First signs of CF?

Alyssa

New member
CF symptoms can show up anytime from in the womb (blockage shows up on ultrasound) to someone in there 40's (a man with fertility problems gets genetic testing.... aw ha! That's why he has all those sinus & pneumonia problems)

My daughter started having symptoms at 5 years old, my son is 20 years old and hasn't really shown any (my kids are not typical cases though)

If you feel like it, read my first entry of my blog page (link in my signature line) It also gives some good info about sweat test numbers.... be sure to ask what your child's number is... do not just let them tell you negative and forget about it. If it's anywhere in the 30's keep pushing for more testing.

Best wishes, and be sure to tell us what happens!
 

Alyssa

New member
CF symptoms can show up anytime from in the womb (blockage shows up on ultrasound) to someone in there 40's (a man with fertility problems gets genetic testing.... aw ha! That's why he has all those sinus & pneumonia problems)

My daughter started having symptoms at 5 years old, my son is 20 years old and hasn't really shown any (my kids are not typical cases though)

If you feel like it, read my first entry of my blog page (link in my signature line) It also gives some good info about sweat test numbers.... be sure to ask what your child's number is... do not just let them tell you negative and forget about it. If it's anywhere in the 30's keep pushing for more testing.

Best wishes, and be sure to tell us what happens!
 

jendonl

New member
The symptoms you describe could also be due to an allergy. Our daughter was diagnosed with CF at 15 months because she wasn't growing...but when she was born she had a lot of mucousy diahrea and she didn't grow but it was because of a milk and soy allergy. Once I cut out milk and soy from my diet (I was breast feeding and she was getting through my milk), she started to grow again and the diahrea went away. I think you should still get a definitive CF test done but you might also try cutting milk and soy from your diet if your breast feeding or switch to a different formula to see if it clears up the symptoms.
 

jendonl

New member
The symptoms you describe could also be due to an allergy. Our daughter was diagnosed with CF at 15 months because she wasn't growing...but when she was born she had a lot of mucousy diahrea and she didn't grow but it was because of a milk and soy allergy. Once I cut out milk and soy from my diet (I was breast feeding and she was getting through my milk), she started to grow again and the diahrea went away. I think you should still get a definitive CF test done but you might also try cutting milk and soy from your diet if your breast feeding or switch to a different formula to see if it clears up the symptoms.
 

jendonl

New member
The symptoms you describe could also be due to an allergy. Our daughter was diagnosed with CF at 15 months because she wasn't growing...but when she was born she had a lot of mucousy diahrea and she didn't grow but it was because of a milk and soy allergy. Once I cut out milk and soy from my diet (I was breast feeding and she was getting through my milk), she started to grow again and the diahrea went away. I think you should still get a definitive CF test done but you might also try cutting milk and soy from your diet if your breast feeding or switch to a different formula to see if it clears up the symptoms.
 

grsswspr

New member
My girl was 7 when she was dx. We had gone to an allergist to find out why her nose was so plugged up and they detected nasal polyps. From there they suggested a sweat test and that was it. No lung, digestive or other problems at that time.
 

grsswspr

New member
My girl was 7 when she was dx. We had gone to an allergist to find out why her nose was so plugged up and they detected nasal polyps. From there they suggested a sweat test and that was it. No lung, digestive or other problems at that time.
 

grsswspr

New member
My girl was 7 when she was dx. We had gone to an allergist to find out why her nose was so plugged up and they detected nasal polyps. From there they suggested a sweat test and that was it. No lung, digestive or other problems at that time.
 

okok

New member
Hi Sara,

Just curious how the sweat test went and how Noah is doing. I know it can be difficult to collect enough sweat from those teeny tiny ones, but i'm still hoping that the testing was negative and that Noah is happy and growing like a weed! Let us know if you have any more questions.
Best of luck to you and your family!

PS my dd's symptoms didn't really appear until she was a year and even then were not dramatic at first. we still have no serious lung involvement mainly just digestive.
 

okok

New member
Hi Sara,

Just curious how the sweat test went and how Noah is doing. I know it can be difficult to collect enough sweat from those teeny tiny ones, but i'm still hoping that the testing was negative and that Noah is happy and growing like a weed! Let us know if you have any more questions.
Best of luck to you and your family!

PS my dd's symptoms didn't really appear until she was a year and even then were not dramatic at first. we still have no serious lung involvement mainly just digestive.
 

okok

New member
Hi Sara,

Just curious how the sweat test went and how Noah is doing. I know it can be difficult to collect enough sweat from those teeny tiny ones, but i'm still hoping that the testing was negative and that Noah is happy and growing like a weed! Let us know if you have any more questions.
Best of luck to you and your family!

PS my dd's symptoms didn't really appear until she was a year and even then were not dramatic at first. we still have no serious lung involvement mainly just digestive.
 

briellemom

New member
Sara,
Did you get the results of his sweat test back? Let us know how you are doing. My daughter had 2 borderline sweat tests, and is now pancreatic insufficient. We still do not know her mutations. She is underweight and almost always has been, since she was 9 months old. Other than that, no symptoms that we would have known about. Good luck!
 

briellemom

New member
Sara,
Did you get the results of his sweat test back? Let us know how you are doing. My daughter had 2 borderline sweat tests, and is now pancreatic insufficient. We still do not know her mutations. She is underweight and almost always has been, since she was 9 months old. Other than that, no symptoms that we would have known about. Good luck!
 

briellemom

New member
Sara,
Did you get the results of his sweat test back? Let us know how you are doing. My daughter had 2 borderline sweat tests, and is now pancreatic insufficient. We still do not know her mutations. She is underweight and almost always has been, since she was 9 months old. Other than that, no symptoms that we would have known about. Good luck!
 

rxdonald

New member
my grandson was born Friday and , like your child, symptoms showed up Sat. nite with an intestinal blockage from meconium illeus. operation to remove blockage was done yesterday, with tests perhaps today, sweat, etc. please advise any more definitive tests we should request.

Connor,s grandpa
 

rxdonald

New member
my grandson was born Friday and , like your child, symptoms showed up Sat. nite with an intestinal blockage from meconium illeus. operation to remove blockage was done yesterday, with tests perhaps today, sweat, etc. please advise any more definitive tests we should request.

Connor,s grandpa
 

rxdonald

New member
my grandson was born Friday and , like your child, symptoms showed up Sat. nite with an intestinal blockage from meconium illeus. operation to remove blockage was done yesterday, with tests perhaps today, sweat, etc. please advise any more definitive tests we should request.

Connor,s grandpa
 

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rxdonald</b></i>

my grandson was born Friday and , like your child, symptoms showed up Sat. nite with an intestinal blockage from meconium illeus. operation to remove blockage was done yesterday, with tests perhaps today, sweat, etc. please advise any more definitive tests we should request.



Connor,s grandpa</end quote></div>

Be sure to ask for the genetic testing. Often times with babies a sweat test is inconclusive or negative because they dont sweat properly yet. The genetic testing (even if used with the sweat test) confirms things & will let you know what mutations your grandson carries. I, personally, feel knowing the mutations is like knowing your blood type. You never know when that info might be important.
 

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rxdonald</b></i>

my grandson was born Friday and , like your child, symptoms showed up Sat. nite with an intestinal blockage from meconium illeus. operation to remove blockage was done yesterday, with tests perhaps today, sweat, etc. please advise any more definitive tests we should request.



Connor,s grandpa</end quote></div>

Be sure to ask for the genetic testing. Often times with babies a sweat test is inconclusive or negative because they dont sweat properly yet. The genetic testing (even if used with the sweat test) confirms things & will let you know what mutations your grandson carries. I, personally, feel knowing the mutations is like knowing your blood type. You never know when that info might be important.
 

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rxdonald</b></i>

my grandson was born Friday and , like your child, symptoms showed up Sat. nite with an intestinal blockage from meconium illeus. operation to remove blockage was done yesterday, with tests perhaps today, sweat, etc. please advise any more definitive tests we should request.



Connor,s grandpa</end quote></div>

Be sure to ask for the genetic testing. Often times with babies a sweat test is inconclusive or negative because they dont sweat properly yet. The genetic testing (even if used with the sweat test) confirms things & will let you know what mutations your grandson carries. I, personally, feel knowing the mutations is like knowing your blood type. You never know when that info might be important.
 
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