Terrified

[geniecarter]

My 13 month old's GI doc told us that she wanted a CF testing because of low weight gain and frequent pneumonia. I immediatly started looking uo info but am so confused. She said he didn't LOOK like he had it but she just wanted to be certain. what do children look like that have CF?? he is in the 5th percentile on weight frequent ear infections and 3 pneumonias so far. He also has severe acid reflux which is why he even sees GI doc. PLease someone give me some clear guidence!!

 

[geniecarter]

My 13 month old's GI doc told us that she wanted a CF testing because of low weight gain and frequent pneumonia. I immediatly started looking uo info but am so confused. She said he didn't LOOK like he had it but she just wanted to be certain. what do children look like that have CF?? he is in the 5th percentile on weight frequent ear infections and 3 pneumonias so far. He also has severe acid reflux which is why he even sees GI doc. PLease someone give me some clear guidence!!

 

[geniecarter]

My 13 month old's GI doc told us that she wanted a CF testing because of low weight gain and frequent pneumonia. I immediatly started looking uo info but am so confused. She said he didn't LOOK like he had it but she just wanted to be certain. what do children look like that have CF?? he is in the 5th percentile on weight frequent ear infections and 3 pneumonias so far. He also has severe acid reflux which is why he even sees GI doc. PLease someone give me some clear guidence!!

 

[mariahsmommy]

People with CF don't look any different than people who don't have CF. People tell me all of the time, well it doesn't look like there is anything wrong with your daughter.
CF affects mainly the lungs and digestive system. We do daily respiratory treatments for my daughter, she takes Prevacid for reflux, and she takes digestive enzymes with each meal.
I would push for testing. A sweat test is a quick test that gives results in a few days, but you also want to do a full genetic panel to test for all known CF causing mutations.
I am so sorry you are dealing with this, but this is a great site with lots of information, but don't get too caught up in all the bad stuff. CF is different for everyone and all you can do is all you can do. I hope you find out soon so that you can start preventative measures now to keep your child healthy. HUGS

 

[mariahsmommy]

People with CF don't look any different than people who don't have CF. People tell me all of the time, well it doesn't look like there is anything wrong with your daughter.
CF affects mainly the lungs and digestive system. We do daily respiratory treatments for my daughter, she takes Prevacid for reflux, and she takes digestive enzymes with each meal.
I would push for testing. A sweat test is a quick test that gives results in a few days, but you also want to do a full genetic panel to test for all known CF causing mutations.
I am so sorry you are dealing with this, but this is a great site with lots of information, but don't get too caught up in all the bad stuff. CF is different for everyone and all you can do is all you can do. I hope you find out soon so that you can start preventative measures now to keep your child healthy. HUGS

 

[mariahsmommy]

People with CF don't look any different than people who don't have CF. People tell me all of the time, well it doesn't look like there is anything wrong with your daughter.
<br />CF affects mainly the lungs and digestive system. We do daily respiratory treatments for my daughter, she takes Prevacid for reflux, and she takes digestive enzymes with each meal.
<br />I would push for testing. A sweat test is a quick test that gives results in a few days, but you also want to do a full genetic panel to test for all known CF causing mutations.
<br />I am so sorry you are dealing with this, but this is a great site with lots of information, but don't get too caught up in all the bad stuff. CF is different for everyone and all you can do is all you can do. I hope you find out soon so that you can start preventative measures now to keep your child healthy. HUGS

 

[CountryGirl]

Hey,

maeiahsmommy is right but there are a few physical signs that can be a sign on lung disease. One is clubbing in the nails and another is a barrel shaped chest (more broad chestedness than normal).

 

[CountryGirl]

Hey,

maeiahsmommy is right but there are a few physical signs that can be a sign on lung disease. One is clubbing in the nails and another is a barrel shaped chest (more broad chestedness than normal).

 

[CountryGirl]

Hey,
<br />
<br />maeiahsmommy is right but there are a few physical signs that can be a sign on lung disease. One is clubbing in the nails and another is a barrel shaped chest (more broad chestedness than normal).

 

[petnurse]

'm sorry you are dealing with this. A gi doc should know better. CF kids don't look any different especially at that age. It also manifests differently in each person. Definitely do the test. Weight issues, pneumonia, and reflux are tell tale symptoms. How are your child's stools. We have never had this problem, but most have oily foul smelling bms. You definitely want to get it diagnosed early if it is cf. Good luck and ask away on here!

 

[petnurse]

'm sorry you are dealing with this. A gi doc should know better. CF kids don't look any different especially at that age. It also manifests differently in each person. Definitely do the test. Weight issues, pneumonia, and reflux are tell tale symptoms. How are your child's stools. We have never had this problem, but most have oily foul smelling bms. You definitely want to get it diagnosed early if it is cf. Good luck and ask away on here!

 

[petnurse]

'm sorry you are dealing with this. A gi doc should know better. CF kids don't look any different especially at that age. It also manifests differently in each person. Definitely do the test. Weight issues, pneumonia, and reflux are tell tale symptoms. How are your child's stools. We have never had this problem, but most have oily foul smelling bms. You definitely want to get it diagnosed early if it is cf. Good luck and ask away on here!

 

[ktsmom]

I am so sorry you were introduced to CF in this manner. Shame on the doc for giving you her opinion like that and then not much else to educate/inform you.

Our very well-respected pediatrician also told us he was dumbfounded, and that our daughter "didn't look like she had CF" once we were finally diagnosed at age 3 1/2.

The one physical trait that I always noticed (and brought repeatedly to the doc's attention) was an extremely distended belly. Now that she has been diagnosed and is getting the right meds, I agree with other posters she looks like a normal kiddo.

It is actually a good thing to get the testing done and to know one way or the other. You might get more specifics about what test(s) they plan to do and then post here with any questions. Good luck and welcome!

 

[ktsmom]

I am so sorry you were introduced to CF in this manner. Shame on the doc for giving you her opinion like that and then not much else to educate/inform you.

Our very well-respected pediatrician also told us he was dumbfounded, and that our daughter "didn't look like she had CF" once we were finally diagnosed at age 3 1/2.

The one physical trait that I always noticed (and brought repeatedly to the doc's attention) was an extremely distended belly. Now that she has been diagnosed and is getting the right meds, I agree with other posters she looks like a normal kiddo.

It is actually a good thing to get the testing done and to know one way or the other. You might get more specifics about what test(s) they plan to do and then post here with any questions. Good luck and welcome!

 

[ktsmom]

I am so sorry you were introduced to CF in this manner. Shame on the doc for giving you her opinion like that and then not much else to educate/inform you.
<br />
<br />Our very well-respected pediatrician also told us he was dumbfounded, and that our daughter "didn't look like she had CF" once we were finally diagnosed at age 3 1/2.
<br />
<br />The one physical trait that I always noticed (and brought repeatedly to the doc's attention) was an extremely distended belly. Now that she has been diagnosed and is getting the right meds, I agree with other posters she looks like a normal kiddo.
<br />
<br />It is actually a good thing to get the testing done and to know one way or the other. You might get more specifics about what test(s) they plan to do and then post here with any questions. Good luck and welcome!

 

[geniecarter]

Well poo is definatly bad smelling but he's never really had loose stools. Normal pudding like at best. Mostly hard and constipation is a real problem for him. He has a pulmoligist appt on wednesday. Any specific questions i should ask? i have no experiance with this kind of thing. my other son was sick but it was normal kid stuff like ear infections and colds. i appreciate any advice you can give. thanks

 

[geniecarter]

Well poo is definatly bad smelling but he's never really had loose stools. Normal pudding like at best. Mostly hard and constipation is a real problem for him. He has a pulmoligist appt on wednesday. Any specific questions i should ask? i have no experiance with this kind of thing. my other son was sick but it was normal kid stuff like ear infections and colds. i appreciate any advice you can give. thanks

 

[geniecarter]

Well poo is definatly bad smelling but he's never really had loose stools. Normal pudding like at best. Mostly hard and constipation is a real problem for him. He has a pulmoligist appt on wednesday. Any specific questions i should ask? i have no experiance with this kind of thing. my other son was sick but it was normal kid stuff like ear infections and colds. i appreciate any advice you can give. thanks

 

[NancyLKF]

After having one baby with CF (my first) and now one baby without CF (my second 7 weeks old) I now feel like I finally know what "normal" newborn poop looks like... It's yellowish/mustard like in color with little dot-size pieces in it. My CF baby's poop was fluffy and thick and brown/tan/green. And when she pooped it was everywhere. The smell has been totally different too. CF baby was a terrible room filling smell. The smell lingered for hours. Non-cf baby's poops smell a little like sulfur.
As for questions to ask - they will come to you. But testing should include the sweat test and genetic testing. You can go to cff.org for more info on testing for CF.

 

[NancyLKF]

After having one baby with CF (my first) and now one baby without CF (my second 7 weeks old) I now feel like I finally know what "normal" newborn poop looks like... It's yellowish/mustard like in color with little dot-size pieces in it. My CF baby's poop was fluffy and thick and brown/tan/green. And when she pooped it was everywhere. The smell has been totally different too. CF baby was a terrible room filling smell. The smell lingered for hours. Non-cf baby's poops smell a little like sulfur.
As for questions to ask - they will come to you. But testing should include the sweat test and genetic testing. You can go to cff.org for more info on testing for CF.