Question about "Borderline" result

unclet

New member
We just got results from our 2 1/2 year old.  His results 14
months ago were 44/42.  His results this time were 48/42.
 Does anyone have any information on these results? Is this a
good sign or not so good?
 

unclet

New member
We just got results from our 2 1/2 year old.  His results 14
months ago were 44/42.  His results this time were 48/42.
 Does anyone have any information on these results? Is this a
good sign or not so good?
 

unclet

New member
We just got results from our 2 1/2 year old.  His results 14
months ago were 44/42.  His results this time were 48/42.
 Does anyone have any information on these results? Is this a
good sign or not so good?
 
M

Mommafirst

Guest
Question about "Borderline

I'm not an expert, but the difference seems negligible to me.
 The sweat chloride can vary a bit.  My daughter had a 53
at her first measure and 45 at her second.   As far as
being borderline, well I would think they'd want to run a genetic
test.  My daughter was found to have a very rare mutation that
is usually associated with borderline sweat tests and less
severe symptoms.  I would imagine that they would see
those numbers as inconclusive, and want to do other testing.<br>
<br>
I hope this makes sense.  I guess I'm assuming you have some
knowledge -- if I'm not clear I'd be happy to backtrack a bit.
 
M

Mommafirst

Guest
Question about "Borderline

I'm not an expert, but the difference seems negligible to me.
 The sweat chloride can vary a bit.  My daughter had a 53
at her first measure and 45 at her second.   As far as
being borderline, well I would think they'd want to run a genetic
test.  My daughter was found to have a very rare mutation that
is usually associated with borderline sweat tests and less
severe symptoms.  I would imagine that they would see
those numbers as inconclusive, and want to do other testing.<br>
<br>
I hope this makes sense.  I guess I'm assuming you have some
knowledge -- if I'm not clear I'd be happy to backtrack a bit.
 
M

Mommafirst

Guest
Question about "Borderline

I'm not an expert, but the difference seems negligible to me.
 The sweat chloride can vary a bit.  My daughter had a 53
at her first measure and 45 at her second.   As far as
being borderline, well I would think they'd want to run a genetic
test.  My daughter was found to have a very rare mutation that
is usually associated with borderline sweat tests and less
severe symptoms.  I would imagine that they would see
those numbers as inconclusive, and want to do other testing.<br>
<br>
I hope this makes sense.  I guess I'm assuming you have some
knowledge -- if I'm not clear I'd be happy to backtrack a bit.
 

unclet

New member
Question about "Borderline

Thank you so much for your quick response.  This is all a
learning process for me.<br>
<br>
Is your daughter considered CF? When you said she was first tested
at 53, but then 45, I assumed she did not have CF.  But I
wasn't sure what you meant by a "very rare mutation".
 Thank  you again for any information you have.
  
 

unclet

New member
Question about "Borderline

Thank you so much for your quick response.  This is all a
learning process for me.<br>
<br>
Is your daughter considered CF? When you said she was first tested
at 53, but then 45, I assumed she did not have CF.  But I
wasn't sure what you meant by a "very rare mutation".
 Thank  you again for any information you have.
  
 

unclet

New member
Question about "Borderline

Thank you so much for your quick response.  This is all a
learning process for me.<br>
<br>
Is your daughter considered CF? When you said she was first tested
at 53, but then 45, I assumed she did not have CF.  But I
wasn't sure what you meant by a "very rare mutation".
 Thank  you again for any information you have.
  
 

JazzysMom

New member
Question about "Borderline

The sweat test isnt a gaurantee so if borderline results come from it I would suggest getting the genetic testing to look for the CF genes. Heather said that her daughters sweat test came back borderline, but when they did the genetic testing for the gene, her daughter didnt have any of the "top 10" most common so to speak.
 

JazzysMom

New member
Question about "Borderline

The sweat test isnt a gaurantee so if borderline results come from it I would suggest getting the genetic testing to look for the CF genes. Heather said that her daughters sweat test came back borderline, but when they did the genetic testing for the gene, her daughter didnt have any of the "top 10" most common so to speak.
 

JazzysMom

New member
Question about "Borderline

The sweat test isnt a gaurantee so if borderline results come from it I would suggest getting the genetic testing to look for the CF genes. Heather said that her daughters sweat test came back borderline, but when they did the genetic testing for the gene, her daughter didnt have any of the "top 10" most common so to speak.
 
M

Mommafirst

Guest
Question about "Borderline

Yes, my daughter is considered CF.  We are hopeful that it
will be an atypical manifestation that will have less lung and
pancreas involvement, but what will happen is unknown.  Like
Melissa said, my daughter didn't have any of the more common
mutations of the CF gene.  There are nearly 1500 different
mutations.  You have to have 2 genes to be considered CF.
 My daughter has one rare but well known mutation, and one
extremely rare and relatively unknown mutation (there are 6 people
worldwide that have it -- diagnosed anyway).  2 CF gene
mutations = CF, so my daughter will be CF for life.  While
there are no promises, we have been told it is likely that her less
severe mutation will control the symptoms.   There is a
lot that has been learned about CF in the last 20 years, but there
is still soooo much more to learn.<br>
<br>
Good luck, I hope your borderline results are NOT CF.
 
M

Mommafirst

Guest
Question about "Borderline

Yes, my daughter is considered CF.  We are hopeful that it
will be an atypical manifestation that will have less lung and
pancreas involvement, but what will happen is unknown.  Like
Melissa said, my daughter didn't have any of the more common
mutations of the CF gene.  There are nearly 1500 different
mutations.  You have to have 2 genes to be considered CF.
 My daughter has one rare but well known mutation, and one
extremely rare and relatively unknown mutation (there are 6 people
worldwide that have it -- diagnosed anyway).  2 CF gene
mutations = CF, so my daughter will be CF for life.  While
there are no promises, we have been told it is likely that her less
severe mutation will control the symptoms.   There is a
lot that has been learned about CF in the last 20 years, but there
is still soooo much more to learn.<br>
<br>
Good luck, I hope your borderline results are NOT CF.
 
M

Mommafirst

Guest
Question about "Borderline

Yes, my daughter is considered CF.  We are hopeful that it
will be an atypical manifestation that will have less lung and
pancreas involvement, but what will happen is unknown.  Like
Melissa said, my daughter didn't have any of the more common
mutations of the CF gene.  There are nearly 1500 different
mutations.  You have to have 2 genes to be considered CF.
 My daughter has one rare but well known mutation, and one
extremely rare and relatively unknown mutation (there are 6 people
worldwide that have it -- diagnosed anyway).  2 CF gene
mutations = CF, so my daughter will be CF for life.  While
there are no promises, we have been told it is likely that her less
severe mutation will control the symptoms.   There is a
lot that has been learned about CF in the last 20 years, but there
is still soooo much more to learn.<br>
<br>
Good luck, I hope your borderline results are NOT CF.
 

mic10467

New member
Question about "Borderline

I am 39 with CF and I have a younger brother, 34, who also has CF. We both have the Deltaf508 gene and were late diagnosed at the age of 18 and 15. My younger brother had a successful double lung transplant last October and my lung function is still quite good for a CFer at 73%. Recently my older brother had a son who was diagnosed at 3 months with Cystic Fibrosis also. My nephew was found to have a novel mutation Delta 3856. For some weird reason however, he did not have the Deltaf508, that my brother was a carrier for. After months of confusion by the doctors and experts, they sweat tested my older brother. Now he had borderline sweat results of I think of 52 in one arm and 57 in another. So unoffically they consider him to have CF, though they can't find his novel mutation on , though he had the extensive ambry tests. He has been the healthiest brother out of all of me and my four siblings. He can ride his bike 50 miles at a time and has not shown any signs of lung involvement. He has had some problems keeping weight on or digestive problems, but he is pretty darn healthy at the age of 41. I am hoping that the state of your child's cf will be as mild as his, if not even better. Just some info for ya.
 

mic10467

New member
Question about "Borderline

I am 39 with CF and I have a younger brother, 34, who also has CF. We both have the Deltaf508 gene and were late diagnosed at the age of 18 and 15. My younger brother had a successful double lung transplant last October and my lung function is still quite good for a CFer at 73%. Recently my older brother had a son who was diagnosed at 3 months with Cystic Fibrosis also. My nephew was found to have a novel mutation Delta 3856. For some weird reason however, he did not have the Deltaf508, that my brother was a carrier for. After months of confusion by the doctors and experts, they sweat tested my older brother. Now he had borderline sweat results of I think of 52 in one arm and 57 in another. So unoffically they consider him to have CF, though they can't find his novel mutation on , though he had the extensive ambry tests. He has been the healthiest brother out of all of me and my four siblings. He can ride his bike 50 miles at a time and has not shown any signs of lung involvement. He has had some problems keeping weight on or digestive problems, but he is pretty darn healthy at the age of 41. I am hoping that the state of your child's cf will be as mild as his, if not even better. Just some info for ya.
 

mic10467

New member
Question about "Borderline

I am 39 with CF and I have a younger brother, 34, who also has CF. We both have the Deltaf508 gene and were late diagnosed at the age of 18 and 15. My younger brother had a successful double lung transplant last October and my lung function is still quite good for a CFer at 73%. Recently my older brother had a son who was diagnosed at 3 months with Cystic Fibrosis also. My nephew was found to have a novel mutation Delta 3856. For some weird reason however, he did not have the Deltaf508, that my brother was a carrier for. After months of confusion by the doctors and experts, they sweat tested my older brother. Now he had borderline sweat results of I think of 52 in one arm and 57 in another. So unoffically they consider him to have CF, though they can't find his novel mutation on , though he had the extensive ambry tests. He has been the healthiest brother out of all of me and my four siblings. He can ride his bike 50 miles at a time and has not shown any signs of lung involvement. He has had some problems keeping weight on or digestive problems, but he is pretty darn healthy at the age of 41. I am hoping that the state of your child's cf will be as mild as his, if not even better. Just some info for ya.
 

Alyssa

New member
Question about "Borderline

Please read my blog (link at the bottom in my signature line) it give our personal experience and give the guidelines for sweat test result numbers.

Your question asking if the results this time are a good sign or not leads me to believe you are hoping the number changes his/her condition somehow (see below) -- like the other poster said, the difference is negligible -- the bigger question (in my opinion) is:

<b>Does this child have CF or not and what is the doctor doing to determine that so you can get the appropriate treatment for your child?</b>

What has happened in the last 14 months? Why would they wait so long to repeat the test?

Assuming the testing was done correctly at a certified center, they are probably very accurate and unlikely they will change over time -- the number is not an indicator that your child is "getting better" or "getting worse" like some other types of medical test might be. The sweat test is a diagnostic tool that indicates how well the sweat chloride channels are functioning -- if they are not functioning correctly that is a very good indicator that the genes responsible for causing that malfunction are the mutations associated with CF genes.

<b>Please be aggressive with the doctor and insist on full genetic testing</b> (blood test) for hopefully a better picture of whether or not your child has CF. The blood test is not 100% either because some people still have genes that have yet to be identified, but your chances of getting positive results when looking for over 1400 gene mutations is a whole lot better than just getting a borderline sweat test result.
 

Alyssa

New member
Question about "Borderline

Please read my blog (link at the bottom in my signature line) it give our personal experience and give the guidelines for sweat test result numbers.

Your question asking if the results this time are a good sign or not leads me to believe you are hoping the number changes his/her condition somehow (see below) -- like the other poster said, the difference is negligible -- the bigger question (in my opinion) is:

<b>Does this child have CF or not and what is the doctor doing to determine that so you can get the appropriate treatment for your child?</b>

What has happened in the last 14 months? Why would they wait so long to repeat the test?

Assuming the testing was done correctly at a certified center, they are probably very accurate and unlikely they will change over time -- the number is not an indicator that your child is "getting better" or "getting worse" like some other types of medical test might be. The sweat test is a diagnostic tool that indicates how well the sweat chloride channels are functioning -- if they are not functioning correctly that is a very good indicator that the genes responsible for causing that malfunction are the mutations associated with CF genes.

<b>Please be aggressive with the doctor and insist on full genetic testing</b> (blood test) for hopefully a better picture of whether or not your child has CF. The blood test is not 100% either because some people still have genes that have yet to be identified, but your chances of getting positive results when looking for over 1400 gene mutations is a whole lot better than just getting a borderline sweat test result.
 
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