suspicion of cf

[CFHockeyMom]

You can find hundreds of stories just like yours on here. Our ped didn't believe it could be CF either. She was wrong.

Tell your ped to order the sweat test for both your kids or you'll find a Dr. that will. Unfortunately, you sometimes have to "get in their face" before they'll do anything. After all, they couldn't possibly be wrong, could they?...sarcasm

I too hope you won't be a regular here but until you at least get a sweat test, you'll always be wondering. Trust your gut. So many mom's and dad's on here just knew something was wrong and had to really push their docs to do the right thing.

 

[Mommafirst]

Our ped referred us to the CF center b/c my daughter had a meconium plug at birth. But she insisted this was just being super cautious, she couldn't imagine my daughter had CF ....but she does!! Even the very best of peds don't really understand CF since they will only come across a few cases in their career (although I wonder if the newborn screen will change this). Press for the testing, and keep pressing till you get an answer. Don't let them make you feel like a silly hypochondriac -- we moms (and dads) are pretty darn good at assessing our kids, if something doesn't feel right to you believe in your mommy instinct. Good luck and welcome to the site.

 

[Mommafirst]

Our ped referred us to the CF center b/c my daughter had a meconium plug at birth. But she insisted this was just being super cautious, she couldn't imagine my daughter had CF ....but she does!! Even the very best of peds don't really understand CF since they will only come across a few cases in their career (although I wonder if the newborn screen will change this). Press for the testing, and keep pressing till you get an answer. Don't let them make you feel like a silly hypochondriac -- we moms (and dads) are pretty darn good at assessing our kids, if something doesn't feel right to you believe in your mommy instinct. Good luck and welcome to the site.

 

[Mommafirst]

Our ped referred us to the CF center b/c my daughter had a meconium plug at birth. But she insisted this was just being super cautious, she couldn't imagine my daughter had CF ....but she does!! Even the very best of peds don't really understand CF since they will only come across a few cases in their career (although I wonder if the newborn screen will change this). Press for the testing, and keep pressing till you get an answer. Don't let them make you feel like a silly hypochondriac -- we moms (and dads) are pretty darn good at assessing our kids, if something doesn't feel right to you believe in your mommy instinct. Good luck and welcome to the site.

 

[Ratatosk]

Couple years ago, I attended the funeral of the daughter of a colleague, who was waiting for a lung transplant. She was really tiny, had digestive problems and "asthma", but was diagnosed with "interstitial lung disease".

This happened about a year after DS was born and diagnosed wcf and I always wondered if maybe she didn't have CF. Articles about this girl regarding fundraisers, encouraging organ donation talked about how she was tested as a baby and when at age 5 her fingers clubbed, but tests were inconclusive. Turns out she'd only ever had a sweat test 'cuz that's all the clinics here ever did. She was only 14 years old.

 

[Ratatosk]

Couple years ago, I attended the funeral of the daughter of a colleague, who was waiting for a lung transplant. She was really tiny, had digestive problems and "asthma", but was diagnosed with "interstitial lung disease".

This happened about a year after DS was born and diagnosed wcf and I always wondered if maybe she didn't have CF. Articles about this girl regarding fundraisers, encouraging organ donation talked about how she was tested as a baby and when at age 5 her fingers clubbed, but tests were inconclusive. Turns out she'd only ever had a sweat test 'cuz that's all the clinics here ever did. She was only 14 years old.

 

[Ratatosk]

Couple years ago, I attended the funeral of the daughter of a colleague, who was waiting for a lung transplant. She was really tiny, had digestive problems and "asthma", but was diagnosed with "interstitial lung disease".

This happened about a year after DS was born and diagnosed wcf and I always wondered if maybe she didn't have CF. Articles about this girl regarding fundraisers, encouraging organ donation talked about how she was tested as a baby and when at age 5 her fingers clubbed, but tests were inconclusive. Turns out she'd only ever had a sweat test 'cuz that's all the clinics here ever did. She was only 14 years old.

 

[Augustmom0003]

I was also told by my childrens' pediatrician that my son DID NOT have CF. (in fact, just about allll of my friends and family thought I was crazy!) I didn't leave that room until she agreed to test him. Well...a mother's intuition is not something that should be ignored and my kids' doctor learned A LOT from that event. She now listens more to parents' worries...since we know our kids better than anyone.

I would DEMAND a sweat test and a genetic test for both of your kids...and like everone else says...at a CFF accredited center.

Good luck!

 

[Augustmom0003]

I was also told by my childrens' pediatrician that my son DID NOT have CF. (in fact, just about allll of my friends and family thought I was crazy!) I didn't leave that room until she agreed to test him. Well...a mother's intuition is not something that should be ignored and my kids' doctor learned A LOT from that event. She now listens more to parents' worries...since we know our kids better than anyone.

I would DEMAND a sweat test and a genetic test for both of your kids...and like everone else says...at a CFF accredited center.

Good luck!

 

[Augustmom0003]

I was also told by my childrens' pediatrician that my son DID NOT have CF. (in fact, just about allll of my friends and family thought I was crazy!) I didn't leave that room until she agreed to test him. Well...a mother's intuition is not something that should be ignored and my kids' doctor learned A LOT from that event. She now listens more to parents' worries...since we know our kids better than anyone.

I would DEMAND a sweat test and a genetic test for both of your kids...and like everone else says...at a CFF accredited center.

Good luck!

 

[ktsmom]

I'm going to interrupt this thread for a moment to say -

Oh my goodness, Liza, what a story. I'm saying a prayer for that girl and her family. How completely senseless.

<img src="i/expressions/brokenheart.gif" border="0">

 

[ktsmom]

I'm going to interrupt this thread for a moment to say -

Oh my goodness, Liza, what a story. I'm saying a prayer for that girl and her family. How completely senseless.

<img src="i/expressions/brokenheart.gif" border="0">

 

[ktsmom]

I'm going to interrupt this thread for a moment to say -

Oh my goodness, Liza, what a story. I'm saying a prayer for that girl and her family. How completely senseless.

<img src="i/expressions/brokenheart.gif" border="0">

 

[AnD]

Okay, I have to say, my first reaction was "time for a new pediatrician" too. Why in the world would he not at least want to rule out cf to guide his course of treatment for your children? Maybe the cf center (or parents support group there)can give you the names of the pediatricians they use, if they come back as having cf (but I will pray that it isn't<img src="i/expressions/face-icon-small-wink.gif" border="0"> ).

 

[AnD]

Okay, I have to say, my first reaction was "time for a new pediatrician" too. Why in the world would he not at least want to rule out cf to guide his course of treatment for your children? Maybe the cf center (or parents support group there)can give you the names of the pediatricians they use, if they come back as having cf (but I will pray that it isn't<img src="i/expressions/face-icon-small-wink.gif" border="0"> ).

 

[AnD]

Okay, I have to say, my first reaction was "time for a new pediatrician" too. Why in the world would he not at least want to rule out cf to guide his course of treatment for your children? Maybe the cf center (or parents support group there)can give you the names of the pediatricians they use, if they come back as having cf (but I will pray that it isn't<img src="i/expressions/face-icon-small-wink.gif" border="0"> ).