Negative Sweat test at 8 months

[sdelorenzo]

Throat cultures take 3-7 days to get the results back. If it has been any longer than that than you need to call and ask the results. Doctors/nurses often forget to call with the results.
Sharon, mom of Sophia, 8 and Jack, 5 both with cf, Grant, 6 months no cf

 

[sdelorenzo]

Throat cultures take 3-7 days to get the results back. If it has been any longer than that than you need to call and ask the results. Doctors/nurses often forget to call with the results.
Sharon, mom of Sophia, 8 and Jack, 5 both with cf, Grant, 6 months no cf

 

[sdelorenzo]

Throat cultures take 3-7 days to get the results back. If it has been any longer than that than you need to call and ask the results. Doctors/nurses often forget to call with the results.
Sharon, mom of Sophia, 8 and Jack, 5 both with cf, Grant, 6 months no cf

 

[sdelorenzo]

Throat cultures take 3-7 days to get the results back. If it has been any longer than that than you need to call and ask the results. Doctors/nurses often forget to call with the results.
Sharon, mom of Sophia, 8 and Jack, 5 both with cf, Grant, 6 months no cf

 

[sdelorenzo]

Throat cultures take 3-7 days to get the results back. If it has been any longer than that than you need to call and ask the results. Doctors/nurses often forget to call with the results.
<br />Sharon, mom of Sophia, 8 and Jack, 5 both with cf, Grant, 6 months no cf

 

[bet10]

So should one not use the sweat test to test siblings? My 3 year old is due to be tested and we have been advised to do the sweat test.. should we do bloods first? Confused? Our three month old was diagnosed through newborn screening with double 508 and is doing really well so far! Our three year old shows no signs, but I just want to be sure!

 

[bet10]

So should one not use the sweat test to test siblings? My 3 year old is due to be tested and we have been advised to do the sweat test.. should we do bloods first? Confused? Our three month old was diagnosed through newborn screening with double 508 and is doing really well so far! Our three year old shows no signs, but I just want to be sure!

 

[bet10]

So should one not use the sweat test to test siblings? My 3 year old is due to be tested and we have been advised to do the sweat test.. should we do bloods first? Confused? Our three month old was diagnosed through newborn screening with double 508 and is doing really well so far! Our three year old shows no signs, but I just want to be sure!

 

[bet10]

So should one not use the sweat test to test siblings? My 3 year old is due to be tested and we have been advised to do the sweat test.. should we do bloods first? Confused? Our three month old was diagnosed through newborn screening with double 508 and is doing really well so far! Our three year old shows no signs, but I just want to be sure!

 

[bet10]

So should one not use the sweat test to test siblings? My 3 year old is due to be tested and we have been advised to do the sweat test.. should we do bloods first? Confused? Our three month old was diagnosed through newborn screening with double 508 and is doing really well so far! Our three year old shows no signs, but I just want to be sure!

 

[Sofiaeden]

Sofia is not on meds yet. Her tests keep coming back negative. Also, she is not Pancreatic Insufficient, so no enzymes. The CF foundation website says that the newborn screening test and genetic testing are not meant to diagnose someone with the disease. Her doctors do not want to diagnose her with CF if she is not showing any symptoms. Right now they are calling it CFTR Metabolic Disorder. My mother in law knows a family with two siblings who have the same mutations and one sibling has symptoms the other does not.

I am very confused myself between what I read on the CF Foundation website, the forums and what my doctors and other specialists say. I guess only time will tell which way it's going to go.

Thanks for your feedback.
Buna

 

[Sofiaeden]

Sofia is not on meds yet. Her tests keep coming back negative. Also, she is not Pancreatic Insufficient, so no enzymes. The CF foundation website says that the newborn screening test and genetic testing are not meant to diagnose someone with the disease. Her doctors do not want to diagnose her with CF if she is not showing any symptoms. Right now they are calling it CFTR Metabolic Disorder. My mother in law knows a family with two siblings who have the same mutations and one sibling has symptoms the other does not.

I am very confused myself between what I read on the CF Foundation website, the forums and what my doctors and other specialists say. I guess only time will tell which way it's going to go.

Thanks for your feedback.
Buna

 

[Sofiaeden]

Sofia is not on meds yet. Her tests keep coming back negative. Also, she is not Pancreatic Insufficient, so no enzymes. The CF foundation website says that the newborn screening test and genetic testing are not meant to diagnose someone with the disease. Her doctors do not want to diagnose her with CF if she is not showing any symptoms. Right now they are calling it CFTR Metabolic Disorder. My mother in law knows a family with two siblings who have the same mutations and one sibling has symptoms the other does not.

I am very confused myself between what I read on the CF Foundation website, the forums and what my doctors and other specialists say. I guess only time will tell which way it's going to go.

Thanks for your feedback.
Buna

 

[Sofiaeden]

Sofia is not on meds yet. Her tests keep coming back negative. Also, she is not Pancreatic Insufficient, so no enzymes. The CF foundation website says that the newborn screening test and genetic testing are not meant to diagnose someone with the disease. Her doctors do not want to diagnose her with CF if she is not showing any symptoms. Right now they are calling it CFTR Metabolic Disorder. My mother in law knows a family with two siblings who have the same mutations and one sibling has symptoms the other does not.

I am very confused myself between what I read on the CF Foundation website, the forums and what my doctors and other specialists say. I guess only time will tell which way it's going to go.

Thanks for your feedback.
Buna

 

[Sofiaeden]

Sofia is not on meds yet. Her tests keep coming back negative. Also, she is not Pancreatic Insufficient, so no enzymes. The CF foundation website says that the newborn screening test and genetic testing are not meant to diagnose someone with the disease. Her doctors do not want to diagnose her with CF if she is not showing any symptoms. Right now they are calling it CFTR Metabolic Disorder. My mother in law knows a family with two siblings who have the same mutations and one sibling has symptoms the other does not.
<br />
<br />I am very confused myself between what I read on the CF Foundation website, the forums and what my doctors and other specialists say. I guess only time will tell which way it's going to go.
<br />
<br />Thanks for your feedback.
<br />Buna

 

[Buckeye]

Do you know which mutations she has? Maybe the mutations have something to do with why they aren't diagnosing her yet. And are you going to a accredited CF Clinic?

 

[Buckeye]

Do you know which mutations she has? Maybe the mutations have something to do with why they aren't diagnosing her yet. And are you going to a accredited CF Clinic?

 

[Buckeye]

Do you know which mutations she has? Maybe the mutations have something to do with why they aren't diagnosing her yet. And are you going to a accredited CF Clinic?

 

[Buckeye]

Do you know which mutations she has? Maybe the mutations have something to do with why they aren't diagnosing her yet. And are you going to a accredited CF Clinic?

 

[Buckeye]

Do you know which mutations she has? Maybe the mutations have something to do with why they aren't diagnosing her yet. <p>And are you going to a accredited CF Clinic?