Reply Hey Mom! Learn more about the Gerber Life Insurance Grow-Up Plan!
 
Thread Tools Display Modes
Old 12-15-2008, 12:35 PM   #1
nikkipainter's Avatar
nikkipainter
Registered Users
seller
 
Join Date: Jul 2008
Location: WV, USA
Posts: 325
My Mood:
Question Pos CF test, anyone?

Today I got a call from the dr. that my 2wk old baby girl Irelynn's PKU results were positive for Cystic Fibrosis. She has to be tested more next monday to see if she indeed has it, a sweat test is what will be done to confirm it. I'm already suffering PPD and now this is just way too much.

Have any of you ever had this happen and the end result be negative? Does anyone here have a newborn with CF? I guess I just need reassurance that it might be ok, prayers if you pray too please. Thanks!

Advertisement

__________________
♥ ♥ Nikki Painter ♥ ♥
Homeschool Mom to Emira(00), Ainsley(07), Irelynn(08) & Lincoln arriving 10/24
nikkipainter is offline   Reply With Quote
Old 12-15-2008, 12:43 PM   #2
emilykaysmommy
Registered Users
seller
 
Join Date: Jul 2007
Posts: 775
Re: Pos CF test, anyone?

Just wanted to offer and you and your DD will be in my thoughts...
__________________
Megan: wife to Desmond (6.25.05), mama to Emily Kay (12.2.06) and Zane Alexander (9.13.10)
emilykaysmommy is offline   Reply With Quote
Old 12-15-2008, 12:54 PM   #3
Rodeo Mama's Avatar
Rodeo Mama
Registered Users
seller
 
Join Date: Nov 2007
Location: Michigan
Posts: 734
My Mood:
Re: Pos CF test, anyone?

We had a similar experience w/ DS. His PKU came back positive for Maple Syrup Urine Disease. We had to take him in for a blood draw and do a really detailed family history. Anyway, the second blood draw came back negative. It is so scary to think something is wrong whether it ends up being true or not. We will be praying for you as you wait for results.
__________________
Amanda, wife to Andrew, mama to Dale , Olivia , Wyatt and Nora . Baby #5 due in late April.
Rodeo Mama is offline   Reply With Quote
Old 12-15-2008, 01:11 PM   #4
meghann8's Avatar
meghann8
Registered Users
seller
 
Join Date: Dec 2006
Location: Galactic Sector ZZ9 Plural Z Alpha
Posts: 2,299
My Mood:
Re: Pos CF test, anyone?

My youngest had a positive for something on the PKU, can't remember what. Her repeat blood draw showed a negative though. Hopefully your dd's sweat test goes fine!
__________________
MeghannArmy wife and mommy to:
Ryan (8), Lindsay (6), Logan (4), and Hannah (2 )
Sodaho Photography
meghann8 is offline   Reply With Quote
Old 12-15-2008, 03:15 PM   #5
momof3boys1girl
No Longer Here
 
Join Date: Jun 2007
Posts: 21,967
My Mood:
Re: Pos CF test, anyone?

prayers everything is ok
momof3boys1girl is offline   Reply With Quote
Old 12-15-2008, 04:23 PM   #6
nikkipainter's Avatar
nikkipainter
Registered Users
seller
 
Join Date: Jul 2008
Location: WV, USA
Posts: 325
My Mood:
Re: Pos CF test, anyone?

Thanks everyone!! I appreciate all your thoughts and prayers!
__________________
♥ ♥ Nikki Painter ♥ ♥
Homeschool Mom to Emira(00), Ainsley(07), Irelynn(08) & Lincoln arriving 10/24
nikkipainter is offline   Reply With Quote
Old 12-15-2008, 05:37 PM   #7
Mom24Babes's Avatar
Mom24Babes
Registered Users
seller
 
Join Date: Oct 2008
Location: Telford, TN
Posts: 2,557
My Mood:
Re: Pos CF test, anyone?

__________________
Becca~Helpmeet to Jerm
Homeschooling mama to
Rachelle~9 Issac~7 Ethan~5 Lucas 2
I'm a consultant for The All Natural Face! Enter Consultant # 2107
Mom24Babes is offline   Reply With Quote
Old 12-15-2008, 07:00 PM   #8
amrijane128's Avatar
amrijane128
Registered Users
seller
 
Join Date: Mar 2007
Location: Colorado
Posts: 2,401
Re: Pos CF test, anyone?

I'm sending prayers your way mama.
__________________
Amri- Lovin' my little girl Indica 12.08.06 and brand new baby boy Kytan 04.04.10
amrijane128 is offline   Reply With Quote
Old 12-16-2008, 08:33 AM   #9
indysteffanie's Avatar
indysteffanie
Registered Users
seller
 
Join Date: Apr 2006
Location: Some where out there....
Posts: 1,218
My Mood:
Re: Pos CF test, anyone?

im so sorry momma...

there are false positives with the newborn screen, but in the event that her sweat test comes positive i just want you to know that there is no reason to lose hope.


my almost 7 year old has CF. The things they are doing for CF these days are amazing. I wont go into much detail here, but please know you can pm me if she does end up positive and i can answer as many and all ?s you have.

its a rough diagnosis, and i wont lie...i still sometimes cry myself to sleep...but its so much better and so much more encouraging than it used to be.

in the meantime im praying it was a false pos!
__________________

Steffanie: momma to Brennan(13) Dillon (7) with cf , Ashlyn (6) , TJ (4) and Anderson(1) , born at 29 weeks
indysteffanie is offline   Reply With Quote
Old 12-16-2008, 01:07 PM   #10
indysteffanie's Avatar
indysteffanie
Registered Users
seller
 
Join Date: Apr 2006
Location: Some where out there....
Posts: 1,218
My Mood:
Re: Pos CF test, anyone?

i wanted to that a good way to tell too is to lick her...i know it sounds weird...

but cf kids spill lots of salt in their sweat, (that is what the sweat test is looking for) my CFer tastes like a salt lick.

im not sure if this would work in a teeny infant, as im not sure if they would sweat enough.
__________________

Steffanie: momma to Brennan(13) Dillon (7) with cf , Ashlyn (6) , TJ (4) and Anderson(1) , born at 29 weeks
indysteffanie is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

Copyright 2005 - 2014 Escalate Media. All Rights Reserved.