't gained any weight in a year.

We went through all this stuff with food and milk allergies and asthma with the doctors until she was finally hospitalized 3 times in a row for pneumonia that wouldn't go away.

Her asthma specialist finally ordered a sweat test and it came back positive for CF. 120 I believe. The mis-diagnosis was the worse thing because by the time she was seen by the CF team she was already culturing 3 strains of pseudomonas as well as aspergillus and has bronchiectasis.

The symptoms just came on so slowly and they never informed us that she had tested positive for it once at birth. If only we had known we could have given her such a better start in life.
 
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Anomie

New member
My daughter was the same way. She was fussy as a baby and was in the 90th percentile until it showed up on a check up at the age of 4 that she hadn't gained any weight in a year.

We went through all this stuff with food and milk allergies and asthma with the doctors until she was finally hospitalized 3 times in a row for pneumonia that wouldn't go away.

Her asthma specialist finally ordered a sweat test and it came back positive for CF. 120 I believe. The mis-diagnosis was the worse thing because by the time she was seen by the CF team she was already culturing 3 strains of pseudomonas as well as aspergillus and has bronchiectasis.

The symptoms just came on so slowly and they never informed us that she had tested positive for it once at birth. If only we had known we could have given her such a better start in life.
 
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Anomie

New member
From the way I understand it your baby shouldn't have CF. The first test is prone to false positives and the second test can have false positives and false negatives. Thats what happened with my daughter is that she had a true positive then a false negative. I'm not 100% sure since I've only heard this but I think your daughter probably had a true negative followed by a false positive which was only slightly elevated. Still double check everything but I think she'll be ok. =)
 
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Anomie

New member
From the way I understand it your baby shouldn't have CF. The first test is prone to false positives and the second test can have false positives and false negatives. Thats what happened with my daughter is that she had a true positive then a false negative. I'm not 100% sure since I've only heard this but I think your daughter probably had a true negative followed by a false positive which was only slightly elevated. Still double check everything but I think she'll be ok. =)
 
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Jessesmom

New member
IRT levels in newborns can be elevated for a number of reasons, like stressful birth.
My son's IRT was quite high, yet genetic test results showed he's only a CF carrier. I would get the sweat test done, but get the genetic testing as well!
 
J

Jessesmom

New member
IRT levels in newborns can be elevated for a number of reasons, like stressful birth.
My son's IRT was quite high, yet genetic test results showed he's only a CF carrier. I would get the sweat test done, but get the genetic testing as well!
 
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