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Mommafirst · May 27, 2009

Brenda -- I have no statistic for you, nor do I have a place you can go to find it. But annecdotally, I can't remember any high borderline sweat tests reported on this board that turned into a negative CF. I know I looked, my daughters sweat test was a 53 and it all sounded so hopeful from the doctors, but then I realized here that it might not be so.

While I don't know about people who post a sweat and don't come back and update, I do know that in the three years I've been a member here -- unless there was an error in the sweat collection -- most high borderline sweats turned into positive CF diagnosis.

I know you don't want to hear this. I'm so sorry -- I hate to post this because I don't know your child and I'm not a doctor. I hope you can prove my annecdotal evidence wrong.

Mommafirst · May 27, 2009

Brenda -- I have no statistic for you, nor do I have a place you can go to find it. But annecdotally, I can't remember any high borderline sweat tests reported on this board that turned into a negative CF. I know I looked, my daughters sweat test was a 53 and it all sounded so hopeful from the doctors, but then I realized here that it might not be so.

While I don't know about people who post a sweat and don't come back and update, I do know that in the three years I've been a member here -- unless there was an error in the sweat collection -- most high borderline sweats turned into positive CF diagnosis.

I know you don't want to hear this. I'm so sorry -- I hate to post this because I don't know your child and I'm not a doctor. I hope you can prove my annecdotal evidence wrong.

Mommafirst · May 27, 2009

Brenda -- I have no statistic for you, nor do I have a place you can go to find it. But annecdotally, I can't remember any high borderline sweat tests reported on this board that turned into a negative CF. I know I looked, my daughters sweat test was a 53 and it all sounded so hopeful from the doctors, but then I realized here that it might not be so.

While I don't know about people who post a sweat and don't come back and update, I do know that in the three years I've been a member here -- unless there was an error in the sweat collection -- most high borderline sweats turned into positive CF diagnosis.

I know you don't want to hear this. I'm so sorry -- I hate to post this because I don't know your child and I'm not a doctor. I hope you can prove my annecdotal evidence wrong.

Mommafirst · May 27, 2009

Brenda -- I have no statistic for you, nor do I have a place you can go to find it. But annecdotally, I can't remember any high borderline sweat tests reported on this board that turned into a negative CF. I know I looked, my daughters sweat test was a 53 and it all sounded so hopeful from the doctors, but then I realized here that it might not be so.

While I don't know about people who post a sweat and don't come back and update, I do know that in the three years I've been a member here -- unless there was an error in the sweat collection -- most high borderline sweats turned into positive CF diagnosis.

I know you don't want to hear this. I'm so sorry -- I hate to post this because I don't know your child and I'm not a doctor. I hope you can prove my annecdotal evidence wrong.

Mommafirst · May 27, 2009

Brenda -- I have no statistic for you, nor do I have a place you can go to find it. But annecdotally, I can't remember any high borderline sweat tests reported on this board that turned into a negative CF. I know I looked, my daughters sweat test was a 53 and it all sounded so hopeful from the doctors, but then I realized here that it might not be so.
 
 While I don't know about people who post a sweat and don't come back and update, I do know that in the three years I've been a member here -- unless there was an error in the sweat collection -- most high borderline sweats turned into positive CF diagnosis.
 
 I know you don't want to hear this. I'm so sorry -- I hate to post this because I don't know your child and I'm not a doctor. I hope you can prove my annecdotal evidence wrong.

stringbean · May 27, 2009

Brenda,
I can totally relate to what you are going through. Despite all assurances that my daughter does not present a compelling case for CF, her sweat test came back borderline. I googled borderline CF, atypical CF, pancreatic insuffiency -- you name it, I googled it. I read a ton of information, but never found the answer to my question, which was: does a result over 40 ever turn out not to be CF? Her next sweat test came out borderline again. I was still assured that she doesn't have it. I was told the genetics test could tell us that she has CF, but it can't rule it out. She does have a mutation, but I'm still told she doesn't have CF.

I asked her doctor if anything other than CF can produce a borderline result and he said "malnutrition". I guess with the somewhat severe pancreatic insufficiency they discovered, that's a possibility. She's on enzymes now, but still not gaining any weight. Once she puts on a couple of pounds, I think we have to do the sweat test again.

It is so incredibly frustrating. We had the sweat test done in Jan; we got the genetics test back at the end of March and we still don't have a diagnosis. We see her gastroenterologist next week and I'm going to ask a few more questions. (The pulmonologist is supposed to make the call and she has an awful bedside manner. When I asked her a question, she gave me the name of another doctor and told me to get a second opinion.) My daughter either has CF OR she is a carrier, with malnutrition, asthma, and Johannson Blizzard Syndrome (which would explain her PI. JBS is so rare there aren't any labs in the US that test for it -- it would have to go to a lab in Europe.) It all sounds a little crazy to me...

For the first several weeks, I went insane trying to figure things out. Some days I still feel that way. But most of the time I figure that she's getting the treatment she needs, so I can wait while they dither around about what is causing her PI. I can't tell you to relax because I know I couldn't. Not for a second. But eventually, even though we don't have an answer, I did begin to relax.

Best wishes to you. I'm sorry for what you are going through!

stringbean · May 27, 2009

Brenda,
I can totally relate to what you are going through. Despite all assurances that my daughter does not present a compelling case for CF, her sweat test came back borderline. I googled borderline CF, atypical CF, pancreatic insuffiency -- you name it, I googled it. I read a ton of information, but never found the answer to my question, which was: does a result over 40 ever turn out not to be CF? Her next sweat test came out borderline again. I was still assured that she doesn't have it. I was told the genetics test could tell us that she has CF, but it can't rule it out. She does have a mutation, but I'm still told she doesn't have CF.

I asked her doctor if anything other than CF can produce a borderline result and he said "malnutrition". I guess with the somewhat severe pancreatic insufficiency they discovered, that's a possibility. She's on enzymes now, but still not gaining any weight. Once she puts on a couple of pounds, I think we have to do the sweat test again.

It is so incredibly frustrating. We had the sweat test done in Jan; we got the genetics test back at the end of March and we still don't have a diagnosis. We see her gastroenterologist next week and I'm going to ask a few more questions. (The pulmonologist is supposed to make the call and she has an awful bedside manner. When I asked her a question, she gave me the name of another doctor and told me to get a second opinion.) My daughter either has CF OR she is a carrier, with malnutrition, asthma, and Johannson Blizzard Syndrome (which would explain her PI. JBS is so rare there aren't any labs in the US that test for it -- it would have to go to a lab in Europe.) It all sounds a little crazy to me...

For the first several weeks, I went insane trying to figure things out. Some days I still feel that way. But most of the time I figure that she's getting the treatment she needs, so I can wait while they dither around about what is causing her PI. I can't tell you to relax because I know I couldn't. Not for a second. But eventually, even though we don't have an answer, I did begin to relax.

Best wishes to you. I'm sorry for what you are going through!

stringbean · May 27, 2009

Brenda,
I can totally relate to what you are going through. Despite all assurances that my daughter does not present a compelling case for CF, her sweat test came back borderline. I googled borderline CF, atypical CF, pancreatic insuffiency -- you name it, I googled it. I read a ton of information, but never found the answer to my question, which was: does a result over 40 ever turn out not to be CF? Her next sweat test came out borderline again. I was still assured that she doesn't have it. I was told the genetics test could tell us that she has CF, but it can't rule it out. She does have a mutation, but I'm still told she doesn't have CF.

I asked her doctor if anything other than CF can produce a borderline result and he said "malnutrition". I guess with the somewhat severe pancreatic insufficiency they discovered, that's a possibility. She's on enzymes now, but still not gaining any weight. Once she puts on a couple of pounds, I think we have to do the sweat test again.

It is so incredibly frustrating. We had the sweat test done in Jan; we got the genetics test back at the end of March and we still don't have a diagnosis. We see her gastroenterologist next week and I'm going to ask a few more questions. (The pulmonologist is supposed to make the call and she has an awful bedside manner. When I asked her a question, she gave me the name of another doctor and told me to get a second opinion.) My daughter either has CF OR she is a carrier, with malnutrition, asthma, and Johannson Blizzard Syndrome (which would explain her PI. JBS is so rare there aren't any labs in the US that test for it -- it would have to go to a lab in Europe.) It all sounds a little crazy to me...

For the first several weeks, I went insane trying to figure things out. Some days I still feel that way. But most of the time I figure that she's getting the treatment she needs, so I can wait while they dither around about what is causing her PI. I can't tell you to relax because I know I couldn't. Not for a second. But eventually, even though we don't have an answer, I did begin to relax.

Best wishes to you. I'm sorry for what you are going through!

stringbean · May 27, 2009

Brenda,
I can totally relate to what you are going through. Despite all assurances that my daughter does not present a compelling case for CF, her sweat test came back borderline. I googled borderline CF, atypical CF, pancreatic insuffiency -- you name it, I googled it. I read a ton of information, but never found the answer to my question, which was: does a result over 40 ever turn out not to be CF? Her next sweat test came out borderline again. I was still assured that she doesn't have it. I was told the genetics test could tell us that she has CF, but it can't rule it out. She does have a mutation, but I'm still told she doesn't have CF.

I asked her doctor if anything other than CF can produce a borderline result and he said "malnutrition". I guess with the somewhat severe pancreatic insufficiency they discovered, that's a possibility. She's on enzymes now, but still not gaining any weight. Once she puts on a couple of pounds, I think we have to do the sweat test again.

It is so incredibly frustrating. We had the sweat test done in Jan; we got the genetics test back at the end of March and we still don't have a diagnosis. We see her gastroenterologist next week and I'm going to ask a few more questions. (The pulmonologist is supposed to make the call and she has an awful bedside manner. When I asked her a question, she gave me the name of another doctor and told me to get a second opinion.) My daughter either has CF OR she is a carrier, with malnutrition, asthma, and Johannson Blizzard Syndrome (which would explain her PI. JBS is so rare there aren't any labs in the US that test for it -- it would have to go to a lab in Europe.) It all sounds a little crazy to me...

For the first several weeks, I went insane trying to figure things out. Some days I still feel that way. But most of the time I figure that she's getting the treatment she needs, so I can wait while they dither around about what is causing her PI. I can't tell you to relax because I know I couldn't. Not for a second. But eventually, even though we don't have an answer, I did begin to relax.

Best wishes to you. I'm sorry for what you are going through!

stringbean · May 27, 2009

Brenda,
 I can totally relate to what you are going through. Despite all assurances that my daughter does not present a compelling case for CF, her sweat test came back borderline. I googled borderline CF, atypical CF, pancreatic insuffiency -- you name it, I googled it. I read a ton of information, but never found the answer to my question, which was: does a result over 40 ever turn out not to be CF? Her next sweat test came out borderline again. I was still assured that she doesn't have it. I was told the genetics test could tell us that she has CF, but it can't rule it out. She does have a mutation, but I'm still told she doesn't have CF.
 
 I asked her doctor if anything other than CF can produce a borderline result and he said "malnutrition". I guess with the somewhat severe pancreatic insufficiency they discovered, that's a possibility. She's on enzymes now, but still not gaining any weight. Once she puts on a couple of pounds, I think we have to do the sweat test again.
 
 It is so incredibly frustrating. We had the sweat test done in Jan; we got the genetics test back at the end of March and we still don't have a diagnosis. We see her gastroenterologist next week and I'm going to ask a few more questions. (The pulmonologist is supposed to make the call and she has an awful bedside manner. When I asked her a question, she gave me the name of another doctor and told me to get a second opinion.) My daughter either has CF OR she is a carrier, with malnutrition, asthma, and Johannson Blizzard Syndrome (which would explain her PI. JBS is so rare there aren't any labs in the US that test for it -- it would have to go to a lab in Europe.) It all sounds a little crazy to me...
 
 For the first several weeks, I went insane trying to figure things out. Some days I still feel that way. But most of the time I figure that she's getting the treatment she needs, so I can wait while they dither around about what is causing her PI. I can't tell you to relax because I know I couldn't. Not for a second. But eventually, even though we don't have an answer, I did begin to relax.
 
 Best wishes to you. I'm sorry for what you are going through!

dasjsmum · May 28, 2009

Hi

You migh like to try Amy's site (saveferris): <a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com">http://noexcusesnoexcuses.blogspot.com</a>

She has a lot of useful info, dont knwo if there psecific stuff you're after, but can probably answer some of your questions...she is very up on research and knows where to find a lot of different things.

dasjsmum · May 28, 2009

Hi

You migh like to try Amy's site (saveferris): <a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com">http://noexcusesnoexcuses.blogspot.com</a>

She has a lot of useful info, dont knwo if there psecific stuff you're after, but can probably answer some of your questions...she is very up on research and knows where to find a lot of different things.

dasjsmum · May 28, 2009

Hi

You migh like to try Amy's site (saveferris): <a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com">http://noexcusesnoexcuses.blogspot.com</a>

She has a lot of useful info, dont knwo if there psecific stuff you're after, but can probably answer some of your questions...she is very up on research and knows where to find a lot of different things.

dasjsmum · May 28, 2009

Hi

You migh like to try Amy's site (saveferris): <a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com">http://noexcusesnoexcuses.blogspot.com</a>

She has a lot of useful info, dont knwo if there psecific stuff you're after, but can probably answer some of your questions...she is very up on research and knows where to find a lot of different things.

dasjsmum · May 28, 2009

Hi
 
 You migh like to try Amy's site (saveferris): <a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com">http://noexcusesnoexcuses.blogspot.com</a>
 
 
 She has a lot of useful info, dont knwo if there psecific stuff you're after, but can probably answer some of your questions...she is very up on research and knows where to find a lot of different things.

dasjsmum · May 28, 2009

PS you also might like to do a search of this forum using some of the terms above. I know ther has been threads with links to sites that show the differences in genes, which ones are considered mild etc

If you do a subject search of this forum it might be better to do it through the adult section <img src="i/expressions/face-icon-small-smile.gif" border="0">

dasjsmum · May 28, 2009

PS you also might like to do a search of this forum using some of the terms above. I know ther has been threads with links to sites that show the differences in genes, which ones are considered mild etc

If you do a subject search of this forum it might be better to do it through the adult section <img src="i/expressions/face-icon-small-smile.gif" border="0">

dasjsmum · May 28, 2009

PS you also might like to do a search of this forum using some of the terms above. I know ther has been threads with links to sites that show the differences in genes, which ones are considered mild etc

If you do a subject search of this forum it might be better to do it through the adult section <img src="i/expressions/face-icon-small-smile.gif" border="0">

dasjsmum · May 28, 2009

PS you also might like to do a search of this forum using some of the terms above. I know ther has been threads with links to sites that show the differences in genes, which ones are considered mild etc

If you do a subject search of this forum it might be better to do it through the adult section <img src="i/expressions/face-icon-small-smile.gif" border="0">

dasjsmum · May 28, 2009

PS you also might like to do a search of this forum using some of the terms above. I know ther has been threads with links to sites that show the differences in genes, which ones are considered mild etc
 
 If you do a subject search of this forum it might be better to do it through the adult section <img src="i/expressions/face-icon-small-smile.gif" border="0">

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