Could this be CF?

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karine77
New Member


Date Joined Sep 2008
Total Posts : 2
   Posted 9/22/2008 8:21 AM (GMT -7)   
Hi everyone...I'm new on this forum...just trying to get a little more info on CF (oh and I speak french so there might be a few mistakes...sorry)
I have a daughter that is always sick.....could this be cf? here is what is wrong for now....
 
she is 13 months old and already was hospitalized 4 times for broncholitis. they say she has asthma but cannot really diagnose her until she is 2. she is almost always put on steroids and inhalators
she was born with thick mucus (she stayed 4 days in the nicu just getting rid of it) and almost always has had mucus since birth. she doesn't cough that much except when she is sick. she often wheezes and you can just here the mucus in her chest
she has had alot of digestive issues as well. we though she had celiac disease for months. she poos alot, she stopped gaining weight at about 9 months (she has dropped 25% in the growth chart for weight but is still just below the 75th percentile which is still very good) her height chart is right on track. she eats like an ogre. she has a big belly, she has gas alot (that was a real problem a few months ago...she had abdominal pain and gas that would wake her up many times at night for months)
she is having blue spells especially when she is cold (something like raynaud's phenomenon) but her O2 sat is fine (not sure if this has anything to do with it though....but it started this summer and none of my other 3 kids ever had this)
 
the thing is....there is no salty taste on her skin and no one in both our families have CF
 
should I get her tested?
 
thanks for your opinion!
 

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 9/22/2008 8:40 AM (GMT -7)   
In my opinion, yes get her tested.

She is showing some symptoms of CF, and if it is the case, you want too catch it as early as possible. IT sounds like you've really done your research into things it could be. Try not too worry about those things for now, get your daughter tested and then go on from there.

CF very rarely shows up in family history. The only person in my family I know has it, is my brother, my sister managed too escape it. Noone else, as far back as we can follow has had CF.

Sometimes people don't desaturate in oxygen levels, this can be normal. I can be all puffed out, gasping for air, coughing my head off, nails turning blue, and my levels will stay above 95%.

With regards too pooing a lot, it matters a lot aswell what the stools are like. If they are loose, orange or yellow and greasy, then this could mean CF too.

With regards too salty taste, this is a typical sign yes, but you cannot always tell. My brothers sweat test results are on the lower end of the defintely CF scale, salt will collect in his hat sometimes, but otherwise you can't really tell. Me on the other hand am at the very high end, find salt crystalises on my arms, and I sometimes even get salty saliva. If I hold someones hand and they have cut, well they know about it pretty quickly. But as I say, my brother has never been this bad.

Get your daughter tested for your own piece of mind, and then go from there on what else could be causing the symptoms.
Best of luck, and let us know how you get on:)
Gem
 
PS, your English is excellant! Let me know if there's anything you don't understand.


Moderator of the Cystic Fibrosis Forums
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Post Edited (Darkies Gem) : 9/22/2008 9:45:39 AM (GMT-6)


karine77
New Member


Date Joined Sep 2008
Total Posts : 2
   Posted 9/22/2008 9:02 AM (GMT -7)   
thanks...

regarding my daughter's stool....they are always very abundant and loose....they don't look greasy but they look like mud...often orangy

I'll get her tested....thanks
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