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dandr10199
Grace is growing up too fast!
Member since 10/05 11561 total posts
Name:
Dina
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The pediatrician from NSUH just called...
He said that Gracie's bloodwork came back with a marker for cystic fibrosis. I completely FREAKED! He said there is a VERY SMALL chance that she would have it, but we need to do a sweat test to be sure.
So I called my pediatrican who talked to the one from the hospital. Both doctors think she is fine based on the fact that she has no symptoms of it, but we are doing the sweat test to be sure.
I asked the doctor why would this show up now??? I took all the blood tests while I was preggo and everything was fine. They said she could be a carrier of CF, if she does not have it. Plus, the blood test they use for CF can have false positives, but NYS requires that if there is a positive genetic marker that the child gets a sweat test done to determine if they have CF.
I feel better after speaking with the doctors, but I am still scared and a bit freaked out. I am trying to keep it together but I broke down before and cried. She cannot have the sweat test until she is 6 weeks old so we have to wait. The wait is what is killing me.
Has anyone else had this happen with their child? Any advice would be appreciated.
ETA: Please say prayers that Gracie is fine and this is just a marker that she is a carrier. Thanks
UPDATE: My Ob just called me back and said that my bloodwork was negative while I was pregnant. I am not a carrier and they checked for 23 mutations of CF. SO unless it is a freak mutation, Gracie should be fine, THANK GOD! We scheduled the sweat test just to be 100% certain. Looks like Dh is the carrier. Thanks for all the prayers, ladies. 
Message edited 5/30/2006 8:15:14 PM.
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Posted 5/30/06 5:10 PM  |
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sunny
Life is good!
Member since 5/05 8369 total posts
Name:
Stephanie
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Re: The pediatrician from NSUH just called...
Don't have any experience with this but
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| Posted 5/30/06 5:11 PM |
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CathyB
Member since 5/05 19403 total posts
Name:
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Re: The pediatrician from NSUH just called...
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| Posted 5/30/06 5:11 PM |
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paulandles912
My children are a blessing!
Member since 5/05 2598 total posts
Name:
Leslie
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Re: The pediatrician from NSUH just called...
I don't know too much about it, except that through blood tests it was determined that I am a CF carrier and DH is not. This meant (per the lab) that DS could not have CF, but could be a carrier.
So maybe that's all it means for Gracie hopefully.
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| Posted 5/30/06 5:13 PM |
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IrishTracy
Believe!!
Member since 5/05 15167 total posts
Name:
Tracy
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Re: The pediatrician from NSUH just called...
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| Posted 5/30/06 5:14 PM |
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yankinmanc
Happy Days!
Member since 8/05 18208 total posts
Name:
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Re: The pediatrician from NSUH just called...
I don't know anything about this either, but I hope it all works out for the best!
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| Posted 5/30/06 5:17 PM |
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dandr10199
Grace is growing up too fast!
Member since 10/05 11561 total posts
Name:
Dina
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Re: The pediatrician from NSUH just called...
Posted by paulandles912
I don't know too much about it, except that through blood tests it was determined that I am a CF carrier and DH is not. This meant (per the lab) that DS could not have CF, but could be a carrier.
So maybe that's all it means for Gracie hopefully.
I pray that this is the case for us. I am sitting here watching her sleep with tears in my eyes. Every time she makes a noise I ask myself if it was a cough, and is she coughing up phlem? What if she does have it? People with CF only live 20-30 years. The thought of her having this...
I am so on edge about this. I know the odds are in our favor and rationally I keep telling myself that the doctors were not overly concerned, and if they were they would tell me. However, I am still really worried about this.
Message edited 5/30/2006 5:22:26 PM.
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| Posted 5/30/06 5:20 PM |
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paulandles912
My children are a blessing!
Member since 5/05 2598 total posts
Name:
Leslie
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Re: The pediatrician from NSUH just called...
Posted by dandr10199
I pray that this is the case for us. I am sitting here watching her sleep with tears in my eyes. Every time she makes a noise I ask myself if it was a cough, and is she coughing up phlem? What if she does have it? People with CF only live 20-30 years. The thought of her having this...
I am so on edge about this. I know the odds are in our favor and rationally I keep telling myself that the doctors were not overly concerned, and if they were they would tell me. However, I am still really worried about this.
Understandable to be worried. I'm praying that your results come back with great news!
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| Posted 5/30/06 5:30 PM |
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trnity44
I hope you stay beautiful baby
Member since 5/05 8356 total posts
Name:
Liz
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Re: The pediatrician from NSUH just called...
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| Posted 5/30/06 5:34 PM |
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casey31
Mommy of 3!
Member since 5/05 2967 total posts
Name:
Mommy to two boys and a girl
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Re: The pediatrician from NSUH just called...
To confirm the diagnosis, your doctor will order a sweat test, a painless procedure to diagnose cystic fibrosis by measuring the amount of salt in skin sweat. In newborns, who are too tiny to make enough sweat for a sweat test, a blood test can confirm the diagnosis. Many states now routinely screen newborns for cystic fibrosis.
I just saw this on the internet- can you ask the Dr. about a blood test so you don't have to wait another 4 weeks?
It sounds like, if anything, she is just a carrier- it really sounds like the risk is VERY small. I am
for you and Gracie Dina!!
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| Posted 5/30/06 5:38 PM |
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MM2004
...
Member since 5/05 1854 total posts
Name:
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Re: The pediatrician from NSUH just called...
Something similar happen in my family. My mom is a carrier of Alpha-1 Antitrypsin Deficiency (Alpha-1). Alpha-1 is a genetic disorder that can cause liver and lung disease in children and adults and my sister and I had to get tested.
I hope everything works out with your precious little baby!
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| Posted 5/30/06 5:38 PM |
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Moehick
Ready for the sun!
Member since 5/05 30339 total posts
Name:
Properly perfect™
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Re: The pediatrician from NSUH just called...
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| Posted 5/30/06 5:38 PM |
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Anniegrl
I'm two!
Member since 5/05 4320 total posts
Name:
Ann
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Re: The pediatrician from NSUH just called...
Lots of for Gracie!
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| Posted 5/30/06 5:42 PM |
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dandr10199
Grace is growing up too fast!
Member since 10/05 11561 total posts
Name:
Dina
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Re: The pediatrician from NSUH just called...
Posted by casey31
To confirm the diagnosis, your doctor will order a sweat test, a painless procedure to diagnose cystic fibrosis by measuring the amount of salt in skin sweat. In newborns, who are too tiny to make enough sweat for a sweat test, a blood test can confirm the diagnosis. Many states now routinely screen newborns for cystic fibrosis.
I just saw this on the internet- can you ask the Dr. about a blood test so you don't have to wait another 4 weeks?
It sounds like, if anything, she is just a carrier- it really sounds like the risk is VERY small. I am
for you and Gracie Dina!!
Thanks Ariella! I will call them now and ask about this. They did a blood test in the hospital, but I doubt it is the same test. Thanks again.
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| Posted 5/30/06 5:45 PM |
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Re: The pediatrician from NSUH just called...
for Gracie!
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| Posted 5/30/06 5:45 PM |
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mommy2bella
Where does time go?
Member since 12/05 9747 total posts
Name:
Kelly
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Re: The pediatrician from NSUH just called...
How scary! I hope everything turns out OK for Gracie and that this is just a scare...lots of hugs and prayers being sent your way
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| Posted 5/30/06 6:09 PM |
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Spring Baby06
My two loves
Member since 5/05 3612 total posts
Name:
Jillian
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Re: The pediatrician from NSUH just called...
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| Posted 5/30/06 6:40 PM |
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MrsERod
Praying for Everyone.
Member since 5/05 26170 total posts
Name:
MrsERod™®
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Re: The pediatrician from NSUH just called...
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| Posted 5/30/06 6:43 PM |
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MelToddJulia
Love my Family!
Member since 7/05 29064 total posts
Name:
Mel
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Re: The pediatrician from NSUH just called...
for Gracie!!
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| Posted 5/30/06 7:16 PM |
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Eireann
Two ladies and a gentleman!
Member since 5/05 12165 total posts
Name:
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Re: The pediatrician from NSUH just called...
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| Posted 5/30/06 7:32 PM |
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MommaG
Yay Spring!
Member since 5/05 5133 total posts
Name:
Gloria
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Re: The pediatrician from NSUH just called...
This same situation happened with friends of ours - their baby had all the testing done when he was born, and one test (I believe it was CF) came back positive. They had another test done and all was fine. They were very worried just like you. Try to stay positive and not worry about something that you cannot change - chances are, everything will be fine since she is not showing any signs. Just hang in there until you can have the test done and enjoy your new daughter!!!
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| Posted 5/30/06 7:35 PM |
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Stacey1403
Where it all began....
Member since 5/05 24065 total posts
Name:
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Re: The pediatrician from NSUH just called...
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| Posted 5/30/06 7:36 PM |
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JavaJunkie
Someday, Somehow
Member since 6/05 5857 total posts
Name:
Lois
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Re: The pediatrician from NSUH just called...
I just went through this with our DS. He had two sweat tests, one at 3-4 weeks and one at 5, we weren't told to wait until 6 weeks. They wound up ruling out him having CF but we are going back to have genectic counceling so they can see if he is a carrier. hang in there, it isn't easy I know. If you have any questions feel free to ask.
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| Posted 5/30/06 7:59 PM |
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MrsJ
I love my Katie Bug
Member since 5/05 11357 total posts
Name:
Kathy
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Re: The pediatrician from NSUH just called...
I dont know anything about this but to you and DH and Gracie!
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| Posted 5/30/06 8:09 PM |
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dandr10199
Grace is growing up too fast!
Member since 10/05 11561 total posts
Name:
Dina
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Re: The pediatrician from NSUH just called...
BUMP for update
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| Posted 5/30/06 8:15 PM |
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