I'm just going to overreact, mkay?

SarahProcter · Mar 25, 2009

My daughter's sweat test at 2 months old was 41. I asked the doctor whether he would have concluded that she did NOT have CF if it had been 39. He said no, that for infants, he finds anything above 30 "highly suspicious" and would have continued to investigate. We did end up finding two mutations, conclusively confirming her diagnosis, when they did the full genetic sequence instead of just the screen. So, everything I've heard supports your gut feel that you should push for full genetic testing, especially in light of the weight gain issues and poop issues you've faced.

Did they do a fecal elastase test to check for pancreatic (in)sufficiency?

SarahProcter · Mar 25, 2009

My daughter's sweat test at 2 months old was 41. I asked the doctor whether he would have concluded that she did NOT have CF if it had been 39. He said no, that for infants, he finds anything above 30 "highly suspicious" and would have continued to investigate. We did end up finding two mutations, conclusively confirming her diagnosis, when they did the full genetic sequence instead of just the screen. So, everything I've heard supports your gut feel that you should push for full genetic testing, especially in light of the weight gain issues and poop issues you've faced.

Did they do a fecal elastase test to check for pancreatic (in)sufficiency?

SarahProcter · Mar 25, 2009

My daughter's sweat test at 2 months old was 41. I asked the doctor whether he would have concluded that she did NOT have CF if it had been 39. He said no, that for infants, he finds anything above 30 "highly suspicious" and would have continued to investigate. We did end up finding two mutations, conclusively confirming her diagnosis, when they did the full genetic sequence instead of just the screen. So, everything I've heard supports your gut feel that you should push for full genetic testing, especially in light of the weight gain issues and poop issues you've faced.

Did they do a fecal elastase test to check for pancreatic (in)sufficiency?

SarahProcter · Mar 25, 2009

My daughter's sweat test at 2 months old was 41. I asked the doctor whether he would have concluded that she did NOT have CF if it had been 39. He said no, that for infants, he finds anything above 30 "highly suspicious" and would have continued to investigate. We did end up finding two mutations, conclusively confirming her diagnosis, when they did the full genetic sequence instead of just the screen. So, everything I've heard supports your gut feel that you should push for full genetic testing, especially in light of the weight gain issues and poop issues you've faced.

Did they do a fecal elastase test to check for pancreatic (in)sufficiency?

SarahProcter · Mar 25, 2009

My daughter's sweat test at 2 months old was 41. I asked the doctor whether he would have concluded that she did NOT have CF if it had been 39. He said no, that for infants, he finds anything above 30 "highly suspicious" and would have continued to investigate. We did end up finding two mutations, conclusively confirming her diagnosis, when they did the full genetic sequence instead of just the screen. So, everything I've heard supports your gut feel that you should push for full genetic testing, especially in light of the weight gain issues and poop issues you've faced.
<br />
<br />Did they do a fecal elastase test to check for pancreatic (in)sufficiency?

yellowitchgrl · Mar 25, 2009

We haven't done anything but the initial sweat test at a facility that isn't recc by the CFF, so I'm meeting with his ped tomorrow to get a referral to Hopkins and we'll go from there. I'll keep everyone posted on what happens tomorrow.

yellowitchgrl · Mar 25, 2009

We haven't done anything but the initial sweat test at a facility that isn't recc by the CFF, so I'm meeting with his ped tomorrow to get a referral to Hopkins and we'll go from there. I'll keep everyone posted on what happens tomorrow.

yellowitchgrl · Mar 25, 2009

We haven't done anything but the initial sweat test at a facility that isn't recc by the CFF, so I'm meeting with his ped tomorrow to get a referral to Hopkins and we'll go from there. I'll keep everyone posted on what happens tomorrow.

yellowitchgrl · Mar 25, 2009

We haven't done anything but the initial sweat test at a facility that isn't recc by the CFF, so I'm meeting with his ped tomorrow to get a referral to Hopkins and we'll go from there. I'll keep everyone posted on what happens tomorrow.

yellowitchgrl · Mar 25, 2009

We haven't done anything but the initial sweat test at a facility that isn't recc by the CFF, so I'm meeting with his ped tomorrow to get a referral to Hopkins and we'll go from there. I'll keep everyone posted on what happens tomorrow.

Demekadj · Apr 7, 2009