CF patients thrive

[NanaOf8GirlsAndCounting]

We were concerned with Graycie for being failure to thrive since birth and them pushing us to that 50%. After working with her dietitian we discovered that as long as they are on their own curve they are thriving....Graycie does have a g-tube and a short gut but she is thriving, even if she is on yellow at the clinic. I do know children who are PS and had no problems with weight gain at all, but they still have CF. Makes no sense to diagnois CF by thriving....

 

[NanaOf8GirlsAndCounting]

We were concerned with Graycie for being failure to thrive since birth and them pushing us to that 50%. After working with her dietitian we discovered that as long as they are on their own curve they are thriving....Graycie does have a g-tube and a short gut but she is thriving, even if she is on yellow at the clinic. I do know children who are PS and had no problems with weight gain at all, but they still have CF. Makes no sense to diagnois CF by thriving....

 

[SarahProcter]

My daughter is pancreatic sufficient and has never been failure to thrive. She's tall and healthy and has no problems with digestion.

Her sweat tests have been 41, 40, and 37. Her diagnosis is confirmed by genetic testing - she has DF508 and S1159P, a rare one. You definitely should press for genetic testing.

 

[SarahProcter]

My daughter is pancreatic sufficient and has never been failure to thrive. She's tall and healthy and has no problems with digestion.

Her sweat tests have been 41, 40, and 37. Her diagnosis is confirmed by genetic testing - she has DF508 and S1159P, a rare one. You definitely should press for genetic testing.

 

[SarahProcter]

My daughter is pancreatic sufficient and has never been failure to thrive. She's tall and healthy and has no problems with digestion.
<br />
<br />Her sweat tests have been 41, 40, and 37. Her diagnosis is confirmed by genetic testing - she has DF508 and S1159P, a rare one. You definitely should press for genetic testing.

 

[MaeFlower]

Tuesday Vivien had a repeat sweat test at a different CF center, it came back 10. The Pulomonologist believes there is no reason to push for the complete deletions & duplications CF test. He claims that since her initial sweat test was performed at a hospital that is only allowed to test, not treat, we should treat that test (the initial) as if it was null & void. He said that hospital has been known to have errors. He referred us to an ENT that believes Vivi may have issues with her larynx, thus causing what he believes is aspiration pneumonia. He still had no explanation for her stools. We are trying to get in with the GI specialist, however he had a partner leave his practice, so we were told it could be months before she could be seen...But I have gotten smart in all of this & began taking pictures of her stools & gave them to both the ENT & Pul, so they can see for themselves & hopefully push the GI doc to scope her sooner. I guess I wont fully rule out CF until they do a complete panel, or should I, since the repeat test came back with such a low #.

I apologize for so much info, but just wondering (not sure we are allowed to talk about centers on here), if anyone is familiar with MUSC in SC & if so, how has the experience been?

 

[MaeFlower]

Tuesday Vivien had a repeat sweat test at a different CF center, it came back 10. The Pulomonologist believes there is no reason to push for the complete deletions & duplications CF test. He claims that since her initial sweat test was performed at a hospital that is only allowed to test, not treat, we should treat that test (the initial) as if it was null & void. He said that hospital has been known to have errors. He referred us to an ENT that believes Vivi may have issues with her larynx, thus causing what he believes is aspiration pneumonia. He still had no explanation for her stools. We are trying to get in with the GI specialist, however he had a partner leave his practice, so we were told it could be months before she could be seen...But I have gotten smart in all of this & began taking pictures of her stools & gave them to both the ENT & Pul, so they can see for themselves & hopefully push the GI doc to scope her sooner. I guess I wont fully rule out CF until they do a complete panel, or should I, since the repeat test came back with such a low #.

I apologize for so much info, but just wondering (not sure we are allowed to talk about centers on here), if anyone is familiar with MUSC in SC & if so, how has the experience been?

 

[MaeFlower]

Tuesday Vivien had a repeat sweat test at a different CF center, it came back 10. The Pulomonologist believes there is no reason to push for the complete deletions & duplications CF test. He claims that since her initial sweat test was performed at a hospital that is only allowed to test, not treat, we should treat that test (the initial) as if it was null & void. He said that hospital has been known to have errors. He referred us to an ENT that believes Vivi may have issues with her larynx, thus causing what he believes is aspiration pneumonia. He still had no explanation for her stools. We are trying to get in with the GI specialist, however he had a partner leave his practice, so we were told it could be months before she could be seen...But I have gotten smart in all of this & began taking pictures of her stools & gave them to both the ENT & Pul, so they can see for themselves & hopefully push the GI doc to scope her sooner. I guess I wont fully rule out CF until they do a complete panel, or should I, since the repeat test came back with such a low #.
<br />
<br />I apologize for so much info, but just wondering (not sure we are allowed to talk about centers on here), if anyone is familiar with MUSC in SC & if so, how has the experience been?

 

[ymikhale]

definitely push for the full panel. there are several members on this forum whose kids had negative sweat tests only to find out later they had in CF. I sincerely hope that Vivien does not have it, but you cannot be sure until you rule it out with full genetic testing.

 

[ymikhale]

definitely push for the full panel. there are several members on this forum whose kids had negative sweat tests only to find out later they had in CF. I sincerely hope that Vivien does not have it, but you cannot be sure until you rule it out with full genetic testing.

 

[ymikhale]

definitely push for the full panel. there are several members on this forum whose kids had negative sweat tests only to find out later they had in CF. I sincerely hope that Vivien does not have it, but you cannot be sure until you rule it out with full genetic testing.