My 2yo might have CF. A few questions-RESULTS IN! UPDATED! 1-16-08

A

Alyssa

New member
The fact that her numbers "went up" probably has more to do with the facility/lab and or collection methods etc than it does with any real "changes" in her body - so don't worry that it indicates she is "getting worse" in any way - I'm sure it was just a difference in the facility.

Be sure to ask about how many genes they are testing for -- see my previous posts... you really need to push for full genetic testing.

Also -- they need to do fecal fat testing - this would tell them right away if she is having issues with her pancreas and needs enzymes. For this test you have to collect some poo.... put it in a specimen cup and get it back to the lab -- I would think it takes a few days to a week to get results.

Don't worry so much right now about trying to see "signs" of CF, regardless of how many you see or don't see, with elevated sweat test numbers and some CF symptoms, you need to know for sure if you are or are not dealing with CF. CF can vary quite a bit person to person there is no one thing that you can count on having or not having that would tell you anything for certain. Right now you can see enough to know that further testing is warranted.

Best wishes -- please let us know what happens
 
A

Alyssa

New member
The fact that her numbers "went up" probably has more to do with the facility/lab and or collection methods etc than it does with any real "changes" in her body - so don't worry that it indicates she is "getting worse" in any way - I'm sure it was just a difference in the facility.

Be sure to ask about how many genes they are testing for -- see my previous posts... you really need to push for full genetic testing.

Also -- they need to do fecal fat testing - this would tell them right away if she is having issues with her pancreas and needs enzymes. For this test you have to collect some poo.... put it in a specimen cup and get it back to the lab -- I would think it takes a few days to a week to get results.

Don't worry so much right now about trying to see "signs" of CF, regardless of how many you see or don't see, with elevated sweat test numbers and some CF symptoms, you need to know for sure if you are or are not dealing with CF. CF can vary quite a bit person to person there is no one thing that you can count on having or not having that would tell you anything for certain. Right now you can see enough to know that further testing is warranted.

Best wishes -- please let us know what happens
 
A

Alyssa

New member
The fact that her numbers "went up" probably has more to do with the facility/lab and or collection methods etc than it does with any real "changes" in her body - so don't worry that it indicates she is "getting worse" in any way - I'm sure it was just a difference in the facility.

Be sure to ask about how many genes they are testing for -- see my previous posts... you really need to push for full genetic testing.

Also -- they need to do fecal fat testing - this would tell them right away if she is having issues with her pancreas and needs enzymes. For this test you have to collect some poo.... put it in a specimen cup and get it back to the lab -- I would think it takes a few days to a week to get results.

Don't worry so much right now about trying to see "signs" of CF, regardless of how many you see or don't see, with elevated sweat test numbers and some CF symptoms, you need to know for sure if you are or are not dealing with CF. CF can vary quite a bit person to person there is no one thing that you can count on having or not having that would tell you anything for certain. Right now you can see enough to know that further testing is warranted.

Best wishes -- please let us know what happens
 
A

Alyssa

New member
The fact that her numbers "went up" probably has more to do with the facility/lab and or collection methods etc than it does with any real "changes" in her body - so don't worry that it indicates she is "getting worse" in any way - I'm sure it was just a difference in the facility.

Be sure to ask about how many genes they are testing for -- see my previous posts... you really need to push for full genetic testing.

Also -- they need to do fecal fat testing - this would tell them right away if she is having issues with her pancreas and needs enzymes. For this test you have to collect some poo.... put it in a specimen cup and get it back to the lab -- I would think it takes a few days to a week to get results.

Don't worry so much right now about trying to see "signs" of CF, regardless of how many you see or don't see, with elevated sweat test numbers and some CF symptoms, you need to know for sure if you are or are not dealing with CF. CF can vary quite a bit person to person there is no one thing that you can count on having or not having that would tell you anything for certain. Right now you can see enough to know that further testing is warranted.

Best wishes -- please let us know what happens
 
A

Alyssa

New member
The fact that her numbers "went up" probably has more to do with the facility/lab and or collection methods etc than it does with any real "changes" in her body - so don't worry that it indicates she is "getting worse" in any way - I'm sure it was just a difference in the facility.

Be sure to ask about how many genes they are testing for -- see my previous posts... you really need to push for full genetic testing.

Also -- they need to do fecal fat testing - this would tell them right away if she is having issues with her pancreas and needs enzymes. For this test you have to collect some poo.... put it in a specimen cup and get it back to the lab -- I would think it takes a few days to a week to get results.

Don't worry so much right now about trying to see "signs" of CF, regardless of how many you see or don't see, with elevated sweat test numbers and some CF symptoms, you need to know for sure if you are or are not dealing with CF. CF can vary quite a bit person to person there is no one thing that you can count on having or not having that would tell you anything for certain. Right now you can see enough to know that further testing is warranted.

Best wishes -- please let us know what happens
 
V

valigirl21

Guest
I agree with every1 who is telling you 2 push for the full panel. My son's number is 44, which I'm told is borderline. He had the full panel and it came back "negative" which my son's pulm. told me could mean simply that his mutation hasn't been discovered yet. He will continue to be retested every few years or so.He is still being treated as having CF, tho. So the full panel is really important. Also if she is pancreatic insufficient the emzymes and nutrition stuff is a MUST! my son is now up to 44lbs. Yeah, Noah! Your docs seem to be doing all the right things. Good luck to you and keep us updated. We're all praying for you.
 
V

valigirl21

Guest
I agree with every1 who is telling you 2 push for the full panel. My son's number is 44, which I'm told is borderline. He had the full panel and it came back "negative" which my son's pulm. told me could mean simply that his mutation hasn't been discovered yet. He will continue to be retested every few years or so.He is still being treated as having CF, tho. So the full panel is really important. Also if she is pancreatic insufficient the emzymes and nutrition stuff is a MUST! my son is now up to 44lbs. Yeah, Noah! Your docs seem to be doing all the right things. Good luck to you and keep us updated. We're all praying for you.
 
V

valigirl21

Guest
I agree with every1 who is telling you 2 push for the full panel. My son's number is 44, which I'm told is borderline. He had the full panel and it came back "negative" which my son's pulm. told me could mean simply that his mutation hasn't been discovered yet. He will continue to be retested every few years or so.He is still being treated as having CF, tho. So the full panel is really important. Also if she is pancreatic insufficient the emzymes and nutrition stuff is a MUST! my son is now up to 44lbs. Yeah, Noah! Your docs seem to be doing all the right things. Good luck to you and keep us updated. We're all praying for you.
 
V

valigirl21

Guest
I agree with every1 who is telling you 2 push for the full panel. My son's number is 44, which I'm told is borderline. He had the full panel and it came back "negative" which my son's pulm. told me could mean simply that his mutation hasn't been discovered yet. He will continue to be retested every few years or so.He is still being treated as having CF, tho. So the full panel is really important. Also if she is pancreatic insufficient the emzymes and nutrition stuff is a MUST! my son is now up to 44lbs. Yeah, Noah! Your docs seem to be doing all the right things. Good luck to you and keep us updated. We're all praying for you.
 
V

valigirl21

Guest
I agree with every1 who is telling you 2 push for the full panel. My son's number is 44, which I'm told is borderline. He had the full panel and it came back "negative" which my son's pulm. told me could mean simply that his mutation hasn't been discovered yet. He will continue to be retested every few years or so.He is still being treated as having CF, tho. So the full panel is really important. Also if she is pancreatic insufficient the emzymes and nutrition stuff is a MUST! my son is now up to 44lbs. Yeah, Noah! Your docs seem to be doing all the right things. Good luck to you and keep us updated. We're all praying for you.
 
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