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Cystic fibrosis???

Posted by on May. 24, 2010 at 7:36 PM
  • 74 Replies
So my dd had a doctors appointment today for shots well I mentioned to the doctor she had a bad sweating problem & showed him a picture of what my bed looked like after she woke up from a nap. He asked me if she ever tasted salty when I kissed her? And I said yes sometimes.. Well he told me it could be cystic fibrosis & I don't know much about cystic fibrosis but that brought tears to my eyes because I know it's not good.. Well he told me we'd watch it before we jumped to any conclusions well after that I started freaking out. Sure enough I get on my iPhone & start researching haha. Well my daughter has a HUGE stomach it's very round & she always seems constipated but when it comes out it's runny & she is very and I mean VERY gassy.. I have never seen a baby fart as much as her.. So now I am freaking out because of my research I found on cystic fibrosis.. I'm here at work & can't even concentrate on work because all I can think about is my daughter being sick :(

Btw my daughter had RSV whenever she was a month old & she also had pnuemonia & bronchitis then too.. And ever since then her breathing has never been the same.. Some days she wheezes(normally when her allergies act up) and some days she is fine. Let me know what to expect with testing & if she does have it. I want to know the good, the bad, and the ugly.. &if she does have it will all of my children have it or what??
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by on May. 24, 2010 at 7:36 PM
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Replies (1-10):
4grlshelp
by on May. 24, 2010 at 7:37 PM

JUST GO TO GOOGLE.COM AND SEARCH IT THERE ARE ALOT OF GOOD ARTICLES AND INFORMATION OUT I HAVE IT AND THATS WHERE I LEARNED ABOUT IT  GOOD LUCK

xXxLillithxXx
by on May. 24, 2010 at 7:41 PM

I was worried about my son having CF as well. I'm getting a test done in july although he has never had breathing problems just abnormal blood work. I know how you feel I've spent alot of time freaking out about it as well. Schedule an appointment and ask for a sweat test thats all you can do and CF is confirmed with a blood test after the sweat test or so I believe. I'll be thinking about you hope everything turns out okay!

xXxLillithxXx
by on May. 24, 2010 at 7:42 PM

 Oh also I'd like to add CF isn't as bad as it was years and years ago...Theres been alot of research and improvements in treatments through out the years.

KBM99
by on May. 24, 2010 at 7:42 PM
That's where I found out a lot of my information.. But I didn't know if that was a good resource.. I've been sooo... Stressed out lately.. My son is going through therapy because they might be diagnosing him with speech delay or autism & now a month 1/2 later my daughter night have something wrong.. I never realized how stressful it could be until now :(


Quoting 4grlshelp:

JUST GO TO GOOGLE.COM AND SEARCH IT THERE ARE ALOT OF GOOD ARTICLES AND INFORMATION OUT I HAVE IT AND THATS WHERE I LEARNED ABOUT IT  GOOD LUCK


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KBM99
by on May. 24, 2010 at 7:44 PM
That is what I have been reading.. & my mom did tell me when she was in school 20 years ago it was more common for people to die from it but that now days it's not as common..


Quoting xXxLillithxXx:

 Oh also I'd like to add CF isn't as bad as it was years and years ago...Theres been alot of research and improvements in treatments through out the years.


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KBM99
by on May. 24, 2010 at 7:46 PM
Do you know about how much this will cost you?? The testing for cf? I will pay whatever but I just want to be prepared..


Quoting xXxLillithxXx:

I was worried about my son having CF as well. I'm getting a test done in july although he has never had breathing problems just abnormal blood work. I know how you feel I've spent alot of time freaking out about it as well. Schedule an appointment and ask for a sweat test thats all you can do and CF is confirmed with a blood test after the sweat test or so I believe. I'll be thinking about you hope everything turns out okay!


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bubbasmom0917
by on May. 24, 2010 at 7:46 PM

there is a simple test they can do. it is sorta like a watchband they put around the arm. bubba had to drink a lot of water before the test. have them do the test and find out.

KBM99
by on May. 24, 2010 at 7:47 PM
Well my daughter is only 6 months old so idk if they would do the watch testing or what??


Quoting bubbasmom0917:

there is a simple test they can do. it is sorta like a watchband they put around the arm. bubba had to drink a lot of water before the test. have them do the test and find out.


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zolanmel
by on May. 24, 2010 at 7:49 PM

wow. my daughter has had asperation pneumonia at least twice maybe a third time this month . shes had rsv and Is now diagnosed with Asthma . her brathing is off. 

she does everythign u have said here.

she was tested for CF at 6 months old she came out NEG. she had no problem sweating for the test. she stayed constiapted. (still does) has a nice lovely round bloated belly half the time.  has the lung conditions gets sick easily which turns to some kind of infection. gassy. refluxy. she had all the signs of CF .Even  CP! but everythign is neg.

I would ask for a sweat test first! second dont read  on the internet unless she is diagnosed!!!  Demand the test!! even if u have to switch doctors DEMAND that test get done! early intervention is the best.

xXxLillithxXx
by on May. 24, 2010 at 7:49 PM

 I am not sure about how much it costs. My son is on medicaid. BUT I'm sure its about the same as blood tests... if not cheaper. I spent 140 bucks on kadens blood tests once.

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