help

[needanswers]

I am the mother of a 17 mo girl with failure to thrive. We have been to endo, GI, oncologist and geneticist. She had RSV at 2 mos and a constantly runny nose but no other s/s. She weighs only 18lbs and is only 28 inches. The endo, GI and geneticist have all mentioned CF but no one has tested her for it. We have no one in our family that I know of with CF. Help me please I feel like I am in a corner.

 

[needanswers]

I am the mother of a 17 mo girl with failure to thrive. We have been to endo, GI, oncologist and geneticist. She had RSV at 2 mos and a constantly runny nose but no other s/s. She weighs only 18lbs and is only 28 inches. The endo, GI and geneticist have all mentioned CF but no one has tested her for it. We have no one in our family that I know of with CF. Help me please I feel like I am in a corner.

 

[needanswers]

I am the mother of a 17 mo girl with failure to thrive. We have been to endo, GI, oncologist and geneticist. She had RSV at 2 mos and a constantly runny nose but no other s/s. She weighs only 18lbs and is only 28 inches. The endo, GI and geneticist have all mentioned CF but no one has tested her for it. We have no one in our family that I know of with CF. Help me please I feel like I am in a corner.

 

[AnD]

I'm so sorry you are going though this! Have they said why they have mentioned it, but not gone ahead and ruled it out? I think that is where I would start. They need to rule it in or out so you (and her doctors) can move forward, one way or another.

 

[AnD]

I'm so sorry you are going though this! Have they said why they have mentioned it, but not gone ahead and ruled it out? I think that is where I would start. They need to rule it in or out so you (and her doctors) can move forward, one way or another.

 

[AnD]

I'm so sorry you are going though this! Have they said why they have mentioned it, but not gone ahead and ruled it out? I think that is where I would start. They need to rule it in or out so you (and her doctors) can move forward, one way or another.

 

[Mommafirst]

Hi! I know you are scared, but I think you know its time to get CF tested. Its an easy, non-invasive sweat test and depending on the results you should go on and get a blood test too.<br>
<br>
CF can be a scary world, but the earlier you can get treatment the healthier your daughter can be.<br>
<br>
You mention failure to thrive, have they checked her stools for pancreatic insufficiency? Do they seem more bulky, smelly, or mucousy to you? If you can get her on enzymes it may help her to gain weight. My 14 month old is 17lbs and 28 inches, so I know pretty much what you are talking about. <br>
<br>
I hope you get some answers. Feel free to ask questions either here, the family board, or to me privately.

 

[Mommafirst]

Hi! I know you are scared, but I think you know its time to get CF tested. Its an easy, non-invasive sweat test and depending on the results you should go on and get a blood test too.<br>
<br>
CF can be a scary world, but the earlier you can get treatment the healthier your daughter can be.<br>
<br>
You mention failure to thrive, have they checked her stools for pancreatic insufficiency? Do they seem more bulky, smelly, or mucousy to you? If you can get her on enzymes it may help her to gain weight. My 14 month old is 17lbs and 28 inches, so I know pretty much what you are talking about. <br>
<br>
I hope you get some answers. Feel free to ask questions either here, the family board, or to me privately.

 

[Mommafirst]

Hi! I know you are scared, but I think you know its time to get CF tested. Its an easy, non-invasive sweat test and depending on the results you should go on and get a blood test too.<br>
<br>
CF can be a scary world, but the earlier you can get treatment the healthier your daughter can be.<br>
<br>
You mention failure to thrive, have they checked her stools for pancreatic insufficiency? Do they seem more bulky, smelly, or mucousy to you? If you can get her on enzymes it may help her to gain weight. My 14 month old is 17lbs and 28 inches, so I know pretty much what you are talking about. <br>
<br>
I hope you get some answers. Feel free to ask questions either here, the family board, or to me privately.

 

[EmilysMom]

I am confused also as to why they have mentioned Cf and not tested for it. If you kiss your child on the forehead, does she taste salty? Another good indicator of CF. I would push for CF testing and be sure it is done at an accredited CF Center to be sure that the tests are done correctly and read correctly. In the meantime, ask questions and we can answer what we know for you. Hang in there!
Barbara (mom to Emily, 23 yrs old)

 

[EmilysMom]

I am confused also as to why they have mentioned Cf and not tested for it. If you kiss your child on the forehead, does she taste salty? Another good indicator of CF. I would push for CF testing and be sure it is done at an accredited CF Center to be sure that the tests are done correctly and read correctly. In the meantime, ask questions and we can answer what we know for you. Hang in there!
Barbara (mom to Emily, 23 yrs old)

 

[EmilysMom]

I am confused also as to why they have mentioned Cf and not tested for it. If you kiss your child on the forehead, does she taste salty? Another good indicator of CF. I would push for CF testing and be sure it is done at an accredited CF Center to be sure that the tests are done correctly and read correctly. In the meantime, ask questions and we can answer what we know for you. Hang in there!
Barbara (mom to Emily, 23 yrs old)

 

[JazzysMom]

I would get in someones face and tell them to stop talking and start testing. If nothing else to rule it out, but as already stated....it should be done at an accredited CF center to avoid errors.

 

[JazzysMom]

I would get in someones face and tell them to stop talking and start testing. If nothing else to rule it out, but as already stated....it should be done at an accredited CF center to avoid errors.

 

[JazzysMom]

I would get in someones face and tell them to stop talking and start testing. If nothing else to rule it out, but as already stated....it should be done at an accredited CF center to avoid errors.

 

[Ratatosk]

I agree. Push for testing. There are lots of people on this site with similar stories -- failure to thrive, no family history... At the very least they should test to rule out CF, so if it's not they can focus on some other cause for her health problems.

 

[Ratatosk]

I agree. Push for testing. There are lots of people on this site with similar stories -- failure to thrive, no family history... At the very least they should test to rule out CF, so if it's not they can focus on some other cause for her health problems.

 

[Ratatosk]

I agree. Push for testing. There are lots of people on this site with similar stories -- failure to thrive, no family history... At the very least they should test to rule out CF, so if it's not they can focus on some other cause for her health problems.

 

[needanswers]

The problem is that the endo refered us to the GI, then he was certain it was celiac disease we did an intestinal biopsy which came back negative then he refered us to the geneticist which in turn sent us back to the endo. I can't get back in to see the endo until May 2nd so I tried to get a second opinion and they can't get me in until April 24.
Are there any people out there with CF that don't have a family history.

 

[needanswers]

The problem is that the endo refered us to the GI, then he was certain it was celiac disease we did an intestinal biopsy which came back negative then he refered us to the geneticist which in turn sent us back to the endo. I can't get back in to see the endo until May 2nd so I tried to get a second opinion and they can't get me in until April 24.
Are there any people out there with CF that don't have a family history.