To be or not to be...

F8AW8SU2 · Nov 1, 2007

Hi all,
I have been lurking on this board for a few months now but never posted. Just last week I had removed the link from my favorites because I thought we were out of the woods.

A little background info: I am here because of my second son Jacob, who is 20 months old. When he was 3 weeks old he came down with croup and was evaluated by our pediatrician who said to use a humidifier and keep an eye on him. My husband who was a Respiratory Therapist about 10 years ago (yes I know much has changed) said that he had concerns that it was CF. I'm not sure what made him think that.

Fast forward thorough about 5 more bouts of "croup" with wheezing and night time coughing to a hospitalization with pneumonia right after his first birthday and a possible diagnosis of asthma. He has been on pulmicort breathing treatments twice a day with increased dosages since Feb. of this year. Between Feb and July he was having an "asthma episode" at least every 2 to 4 weeks. I call it an episode because it lasts for days in which we have to use xopenex (sp?) on top of the pulmicort every 4 hours for at least 3 days along with oral steroids. He had an appointment with an Allergist back in July and his meds were upped and a sweat test was done. The tech told us that she wasn't sure enough was collected to even do the test, but I eventually got a result through the allergist's office. I was told it was negative and that the result was " 7 on both sides". I took this information and stopped thinking about cf.

Well we are back at square one. He had another asthma episode this week and we also inquired about the fact that he hasn't had a normal, formed stool in... well I can't even remember him ever having one! My pedi sent us out for another sweat test at a different hospital. It was done this morning. After telling the tech there that this was our second test, she inquired where I had the original done. After I told her, she informed me that if the test she was about to run was "over 50" then we would be referred back to the place we had the original test done. She explained to me that she did a screening and that the other hospital did diagnostic.

Ugh, I'm so confused!!! And I'm a Medical Lab Tech Hospital Corpsman in the Navy. I know just enough to be dangerous and terribly worried!! I got the results of today's test and it was 53. Now we have to go back to the children's hospital for another test!! I just want an answer <img src="i/expressions/face-icon-small-sad.gif" border="0">

Can anyone explain to me if there are different types of sweat tests?

Thank you if you have gotten this far! And huge hugs to all of you out there with cf kids.

Dori

F8AW8SU2 · Nov 1, 2007

Hi all,
I have been lurking on this board for a few months now but never posted. Just last week I had removed the link from my favorites because I thought we were out of the woods.

A little background info: I am here because of my second son Jacob, who is 20 months old. When he was 3 weeks old he came down with croup and was evaluated by our pediatrician who said to use a humidifier and keep an eye on him. My husband who was a Respiratory Therapist about 10 years ago (yes I know much has changed) said that he had concerns that it was CF. I'm not sure what made him think that.

Fast forward thorough about 5 more bouts of "croup" with wheezing and night time coughing to a hospitalization with pneumonia right after his first birthday and a possible diagnosis of asthma. He has been on pulmicort breathing treatments twice a day with increased dosages since Feb. of this year. Between Feb and July he was having an "asthma episode" at least every 2 to 4 weeks. I call it an episode because it lasts for days in which we have to use xopenex (sp?) on top of the pulmicort every 4 hours for at least 3 days along with oral steroids. He had an appointment with an Allergist back in July and his meds were upped and a sweat test was done. The tech told us that she wasn't sure enough was collected to even do the test, but I eventually got a result through the allergist's office. I was told it was negative and that the result was " 7 on both sides". I took this information and stopped thinking about cf.

Well we are back at square one. He had another asthma episode this week and we also inquired about the fact that he hasn't had a normal, formed stool in... well I can't even remember him ever having one! My pedi sent us out for another sweat test at a different hospital. It was done this morning. After telling the tech there that this was our second test, she inquired where I had the original done. After I told her, she informed me that if the test she was about to run was "over 50" then we would be referred back to the place we had the original test done. She explained to me that she did a screening and that the other hospital did diagnostic.

Ugh, I'm so confused!!! And I'm a Medical Lab Tech Hospital Corpsman in the Navy. I know just enough to be dangerous and terribly worried!! I got the results of today's test and it was 53. Now we have to go back to the children's hospital for another test!! I just want an answer <img src="i/expressions/face-icon-small-sad.gif" border="0">

Can anyone explain to me if there are different types of sweat tests?

Thank you if you have gotten this far! And huge hugs to all of you out there with cf kids.

Dori

F8AW8SU2 · Nov 1, 2007

Hi all,
I have been lurking on this board for a few months now but never posted. Just last week I had removed the link from my favorites because I thought we were out of the woods.

A little background info: I am here because of my second son Jacob, who is 20 months old. When he was 3 weeks old he came down with croup and was evaluated by our pediatrician who said to use a humidifier and keep an eye on him. My husband who was a Respiratory Therapist about 10 years ago (yes I know much has changed) said that he had concerns that it was CF. I'm not sure what made him think that.

Fast forward thorough about 5 more bouts of "croup" with wheezing and night time coughing to a hospitalization with pneumonia right after his first birthday and a possible diagnosis of asthma. He has been on pulmicort breathing treatments twice a day with increased dosages since Feb. of this year. Between Feb and July he was having an "asthma episode" at least every 2 to 4 weeks. I call it an episode because it lasts for days in which we have to use xopenex (sp?) on top of the pulmicort every 4 hours for at least 3 days along with oral steroids. He had an appointment with an Allergist back in July and his meds were upped and a sweat test was done. The tech told us that she wasn't sure enough was collected to even do the test, but I eventually got a result through the allergist's office. I was told it was negative and that the result was " 7 on both sides". I took this information and stopped thinking about cf.

Well we are back at square one. He had another asthma episode this week and we also inquired about the fact that he hasn't had a normal, formed stool in... well I can't even remember him ever having one! My pedi sent us out for another sweat test at a different hospital. It was done this morning. After telling the tech there that this was our second test, she inquired where I had the original done. After I told her, she informed me that if the test she was about to run was "over 50" then we would be referred back to the place we had the original test done. She explained to me that she did a screening and that the other hospital did diagnostic.

Ugh, I'm so confused!!! And I'm a Medical Lab Tech Hospital Corpsman in the Navy. I know just enough to be dangerous and terribly worried!! I got the results of today's test and it was 53. Now we have to go back to the children's hospital for another test!! I just want an answer <img src="i/expressions/face-icon-small-sad.gif" border="0">

Can anyone explain to me if there are different types of sweat tests?

Thank you if you have gotten this far! And huge hugs to all of you out there with cf kids.

Dori

F8AW8SU2 · Nov 1, 2007

Hi all,
I have been lurking on this board for a few months now but never posted. Just last week I had removed the link from my favorites because I thought we were out of the woods.

A little background info: I am here because of my second son Jacob, who is 20 months old. When he was 3 weeks old he came down with croup and was evaluated by our pediatrician who said to use a humidifier and keep an eye on him. My husband who was a Respiratory Therapist about 10 years ago (yes I know much has changed) said that he had concerns that it was CF. I'm not sure what made him think that.

Fast forward thorough about 5 more bouts of "croup" with wheezing and night time coughing to a hospitalization with pneumonia right after his first birthday and a possible diagnosis of asthma. He has been on pulmicort breathing treatments twice a day with increased dosages since Feb. of this year. Between Feb and July he was having an "asthma episode" at least every 2 to 4 weeks. I call it an episode because it lasts for days in which we have to use xopenex (sp?) on top of the pulmicort every 4 hours for at least 3 days along with oral steroids. He had an appointment with an Allergist back in July and his meds were upped and a sweat test was done. The tech told us that she wasn't sure enough was collected to even do the test, but I eventually got a result through the allergist's office. I was told it was negative and that the result was " 7 on both sides". I took this information and stopped thinking about cf.

Well we are back at square one. He had another asthma episode this week and we also inquired about the fact that he hasn't had a normal, formed stool in... well I can't even remember him ever having one! My pedi sent us out for another sweat test at a different hospital. It was done this morning. After telling the tech there that this was our second test, she inquired where I had the original done. After I told her, she informed me that if the test she was about to run was "over 50" then we would be referred back to the place we had the original test done. She explained to me that she did a screening and that the other hospital did diagnostic.

Ugh, I'm so confused!!! And I'm a Medical Lab Tech Hospital Corpsman in the Navy. I know just enough to be dangerous and terribly worried!! I got the results of today's test and it was 53. Now we have to go back to the children's hospital for another test!! I just want an answer <img src="i/expressions/face-icon-small-sad.gif" border="0">

Can anyone explain to me if there are different types of sweat tests?

Thank you if you have gotten this far! And huge hugs to all of you out there with cf kids.

Dori

F8AW8SU2 · Nov 1, 2007

Hi all,
I have been lurking on this board for a few months now but never posted. Just last week I had removed the link from my favorites because I thought we were out of the woods.

A little background info: I am here because of my second son Jacob, who is 20 months old. When he was 3 weeks old he came down with croup and was evaluated by our pediatrician who said to use a humidifier and keep an eye on him. My husband who was a Respiratory Therapist about 10 years ago (yes I know much has changed) said that he had concerns that it was CF. I'm not sure what made him think that.

Fast forward thorough about 5 more bouts of "croup" with wheezing and night time coughing to a hospitalization with pneumonia right after his first birthday and a possible diagnosis of asthma. He has been on pulmicort breathing treatments twice a day with increased dosages since Feb. of this year. Between Feb and July he was having an "asthma episode" at least every 2 to 4 weeks. I call it an episode because it lasts for days in which we have to use xopenex (sp?) on top of the pulmicort every 4 hours for at least 3 days along with oral steroids. He had an appointment with an Allergist back in July and his meds were upped and a sweat test was done. The tech told us that she wasn't sure enough was collected to even do the test, but I eventually got a result through the allergist's office. I was told it was negative and that the result was " 7 on both sides". I took this information and stopped thinking about cf.

Well we are back at square one. He had another asthma episode this week and we also inquired about the fact that he hasn't had a normal, formed stool in... well I can't even remember him ever having one! My pedi sent us out for another sweat test at a different hospital. It was done this morning. After telling the tech there that this was our second test, she inquired where I had the original done. After I told her, she informed me that if the test she was about to run was "over 50" then we would be referred back to the place we had the original test done. She explained to me that she did a screening and that the other hospital did diagnostic.

Ugh, I'm so confused!!! And I'm a Medical Lab Tech Hospital Corpsman in the Navy. I know just enough to be dangerous and terribly worried!! I got the results of today's test and it was 53. Now we have to go back to the children's hospital for another test!! I just want an answer <img src="i/expressions/face-icon-small-sad.gif" border="0">

Can anyone explain to me if there are different types of sweat tests?

Thank you if you have gotten this far! And huge hugs to all of you out there with cf kids.

Dori

JORDYSMOM · Nov 1, 2007

Hi Dori. I'm not sure why they need another sweat test, but it may have something to do with your insurance carrier. They may require two positive ones in order to get the ins co to pay for the genetic test. That test is a blood draw that they send in to a genetic lab to be checked for known CF gene mutations. Another pit fall there, is that a lot of ins companies make them do the less expensive tests for the 40 most common mutations and then they keep moving up to the next level. There are over 1800 mutations now, so it can take a while. Very annoying!! I went through this with my son, and I ended up paying Ambry out of my own pocket. Not cheap! Ambry is good about working with you on payment though.

Now that I've probably over explained that, let me tell you that there are people on this site with sweat test numbers that are considered to be "normal" or negative, but they have 2 CF mutations. You may have to push very hard, but do it. Get them to do the full panel genetic testing. It is the only way you will know for sure. Let us know what happens.

Stacey

JORDYSMOM · Nov 1, 2007

Hi Dori. I'm not sure why they need another sweat test, but it may have something to do with your insurance carrier. They may require two positive ones in order to get the ins co to pay for the genetic test. That test is a blood draw that they send in to a genetic lab to be checked for known CF gene mutations. Another pit fall there, is that a lot of ins companies make them do the less expensive tests for the 40 most common mutations and then they keep moving up to the next level. There are over 1800 mutations now, so it can take a while. Very annoying!! I went through this with my son, and I ended up paying Ambry out of my own pocket. Not cheap! Ambry is good about working with you on payment though.

Now that I've probably over explained that, let me tell you that there are people on this site with sweat test numbers that are considered to be "normal" or negative, but they have 2 CF mutations. You may have to push very hard, but do it. Get them to do the full panel genetic testing. It is the only way you will know for sure. Let us know what happens.

Stacey

JORDYSMOM · Nov 1, 2007

Hi Dori. I'm not sure why they need another sweat test, but it may have something to do with your insurance carrier. They may require two positive ones in order to get the ins co to pay for the genetic test. That test is a blood draw that they send in to a genetic lab to be checked for known CF gene mutations. Another pit fall there, is that a lot of ins companies make them do the less expensive tests for the 40 most common mutations and then they keep moving up to the next level. There are over 1800 mutations now, so it can take a while. Very annoying!! I went through this with my son, and I ended up paying Ambry out of my own pocket. Not cheap! Ambry is good about working with you on payment though.

Now that I've probably over explained that, let me tell you that there are people on this site with sweat test numbers that are considered to be "normal" or negative, but they have 2 CF mutations. You may have to push very hard, but do it. Get them to do the full panel genetic testing. It is the only way you will know for sure. Let us know what happens.

Stacey

JORDYSMOM · Nov 1, 2007

Hi Dori. I'm not sure why they need another sweat test, but it may have something to do with your insurance carrier. They may require two positive ones in order to get the ins co to pay for the genetic test. That test is a blood draw that they send in to a genetic lab to be checked for known CF gene mutations. Another pit fall there, is that a lot of ins companies make them do the less expensive tests for the 40 most common mutations and then they keep moving up to the next level. There are over 1800 mutations now, so it can take a while. Very annoying!! I went through this with my son, and I ended up paying Ambry out of my own pocket. Not cheap! Ambry is good about working with you on payment though.

Now that I've probably over explained that, let me tell you that there are people on this site with sweat test numbers that are considered to be "normal" or negative, but they have 2 CF mutations. You may have to push very hard, but do it. Get them to do the full panel genetic testing. It is the only way you will know for sure. Let us know what happens.

Stacey

JORDYSMOM · Nov 1, 2007

Hi Dori. I'm not sure why they need another sweat test, but it may have something to do with your insurance carrier. They may require two positive ones in order to get the ins co to pay for the genetic test. That test is a blood draw that they send in to a genetic lab to be checked for known CF gene mutations. Another pit fall there, is that a lot of ins companies make them do the less expensive tests for the 40 most common mutations and then they keep moving up to the next level. There are over 1800 mutations now, so it can take a while. Very annoying!! I went through this with my son, and I ended up paying Ambry out of my own pocket. Not cheap! Ambry is good about working with you on payment though.

Now that I've probably over explained that, let me tell you that there are people on this site with sweat test numbers that are considered to be "normal" or negative, but they have 2 CF mutations. You may have to push very hard, but do it. Get them to do the full panel genetic testing. It is the only way you will know for sure. Let us know what happens.

Stacey

purplemartin · Nov 1, 2007

I'm not to familiar with the protocols with the sweat test, some of the others here can probably help you better, but maybe what she meant was if the sweat test came back high (and a 53 is) that they would refer you back to the previous hospital for the actual diagnosis. Is the previous hospital a certified CF center, just curious as most places will refer you on to a certified center for diagnosis and medical care? I don't see the point of having to redo the sweat test, but maybe being genetically tested for the exact mutations and a diagnosis is what she meant.

I hope it all works out and hopefully you will get the answers you are looking for! ((HUGS))

purplemartin · Nov 1, 2007

I'm not to familiar with the protocols with the sweat test, some of the others here can probably help you better, but maybe what she meant was if the sweat test came back high (and a 53 is) that they would refer you back to the previous hospital for the actual diagnosis. Is the previous hospital a certified CF center, just curious as most places will refer you on to a certified center for diagnosis and medical care? I don't see the point of having to redo the sweat test, but maybe being genetically tested for the exact mutations and a diagnosis is what she meant.

I hope it all works out and hopefully you will get the answers you are looking for! ((HUGS))

purplemartin · Nov 1, 2007

I'm not to familiar with the protocols with the sweat test, some of the others here can probably help you better, but maybe what she meant was if the sweat test came back high (and a 53 is) that they would refer you back to the previous hospital for the actual diagnosis. Is the previous hospital a certified CF center, just curious as most places will refer you on to a certified center for diagnosis and medical care? I don't see the point of having to redo the sweat test, but maybe being genetically tested for the exact mutations and a diagnosis is what she meant.

I hope it all works out and hopefully you will get the answers you are looking for! ((HUGS))

purplemartin · Nov 1, 2007

I'm not to familiar with the protocols with the sweat test, some of the others here can probably help you better, but maybe what she meant was if the sweat test came back high (and a 53 is) that they would refer you back to the previous hospital for the actual diagnosis. Is the previous hospital a certified CF center, just curious as most places will refer you on to a certified center for diagnosis and medical care? I don't see the point of having to redo the sweat test, but maybe being genetically tested for the exact mutations and a diagnosis is what she meant.

I hope it all works out and hopefully you will get the answers you are looking for! ((HUGS))

purplemartin · Nov 1, 2007

I'm not to familiar with the protocols with the sweat test, some of the others here can probably help you better, but maybe what she meant was if the sweat test came back high (and a 53 is) that they would refer you back to the previous hospital for the actual diagnosis. Is the previous hospital a certified CF center, just curious as most places will refer you on to a certified center for diagnosis and medical care? I don't see the point of having to redo the sweat test, but maybe being genetically tested for the exact mutations and a diagnosis is what she meant.

I hope it all works out and hopefully you will get the answers you are looking for! ((HUGS))

Alyssa · Nov 1, 2007

I don't have much new to add from the other posters - and I am also confused as to why they would bounce you back and forth -- BUT I have a hunch that the first one you did was inaccurate for whatever reason. But I'd be willing to bet the wheels will start turning now with a sweat test of 53 -- that is still in the borderline area but it should be high enough (along with the classic CF symptoms) to get someone to seriously consider and even diagnose CF without any more testing -- however more testing certainly needs to be done to insure his correct diagnosis and treatment .... they should do genetic testing - and as others have said there are now 1800 mutations to look for -- do not agree to one of the cheaper (less extensive) tests for something like 40 or 98 mutations... unless they promise you they will move forward with full testing immediately if they do not find any genes on the smaller test numbers. Then... they should also get you in with a GI for fecal fat testing to check for pancreatic sufficiency.

If you want to try and figure out why they may be bouncing you between facilities check the CFF.org website and figure out which facility is a certified facility -- that is the one who should be doing the testing, diagnosing & treating.

Best of wishes -- sorry you are back here on the site -- but it is always a very good thing to know for sure what you are dealing with so it can be correctly treated.... misdiagnoses or undiagnosed CF is a dangerous thing.

Alyssa · Nov 1, 2007

I don't have much new to add from the other posters - and I am also confused as to why they would bounce you back and forth -- BUT I have a hunch that the first one you did was inaccurate for whatever reason. But I'd be willing to bet the wheels will start turning now with a sweat test of 53 -- that is still in the borderline area but it should be high enough (along with the classic CF symptoms) to get someone to seriously consider and even diagnose CF without any more testing -- however more testing certainly needs to be done to insure his correct diagnosis and treatment .... they should do genetic testing - and as others have said there are now 1800 mutations to look for -- do not agree to one of the cheaper (less extensive) tests for something like 40 or 98 mutations... unless they promise you they will move forward with full testing immediately if they do not find any genes on the smaller test numbers. Then... they should also get you in with a GI for fecal fat testing to check for pancreatic sufficiency.

If you want to try and figure out why they may be bouncing you between facilities check the CFF.org website and figure out which facility is a certified facility -- that is the one who should be doing the testing, diagnosing & treating.

Best of wishes -- sorry you are back here on the site -- but it is always a very good thing to know for sure what you are dealing with so it can be correctly treated.... misdiagnoses or undiagnosed CF is a dangerous thing.

Alyssa · Nov 1, 2007

I don't have much new to add from the other posters - and I am also confused as to why they would bounce you back and forth -- BUT I have a hunch that the first one you did was inaccurate for whatever reason. But I'd be willing to bet the wheels will start turning now with a sweat test of 53 -- that is still in the borderline area but it should be high enough (along with the classic CF symptoms) to get someone to seriously consider and even diagnose CF without any more testing -- however more testing certainly needs to be done to insure his correct diagnosis and treatment .... they should do genetic testing - and as others have said there are now 1800 mutations to look for -- do not agree to one of the cheaper (less extensive) tests for something like 40 or 98 mutations... unless they promise you they will move forward with full testing immediately if they do not find any genes on the smaller test numbers. Then... they should also get you in with a GI for fecal fat testing to check for pancreatic sufficiency.

If you want to try and figure out why they may be bouncing you between facilities check the CFF.org website and figure out which facility is a certified facility -- that is the one who should be doing the testing, diagnosing & treating.

Best of wishes -- sorry you are back here on the site -- but it is always a very good thing to know for sure what you are dealing with so it can be correctly treated.... misdiagnoses or undiagnosed CF is a dangerous thing.

Alyssa · Nov 1, 2007

I don't have much new to add from the other posters - and I am also confused as to why they would bounce you back and forth -- BUT I have a hunch that the first one you did was inaccurate for whatever reason. But I'd be willing to bet the wheels will start turning now with a sweat test of 53 -- that is still in the borderline area but it should be high enough (along with the classic CF symptoms) to get someone to seriously consider and even diagnose CF without any more testing -- however more testing certainly needs to be done to insure his correct diagnosis and treatment .... they should do genetic testing - and as others have said there are now 1800 mutations to look for -- do not agree to one of the cheaper (less extensive) tests for something like 40 or 98 mutations... unless they promise you they will move forward with full testing immediately if they do not find any genes on the smaller test numbers. Then... they should also get you in with a GI for fecal fat testing to check for pancreatic sufficiency.

If you want to try and figure out why they may be bouncing you between facilities check the CFF.org website and figure out which facility is a certified facility -- that is the one who should be doing the testing, diagnosing & treating.

Best of wishes -- sorry you are back here on the site -- but it is always a very good thing to know for sure what you are dealing with so it can be correctly treated.... misdiagnoses or undiagnosed CF is a dangerous thing.

Alyssa · Nov 1, 2007

I don't have much new to add from the other posters - and I am also confused as to why they would bounce you back and forth -- BUT I have a hunch that the first one you did was inaccurate for whatever reason. But I'd be willing to bet the wheels will start turning now with a sweat test of 53 -- that is still in the borderline area but it should be high enough (along with the classic CF symptoms) to get someone to seriously consider and even diagnose CF without any more testing -- however more testing certainly needs to be done to insure his correct diagnosis and treatment .... they should do genetic testing - and as others have said there are now 1800 mutations to look for -- do not agree to one of the cheaper (less extensive) tests for something like 40 or 98 mutations... unless they promise you they will move forward with full testing immediately if they do not find any genes on the smaller test numbers. Then... they should also get you in with a GI for fecal fat testing to check for pancreatic sufficiency.

If you want to try and figure out why they may be bouncing you between facilities check the CFF.org website and figure out which facility is a certified facility -- that is the one who should be doing the testing, diagnosing & treating.

Best of wishes -- sorry you are back here on the site -- but it is always a very good thing to know for sure what you are dealing with so it can be correctly treated.... misdiagnoses or undiagnosed CF is a dangerous thing.

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