"Borderline" sweat test, now awaiting blood test results

duckfam · Dec 31, 2008

Hi everyone. My son is 11 years old and has struggled with asthma since he was a baby. He has had 5 sets of tubes in his ears, with his first ear infection at 1 week old. He has complained of stomach pains and has had reflux for years.

However, he has no issues with failure to thrive. He weighed over 9 lbs at birth and now weighs more than I did when I got married. His feet are bigger than mine and he's taller than my mother-in-law. If this is failure to thrive, I'd hate to see what he'd look otherwise. <img src="i/expressions/face-icon-small-wink.gif" border="0">

After finally getting a referral to an asthma/allergy doc in our new town, she ran tests on him that have never been run. She ordered a sweat test, thinking he could possibily have "mild cystic fibrosis". That was done on Christmas Eve. (Merry Christmas to us...)

His 2 samples were 48 and 50. They then ordered a genotype. That was drawn yesterday, so now we are waiting for those results.

The asthma/allergy doc is waiting for those results before determining a diagnosis or giving a referral to the pulmonolgist. However, his "regular doc" who referred us to the asthma doc has already commented that he has CF and mentioned how important it is for us to set good examples for good nutrition, exercise, keep on his meds, etc.

Just as a side note, my husband had a positive CF test when he was 2 years old, but then it was negative when they did a follow-up test. Interesting. I'd like to see the genotyping on him sometime in the future if my son's is positive.

So, those of you who are not so new at this, what are your opinions?

duckfam · Dec 31, 2008

Hi everyone. My son is 11 years old and has struggled with asthma since he was a baby. He has had 5 sets of tubes in his ears, with his first ear infection at 1 week old. He has complained of stomach pains and has had reflux for years.

However, he has no issues with failure to thrive. He weighed over 9 lbs at birth and now weighs more than I did when I got married. His feet are bigger than mine and he's taller than my mother-in-law. If this is failure to thrive, I'd hate to see what he'd look otherwise. <img src="i/expressions/face-icon-small-wink.gif" border="0">

After finally getting a referral to an asthma/allergy doc in our new town, she ran tests on him that have never been run. She ordered a sweat test, thinking he could possibily have "mild cystic fibrosis". That was done on Christmas Eve. (Merry Christmas to us...)

His 2 samples were 48 and 50. They then ordered a genotype. That was drawn yesterday, so now we are waiting for those results.

The asthma/allergy doc is waiting for those results before determining a diagnosis or giving a referral to the pulmonolgist. However, his "regular doc" who referred us to the asthma doc has already commented that he has CF and mentioned how important it is for us to set good examples for good nutrition, exercise, keep on his meds, etc.

Just as a side note, my husband had a positive CF test when he was 2 years old, but then it was negative when they did a follow-up test. Interesting. I'd like to see the genotyping on him sometime in the future if my son's is positive.

So, those of you who are not so new at this, what are your opinions?

duckfam · Dec 31, 2008

Hi everyone. My son is 11 years old and has struggled with asthma since he was a baby. He has had 5 sets of tubes in his ears, with his first ear infection at 1 week old. He has complained of stomach pains and has had reflux for years.

However, he has no issues with failure to thrive. He weighed over 9 lbs at birth and now weighs more than I did when I got married. His feet are bigger than mine and he's taller than my mother-in-law. If this is failure to thrive, I'd hate to see what he'd look otherwise. <img src="i/expressions/face-icon-small-wink.gif" border="0">

After finally getting a referral to an asthma/allergy doc in our new town, she ran tests on him that have never been run. She ordered a sweat test, thinking he could possibily have "mild cystic fibrosis". That was done on Christmas Eve. (Merry Christmas to us...)

His 2 samples were 48 and 50. They then ordered a genotype. That was drawn yesterday, so now we are waiting for those results.

The asthma/allergy doc is waiting for those results before determining a diagnosis or giving a referral to the pulmonolgist. However, his "regular doc" who referred us to the asthma doc has already commented that he has CF and mentioned how important it is for us to set good examples for good nutrition, exercise, keep on his meds, etc.

Just as a side note, my husband had a positive CF test when he was 2 years old, but then it was negative when they did a follow-up test. Interesting. I'd like to see the genotyping on him sometime in the future if my son's is positive.

So, those of you who are not so new at this, what are your opinions?

duckfam · Dec 31, 2008

Hi everyone. My son is 11 years old and has struggled with asthma since he was a baby. He has had 5 sets of tubes in his ears, with his first ear infection at 1 week old. He has complained of stomach pains and has had reflux for years.

However, he has no issues with failure to thrive. He weighed over 9 lbs at birth and now weighs more than I did when I got married. His feet are bigger than mine and he's taller than my mother-in-law. If this is failure to thrive, I'd hate to see what he'd look otherwise. <img src="i/expressions/face-icon-small-wink.gif" border="0">

After finally getting a referral to an asthma/allergy doc in our new town, she ran tests on him that have never been run. She ordered a sweat test, thinking he could possibily have "mild cystic fibrosis". That was done on Christmas Eve. (Merry Christmas to us...)

His 2 samples were 48 and 50. They then ordered a genotype. That was drawn yesterday, so now we are waiting for those results.

The asthma/allergy doc is waiting for those results before determining a diagnosis or giving a referral to the pulmonolgist. However, his "regular doc" who referred us to the asthma doc has already commented that he has CF and mentioned how important it is for us to set good examples for good nutrition, exercise, keep on his meds, etc.

Just as a side note, my husband had a positive CF test when he was 2 years old, but then it was negative when they did a follow-up test. Interesting. I'd like to see the genotyping on him sometime in the future if my son's is positive.

So, those of you who are not so new at this, what are your opinions?

duckfam · Dec 31, 2008

Hi everyone. My son is 11 years old and has struggled with asthma since he was a baby. He has had 5 sets of tubes in his ears, with his first ear infection at 1 week old. He has complained of stomach pains and has had reflux for years.
 
 However, he has no issues with failure to thrive. He weighed over 9 lbs at birth and now weighs more than I did when I got married. His feet are bigger than mine and he's taller than my mother-in-law. If this is failure to thrive, I'd hate to see what he'd look otherwise. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
 After finally getting a referral to an asthma/allergy doc in our new town, she ran tests on him that have never been run. She ordered a sweat test, thinking he could possibily have "mild cystic fibrosis". That was done on Christmas Eve. (Merry Christmas to us...)
 
 His 2 samples were 48 and 50. They then ordered a genotype. That was drawn yesterday, so now we are waiting for those results.
 
 The asthma/allergy doc is waiting for those results before determining a diagnosis or giving a referral to the pulmonolgist. However, his "regular doc" who referred us to the asthma doc has already commented that he has CF and mentioned how important it is for us to set good examples for good nutrition, exercise, keep on his meds, etc.
 
 Just as a side note, my husband had a positive CF test when he was 2 years old, but then it was negative when they did a follow-up test. Interesting. I'd like to see the genotyping on him sometime in the future if my son's is positive.
 
 So, those of you who are not so new at this, what are your opinions?

Mommafirst · Dec 31, 2008

"Borderline

From what I've seen, a borderline sweat is not necessarily = to CF, but it sure does raise the suspicion meter, if you know what I mean. There aren't a lot of reasons for a child to have elevated sweat chlorides, but still, I think waiting until you know genetically for sure is prudent.

If your son does have CF, he wouldn't be alone in being one that doesn't have FTT. Not all CFers exhibit every single symptom. Some CFers are pancreatic sufficient and since their pancreas works, they don't experience as much digestive issues and those who are pancreatic insufficient.

My daughter had a borderline sweat test and it was very frustrating waiting and being stuck in the unknown. I hope you get answers soon.

Mommafirst · Dec 31, 2008

"Borderline

From what I've seen, a borderline sweat is not necessarily = to CF, but it sure does raise the suspicion meter, if you know what I mean. There aren't a lot of reasons for a child to have elevated sweat chlorides, but still, I think waiting until you know genetically for sure is prudent.

If your son does have CF, he wouldn't be alone in being one that doesn't have FTT. Not all CFers exhibit every single symptom. Some CFers are pancreatic sufficient and since their pancreas works, they don't experience as much digestive issues and those who are pancreatic insufficient.

My daughter had a borderline sweat test and it was very frustrating waiting and being stuck in the unknown. I hope you get answers soon.

Mommafirst · Dec 31, 2008

"Borderline

From what I've seen, a borderline sweat is not necessarily = to CF, but it sure does raise the suspicion meter, if you know what I mean. There aren't a lot of reasons for a child to have elevated sweat chlorides, but still, I think waiting until you know genetically for sure is prudent.

If your son does have CF, he wouldn't be alone in being one that doesn't have FTT. Not all CFers exhibit every single symptom. Some CFers are pancreatic sufficient and since their pancreas works, they don't experience as much digestive issues and those who are pancreatic insufficient.

My daughter had a borderline sweat test and it was very frustrating waiting and being stuck in the unknown. I hope you get answers soon.

Mommafirst · Dec 31, 2008

"Borderline

From what I've seen, a borderline sweat is not necessarily = to CF, but it sure does raise the suspicion meter, if you know what I mean. There aren't a lot of reasons for a child to have elevated sweat chlorides, but still, I think waiting until you know genetically for sure is prudent.

If your son does have CF, he wouldn't be alone in being one that doesn't have FTT. Not all CFers exhibit every single symptom. Some CFers are pancreatic sufficient and since their pancreas works, they don't experience as much digestive issues and those who are pancreatic insufficient.

My daughter had a borderline sweat test and it was very frustrating waiting and being stuck in the unknown. I hope you get answers soon.

Mommafirst · Dec 31, 2008

"Borderline

From what I've seen, a borderline sweat is not necessarily = to CF, but it sure does raise the suspicion meter, if you know what I mean. There aren't a lot of reasons for a child to have elevated sweat chlorides, but still, I think waiting until you know genetically for sure is prudent.
 
 If your son does have CF, he wouldn't be alone in being one that doesn't have FTT. Not all CFers exhibit every single symptom. Some CFers are pancreatic sufficient and since their pancreas works, they don't experience as much digestive issues and those who are pancreatic insufficient.
 
 My daughter had a borderline sweat test and it was very frustrating waiting and being stuck in the unknown. I hope you get answers soon.

Alyssa · Jan 1, 2009

"Borderline

My daughter has a "normal" sweat test number at 38, and my son tests out just barely into "borderline" with 41. Genetic testing found two CF genes.

They are now 20 and 22 years old and doing great (see my blog for more details)

They are both pancreatic sufficient, so digestive problems are not an issue.

Yes, that is interesting about your husbands tests.

Do you know how many genes they are testing your son for? If they don't find any, and have tested for anything less than ALL known genes (over 1500 of them) please insist on retesting for all genes.

Best wishes and keep us posted.

Alyssa · Jan 1, 2009

"Borderline

My daughter has a "normal" sweat test number at 38, and my son tests out just barely into "borderline" with 41. Genetic testing found two CF genes.

They are now 20 and 22 years old and doing great (see my blog for more details)

They are both pancreatic sufficient, so digestive problems are not an issue.

Yes, that is interesting about your husbands tests.

Do you know how many genes they are testing your son for? If they don't find any, and have tested for anything less than ALL known genes (over 1500 of them) please insist on retesting for all genes.

Best wishes and keep us posted.

Alyssa · Jan 1, 2009

"Borderline

My daughter has a "normal" sweat test number at 38, and my son tests out just barely into "borderline" with 41. Genetic testing found two CF genes.

They are now 20 and 22 years old and doing great (see my blog for more details)

They are both pancreatic sufficient, so digestive problems are not an issue.

Yes, that is interesting about your husbands tests.

Do you know how many genes they are testing your son for? If they don't find any, and have tested for anything less than ALL known genes (over 1500 of them) please insist on retesting for all genes.

Best wishes and keep us posted.

Alyssa · Jan 1, 2009

"Borderline

My daughter has a "normal" sweat test number at 38, and my son tests out just barely into "borderline" with 41. Genetic testing found two CF genes.

They are now 20 and 22 years old and doing great (see my blog for more details)

They are both pancreatic sufficient, so digestive problems are not an issue.

Yes, that is interesting about your husbands tests.

Do you know how many genes they are testing your son for? If they don't find any, and have tested for anything less than ALL known genes (over 1500 of them) please insist on retesting for all genes.

Best wishes and keep us posted.

Alyssa · Jan 1, 2009

"Borderline

My daughter has a "normal" sweat test number at 38, and my son tests out just barely into "borderline" with 41. Genetic testing found two CF genes.
 
 They are now 20 and 22 years old and doing great (see my blog for more details)
 
 They are both pancreatic sufficient, so digestive problems are not an issue.
 
 Yes, that is interesting about your husbands tests.
 
 Do you know how many genes they are testing your son for? If they don't find any, and have tested for anything less than ALL known genes (over 1500 of them) please insist on retesting for all genes.
 
 Best wishes and keep us posted.

hmw · Jan 4, 2009

"Borderline

I'm so sorry that you have been through so much already with your son and now are playing the Hurry Up and Wait Game while the labs are being done. I hate that game. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

We are in a similar wait and see situation with my 11.5yr old son.
His 7.5yr old sister was dx'ed w/ cf and so they tested him and his brother. His sweat test came back with a 48, so they are doing the gene analysis on him too, since they cannot determine whether or not he has it by that number. Any symptoms he has aren't really definitive either way either. Of course, a few things look suspicious NOW, but I'd just chalked up a couple yrs of severe sinus congestion to allergies, and really nasty bathroom stuff to well, that was just 'him', you know? And so, I just continue to hope that it's just him. He was a moose as a baby/toddler (we called him the Michelin baby, lol) and never even started slimming down until he was about 6 and certainly has never had ftt to date. (He's about 80lbs, 4'8" or so now. He's not at the top of the charts but he's right in the middle.) So, we wait and see too.

I wish the very best for you and your son, in finding out what is going on so you can get him as healthy as possible.

hmw · Jan 4, 2009

"Borderline

I'm so sorry that you have been through so much already with your son and now are playing the Hurry Up and Wait Game while the labs are being done. I hate that game. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

We are in a similar wait and see situation with my 11.5yr old son.
His 7.5yr old sister was dx'ed w/ cf and so they tested him and his brother. His sweat test came back with a 48, so they are doing the gene analysis on him too, since they cannot determine whether or not he has it by that number. Any symptoms he has aren't really definitive either way either. Of course, a few things look suspicious NOW, but I'd just chalked up a couple yrs of severe sinus congestion to allergies, and really nasty bathroom stuff to well, that was just 'him', you know? And so, I just continue to hope that it's just him. He was a moose as a baby/toddler (we called him the Michelin baby, lol) and never even started slimming down until he was about 6 and certainly has never had ftt to date. (He's about 80lbs, 4'8" or so now. He's not at the top of the charts but he's right in the middle.) So, we wait and see too.

I wish the very best for you and your son, in finding out what is going on so you can get him as healthy as possible.

hmw · Jan 4, 2009

"Borderline

I'm so sorry that you have been through so much already with your son and now are playing the Hurry Up and Wait Game while the labs are being done. I hate that game. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

We are in a similar wait and see situation with my 11.5yr old son.
His 7.5yr old sister was dx'ed w/ cf and so they tested him and his brother. His sweat test came back with a 48, so they are doing the gene analysis on him too, since they cannot determine whether or not he has it by that number. Any symptoms he has aren't really definitive either way either. Of course, a few things look suspicious NOW, but I'd just chalked up a couple yrs of severe sinus congestion to allergies, and really nasty bathroom stuff to well, that was just 'him', you know? And so, I just continue to hope that it's just him. He was a moose as a baby/toddler (we called him the Michelin baby, lol) and never even started slimming down until he was about 6 and certainly has never had ftt to date. (He's about 80lbs, 4'8" or so now. He's not at the top of the charts but he's right in the middle.) So, we wait and see too.

I wish the very best for you and your son, in finding out what is going on so you can get him as healthy as possible.

hmw · Jan 4, 2009

"Borderline

I'm so sorry that you have been through so much already with your son and now are playing the Hurry Up and Wait Game while the labs are being done. I hate that game. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

We are in a similar wait and see situation with my 11.5yr old son.
His 7.5yr old sister was dx'ed w/ cf and so they tested him and his brother. His sweat test came back with a 48, so they are doing the gene analysis on him too, since they cannot determine whether or not he has it by that number. Any symptoms he has aren't really definitive either way either. Of course, a few things look suspicious NOW, but I'd just chalked up a couple yrs of severe sinus congestion to allergies, and really nasty bathroom stuff to well, that was just 'him', you know? And so, I just continue to hope that it's just him. He was a moose as a baby/toddler (we called him the Michelin baby, lol) and never even started slimming down until he was about 6 and certainly has never had ftt to date. (He's about 80lbs, 4'8" or so now. He's not at the top of the charts but he's right in the middle.) So, we wait and see too.

I wish the very best for you and your son, in finding out what is going on so you can get him as healthy as possible.

hmw · Jan 4, 2009

"Borderline

I'm so sorry that you have been through so much already with your son and now are playing the Hurry Up and Wait Game while the labs are being done. I hate that game. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">
 
 We are in a similar wait and see situation with my 11.5yr old son.
 His 7.5yr old sister was dx'ed w/ cf and so they tested him and his brother. His sweat test came back with a 48, so they are doing the gene analysis on him too, since they cannot determine whether or not he has it by that number. Any symptoms he has aren't really definitive either way either. Of course, a few things look suspicious NOW, but I'd just chalked up a couple yrs of severe sinus congestion to allergies, and really nasty bathroom stuff to well, that was just 'him', you know? And so, I just continue to hope that it's just him. He was a moose as a baby/toddler (we called him the Michelin baby, lol) and never even started slimming down until he was about 6 and certainly has never had ftt to date. (He's about 80lbs, 4'8" or so now. He's not at the top of the charts but he's right in the middle.) So, we wait and see too.
 
 I wish the very best for you and your son, in finding out what is going on so you can get him as healthy as possible.

"Borderline" sweat test, now awaiting blood test results

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