New Mom- help understanding dx of CF

M

mom2lillian

New member
Sweat tests are so so so so often wrong, if you read here there are so many cases, I still have never had a positive sweat test. I had zero symptoms for many years, I was diagnosed at 21 years of age.

Much damage can be done before symptoms appear. Wouldnt you rather know your child has CF and be able to have the advantage over the disease and seize the opportunity to be proactive and preventive?

The waiting until 6months is a bad idea because you could have another sweat test then and every 6months after that and never get a positve and your child could never show a symptom until god forbid they catch MRSA or a bad cold/flu and end up in hospital and then everyone is scrambling to figure out what is wrong. Also, by then there will be more stigma with your child, they will say she is too old, she would have had a symptom by now and completely skip over the CF possibility. Many pediatricians are veyr uneducated about CF and will tell you (which I am sure is very reassuring but falsely so) oh dont worry she has no symptoms I am SURE she doesnt have it. If I had a dollar for evere person that said that in regards to me, including the person running my sweat tests!

Seize this opportunity, yell, fight and argue to get genetic testing, I have information about getting genetic testing for my daughter and some loopholes I found if you visit it is under ambry/genetics. If it is denied appeal appeal appeal.

I hope her test is negative and best wishes to you
 
M

mom2lillian

New member
Sweat tests are so so so so often wrong, if you read here there are so many cases, I still have never had a positive sweat test. I had zero symptoms for many years, I was diagnosed at 21 years of age.

Much damage can be done before symptoms appear. Wouldnt you rather know your child has CF and be able to have the advantage over the disease and seize the opportunity to be proactive and preventive?

The waiting until 6months is a bad idea because you could have another sweat test then and every 6months after that and never get a positve and your child could never show a symptom until god forbid they catch MRSA or a bad cold/flu and end up in hospital and then everyone is scrambling to figure out what is wrong. Also, by then there will be more stigma with your child, they will say she is too old, she would have had a symptom by now and completely skip over the CF possibility. Many pediatricians are veyr uneducated about CF and will tell you (which I am sure is very reassuring but falsely so) oh dont worry she has no symptoms I am SURE she doesnt have it. If I had a dollar for evere person that said that in regards to me, including the person running my sweat tests!

Seize this opportunity, yell, fight and argue to get genetic testing, I have information about getting genetic testing for my daughter and some loopholes I found if you visit it is under ambry/genetics. If it is denied appeal appeal appeal.

I hope her test is negative and best wishes to you
 
M

mom2lillian

New member
Sweat tests are so so so so often wrong, if you read here there are so many cases, I still have never had a positive sweat test. I had zero symptoms for many years, I was diagnosed at 21 years of age.

Much damage can be done before symptoms appear. Wouldnt you rather know your child has CF and be able to have the advantage over the disease and seize the opportunity to be proactive and preventive?

The waiting until 6months is a bad idea because you could have another sweat test then and every 6months after that and never get a positve and your child could never show a symptom until god forbid they catch MRSA or a bad cold/flu and end up in hospital and then everyone is scrambling to figure out what is wrong. Also, by then there will be more stigma with your child, they will say she is too old, she would have had a symptom by now and completely skip over the CF possibility. Many pediatricians are veyr uneducated about CF and will tell you (which I am sure is very reassuring but falsely so) oh dont worry she has no symptoms I am SURE she doesnt have it. If I had a dollar for evere person that said that in regards to me, including the person running my sweat tests!

Seize this opportunity, yell, fight and argue to get genetic testing, I have information about getting genetic testing for my daughter and some loopholes I found if you visit it is under ambry/genetics. If it is denied appeal appeal appeal.

I hope her test is negative and best wishes to you
 
M

mom2lillian

New member
Sweat tests are so so so so often wrong, if you read here there are so many cases, I still have never had a positive sweat test. I had zero symptoms for many years, I was diagnosed at 21 years of age.

Much damage can be done before symptoms appear. Wouldnt you rather know your child has CF and be able to have the advantage over the disease and seize the opportunity to be proactive and preventive?

The waiting until 6months is a bad idea because you could have another sweat test then and every 6months after that and never get a positve and your child could never show a symptom until god forbid they catch MRSA or a bad cold/flu and end up in hospital and then everyone is scrambling to figure out what is wrong. Also, by then there will be more stigma with your child, they will say she is too old, she would have had a symptom by now and completely skip over the CF possibility. Many pediatricians are veyr uneducated about CF and will tell you (which I am sure is very reassuring but falsely so) oh dont worry she has no symptoms I am SURE she doesnt have it. If I had a dollar for evere person that said that in regards to me, including the person running my sweat tests!

Seize this opportunity, yell, fight and argue to get genetic testing, I have information about getting genetic testing for my daughter and some loopholes I found if you visit it is under ambry/genetics. If it is denied appeal appeal appeal.

I hope her test is negative and best wishes to you
 
M

mom2lillian

New member
Sweat tests are so so so so often wrong, if you read here there are so many cases, I still have never had a positive sweat test. I had zero symptoms for many years, I was diagnosed at 21 years of age.
<br />
<br />Much damage can be done before symptoms appear. Wouldnt you rather know your child has CF and be able to have the advantage over the disease and seize the opportunity to be proactive and preventive?
<br />
<br />The waiting until 6months is a bad idea because you could have another sweat test then and every 6months after that and never get a positve and your child could never show a symptom until god forbid they catch MRSA or a bad cold/flu and end up in hospital and then everyone is scrambling to figure out what is wrong. Also, by then there will be more stigma with your child, they will say she is too old, she would have had a symptom by now and completely skip over the CF possibility. Many pediatricians are veyr uneducated about CF and will tell you (which I am sure is very reassuring but falsely so) oh dont worry she has no symptoms I am SURE she doesnt have it. If I had a dollar for evere person that said that in regards to me, including the person running my sweat tests!
<br />
<br />Seize this opportunity, yell, fight and argue to get genetic testing, I have information about getting genetic testing for my daughter and some loopholes I found if you visit it is under ambry/genetics. If it is denied appeal appeal appeal.
<br />
<br />I hope her test is negative and best wishes to you
 
L

LouLou

New member
Won't you feel guilty if down the road she becomes symptomatic and you hadn't persued testing earlier? Prevention is key with cf. My son passed the sweat test but genetic testing results show two mutations.
 
L

LouLou

New member
Won't you feel guilty if down the road she becomes symptomatic and you hadn't persued testing earlier? Prevention is key with cf. My son passed the sweat test but genetic testing results show two mutations.
 
L

LouLou

New member
Won't you feel guilty if down the road she becomes symptomatic and you hadn't persued testing earlier? Prevention is key with cf. My son passed the sweat test but genetic testing results show two mutations.
 
L

LouLou

New member
Won't you feel guilty if down the road she becomes symptomatic and you hadn't persued testing earlier? Prevention is key with cf. My son passed the sweat test but genetic testing results show two mutations.
 
L

LouLou

New member
Won't you feel guilty if down the road she becomes symptomatic and you hadn't persued testing earlier? Prevention is key with cf. My son passed the sweat test but genetic testing results show two mutations.
 
T

tcb121

Guest
I'm in early stages of going through the same situation as you. Thank goodness I found some good information on IRT levels vs actual cases of CF. With levels under 140 your daughter is in a very low near 0% chance of having CF. See the document below:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.hawaii.edu/hivandaids/Newborn_Screening_for_Cystic_Fibrosis_in_Wisconsin__Comp.pdf
">http://www.hawaii.edu/hivandai...n_Wisconsin__Comp.pdf
</a>
Did she also have normal or above normal apgar scores? If so that is also a good sign that she does not have CF.

Our daughter has not been sweat tested yet, but is scheduled to be tested next week. Her IRT was 139 with apgars of 9 9. She shows no symptoms and within a week was back to her birth weight. Our ped said the screening are getting lowered to catch the 1 - million cases that they would normally miss in years past. Two years ago here in Maryland our daughter would not have even been flagged because the IRT cutoff was over 180. Your daughter would have fallen into that same category and is likely fine. Get further testing if you must, but have some peace that she is in a really low statistical category.
 
T

tcb121

Guest
I'm in early stages of going through the same situation as you. Thank goodness I found some good information on IRT levels vs actual cases of CF. With levels under 140 your daughter is in a very low near 0% chance of having CF. See the document below:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.hawaii.edu/hivandaids/Newborn_Screening_for_Cystic_Fibrosis_in_Wisconsin__Comp.pdf
">http://www.hawaii.edu/hivandai...n_Wisconsin__Comp.pdf
</a>
Did she also have normal or above normal apgar scores? If so that is also a good sign that she does not have CF.

Our daughter has not been sweat tested yet, but is scheduled to be tested next week. Her IRT was 139 with apgars of 9 9. She shows no symptoms and within a week was back to her birth weight. Our ped said the screening are getting lowered to catch the 1 - million cases that they would normally miss in years past. Two years ago here in Maryland our daughter would not have even been flagged because the IRT cutoff was over 180. Your daughter would have fallen into that same category and is likely fine. Get further testing if you must, but have some peace that she is in a really low statistical category.
 
T

tcb121

Guest
I'm in early stages of going through the same situation as you. Thank goodness I found some good information on IRT levels vs actual cases of CF. With levels under 140 your daughter is in a very low near 0% chance of having CF. See the document below:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.hawaii.edu/hivandaids/Newborn_Screening_for_Cystic_Fibrosis_in_Wisconsin__Comp.pdf
">http://www.hawaii.edu/hivandai...n_Wisconsin__Comp.pdf
</a>
Did she also have normal or above normal apgar scores? If so that is also a good sign that she does not have CF.

Our daughter has not been sweat tested yet, but is scheduled to be tested next week. Her IRT was 139 with apgars of 9 9. She shows no symptoms and within a week was back to her birth weight. Our ped said the screening are getting lowered to catch the 1 - million cases that they would normally miss in years past. Two years ago here in Maryland our daughter would not have even been flagged because the IRT cutoff was over 180. Your daughter would have fallen into that same category and is likely fine. Get further testing if you must, but have some peace that she is in a really low statistical category.
 
T

tcb121

Guest
I'm in early stages of going through the same situation as you. Thank goodness I found some good information on IRT levels vs actual cases of CF. With levels under 140 your daughter is in a very low near 0% chance of having CF. See the document below:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.hawaii.edu/hivandaids/Newborn_Screening_for_Cystic_Fibrosis_in_Wisconsin__Comp.pdf
">http://www.hawaii.edu/hivandai...n_Wisconsin__Comp.pdf
</a>
Did she also have normal or above normal apgar scores? If so that is also a good sign that she does not have CF.

Our daughter has not been sweat tested yet, but is scheduled to be tested next week. Her IRT was 139 with apgars of 9 9. She shows no symptoms and within a week was back to her birth weight. Our ped said the screening are getting lowered to catch the 1 - million cases that they would normally miss in years past. Two years ago here in Maryland our daughter would not have even been flagged because the IRT cutoff was over 180. Your daughter would have fallen into that same category and is likely fine. Get further testing if you must, but have some peace that she is in a really low statistical category.
 
T

tcb121

Guest
I'm in early stages of going through the same situation as you. Thank goodness I found some good information on IRT levels vs actual cases of CF. With levels under 140 your daughter is in a very low near 0% chance of having CF. See the document below:
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.hawaii.edu/hivandaids/Newborn_Screening_for_Cystic_Fibrosis_in_Wisconsin__Comp.pdf
">http://www.hawaii.edu/hivandai...n_Wisconsin__Comp.pdf
</a><br />
<br />Did she also have normal or above normal apgar scores? If so that is also a good sign that she does not have CF.
<br />
<br />Our daughter has not been sweat tested yet, but is scheduled to be tested next week. Her IRT was 139 with apgars of 9 9. She shows no symptoms and within a week was back to her birth weight. Our ped said the screening are getting lowered to catch the 1 - million cases that they would normally miss in years past. Two years ago here in Maryland our daughter would not have even been flagged because the IRT cutoff was over 180. Your daughter would have fallen into that same category and is likely fine. Get further testing if you must, but have some peace that she is in a really low statistical category.
 
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