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Tine73
Member since 3/06 22093 total posts
Name:
*********
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Re: Cystic Fibrosis-am I not being cautious enough?
Posted by Ang-Rich
This is the heart of your concern...as moms I think we all understand that. But like other posters above said...I would do it as well. The temporary discomfort outweighs the long term concerns. And I know you know that...you've been through so much and obviously you have your son's well-being at the top of the priority list. Talk with the ped about the facts you do have and go from there...if they push testing then you'll have to make a decision.
Parent with love and strength...it's the best we can do for them. 
I agree.
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Posted 11/4/08 3:51 PM  |
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FeliciaDP
♥
Member since 5/05 18599 total posts
Name:
Mommy
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Re: Cystic Fibrosis-am I not being cautious enough?
Posted by Ang-Rich
This is the heart of your concern...as moms I think we all understand that. But like other posters above said...I would do it as well. The temporary discomfort outweighs the long term concerns. And I know you know that...you've been through so much and obviously you have your son's well-being at the top of the priority list. Talk with the ped about the facts you do have and go from there...if they push testing then you'll have to make a decision.
Parent with love and strength...it's the best we can do for them.
ITA... well said Ang..
To the OP.. I hope all winds up well with your DS and I can't imagine how scary this feels to you. But somehow I think all will be OK pray:  
Message edited 11/4/2008 4:10:02 PM.
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| Posted 11/4/08 4:09 PM |
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imyself
Member since 10/06 2938 total posts
Name:
me
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Re: Cystic Fibrosis-am I not being cautious enough?
I was warned by my ped about the newborn testing before I had ds. They do have newer testing that is done that is too sensitive. I was warned not to freak out if anything came back positive because chances are everything is fine and it is just the stupid test that is wrong. So talk to your ped about it.
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| Posted 11/4/08 5:25 PM |
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Mommy2Boys
My Boys!!!!
Member since 6/06 14437 total posts
Name:
C
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Re: Cystic Fibrosis-am I not being cautious enough?
Posted by Tine73
Posted by Ang-Rich
This is the heart of your concern...as moms I think we all understand that. But like other posters above said...I would do it as well. The temporary discomfort outweighs the long term concerns. And I know you know that...you've been through so much and obviously you have your son's well-being at the top of the priority list. Talk with the ped about the facts you do have and go from there...if they push testing then you'll have to make a decision.
Parent with love and strength...it's the best we can do for them.
I agree.
I agree with this as well!
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| Posted 11/4/08 5:34 PM |
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Chatham-Chick
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Member since 5/05 10311 total posts
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Re: Cystic Fibrosis-am I not being cautious enough?
We went through something similar with our DS and ped.
DS tested positive for the Delta F508 mutation, which is the most common and had an elevated IRT level. Although DS showed no signs of CF, we followed through with the sweat test. The first one came back inconclusive, so we had to do a 2nd sweat test. The director of the CF center concluded that based on the results, our DS did not have CF.
The only true way for us to find out is through genetic testing.
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| Posted 11/4/08 9:56 PM |
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Re: Cystic Fibrosis-am I not being cautious enough?
They have to test b/c it's mandatory. We got the call to when Ayla was a few weeks old. I wanted to throw up. They had to wait until she was 7 weeks to give her the sweat test. It went well. It didn't hurt one bit. She slept the whole time.
My guess is that the reason his CF #'s came back slighty elevatedis all due to how little he ate in the hospital. CF is all about broken down enzymes. You said it yourself-he shows no signs of CF.
I'm sorry you have to go through this but I REALLY think it's okay.
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| Posted 11/4/08 10:43 PM |
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avamamma
My Girl
Member since 7/06 3395 total posts
Name:
Tara
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Re: Cystic Fibrosis-am I not being cautious enough?
My friend went through the same thing. She is a carrier, her DH is not.
Her sons test came back positive and she had to take him for a sweat test.
He goes to a specialist for regular check ups, but does not have the disease, but is in fact a carrier himself, if you want me to have her give you a call, fm me.
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| Posted 11/4/08 11:00 PM |
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dm24angel
Happiness
Member since 5/05 34581 total posts
Name:
Donna
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Re: Cystic Fibrosis-am I not being cautious enough?
If it were me, I would send the results to the PED and go for the test. Better safe then sorry.
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| Posted 11/4/08 11:02 PM |
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Goobster
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Member since 5/07 27557 total posts
Name:
:)
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Re: Cystic Fibrosis-am I not being cautious enough?
Posted by Chatham-Chick
We went through something similar with our DS and ped.
DS tested positive for the Delta F508 mutation, which is the most common
This is the same mutation we are aware DH has, that DD will possibly inherit as well. It is one of the most common.
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| Posted 11/4/08 11:50 PM |
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Goobster
:)
Member since 5/07 27557 total posts
Name:
:)
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Re: Cystic Fibrosis-am I not being cautious enough?
Posted by Cakes
My guess is that the reason his CF #'s came back slighty elevatedis all due to how little he ate in the hospital. CF is all about broken down enzymes. You said it yourself-he shows no signs of CF.
The drs test the newborn's blood for the actual mutated genes, not the enzymes, so not eating would honestly not cause someone to appear as if they are a carrier of a CF mutation (or even possibly have the disease). If her dr called her to say her DS may be a carrier or have the disease, it's b/c at least one gene was identified in the bloodwork (not enzymes). Anyone who comes up + for one mutated gene would be recommended to go for the sweat test (which then will test for the enzymes).
The reason for this is that they only test for most common 25 or 97 mutations when there are really over 1,000 mutations (most very rare). The sweat test is done to test the enzymes in the sweat to determine if it's just carrier status or actual CF.
Message edited 12/8/2008 10:41:05 AM.
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| Posted 11/4/08 11:55 PM |
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