?? about GI probs as symptom

JORDYSMOM · Jan 31, 2008

?? about GI probs as symptoms

I don't want to rain on your parade, but testing for only 23 mutations when there are over 1500 is just not adequate. Of course that is MY opinion, but I think most people here will say the same thing. 23 is just a drop in the bucket. Surely this doctor is not from a certified clinic????

Another thing I wanted to point out to you, is that the sweat test number can be negative, and your child can still have CF. Just today, in the adult forum, 3gr8kids posted her daughter's results. Her daughter has CF, which was confirmed by genetic testing, and her sweat test result was 16! There are many other members here who have VERY low sweat test numbers, but when the full panel genetic test was run, they found their two mutations.

I really, really hope your child doesn't have CF, but I don't think you can rule it out with a 23 mutation test and a negative/borderline sweat test result. I sincerely hope you find the answers you need to help your child.

Stacey

JORDYSMOM · Jan 31, 2008

?? about GI probs as symptoms

I don't want to rain on your parade, but testing for only 23 mutations when there are over 1500 is just not adequate. Of course that is MY opinion, but I think most people here will say the same thing. 23 is just a drop in the bucket. Surely this doctor is not from a certified clinic????

Another thing I wanted to point out to you, is that the sweat test number can be negative, and your child can still have CF. Just today, in the adult forum, 3gr8kids posted her daughter's results. Her daughter has CF, which was confirmed by genetic testing, and her sweat test result was 16! There are many other members here who have VERY low sweat test numbers, but when the full panel genetic test was run, they found their two mutations.

I really, really hope your child doesn't have CF, but I don't think you can rule it out with a 23 mutation test and a negative/borderline sweat test result. I sincerely hope you find the answers you need to help your child.

Stacey

JORDYSMOM · Jan 31, 2008

?? about GI probs as symptoms

I don't want to rain on your parade, but testing for only 23 mutations when there are over 1500 is just not adequate. Of course that is MY opinion, but I think most people here will say the same thing. 23 is just a drop in the bucket. Surely this doctor is not from a certified clinic????

Another thing I wanted to point out to you, is that the sweat test number can be negative, and your child can still have CF. Just today, in the adult forum, 3gr8kids posted her daughter's results. Her daughter has CF, which was confirmed by genetic testing, and her sweat test result was 16! There are many other members here who have VERY low sweat test numbers, but when the full panel genetic test was run, they found their two mutations.

I really, really hope your child doesn't have CF, but I don't think you can rule it out with a 23 mutation test and a negative/borderline sweat test result. I sincerely hope you find the answers you need to help your child.

Stacey

JORDYSMOM · Jan 31, 2008

?? about GI probs as symptoms

I don't want to rain on your parade, but testing for only 23 mutations when there are over 1500 is just not adequate. Of course that is MY opinion, but I think most people here will say the same thing. 23 is just a drop in the bucket. Surely this doctor is not from a certified clinic????

Another thing I wanted to point out to you, is that the sweat test number can be negative, and your child can still have CF. Just today, in the adult forum, 3gr8kids posted her daughter's results. Her daughter has CF, which was confirmed by genetic testing, and her sweat test result was 16! There are many other members here who have VERY low sweat test numbers, but when the full panel genetic test was run, they found their two mutations.

I really, really hope your child doesn't have CF, but I don't think you can rule it out with a 23 mutation test and a negative/borderline sweat test result. I sincerely hope you find the answers you need to help your child.

Stacey

JORDYSMOM · Jan 31, 2008

?? about GI probs as symptoms

I don't want to rain on your parade, but testing for only 23 mutations when there are over 1500 is just not adequate. Of course that is MY opinion, but I think most people here will say the same thing. 23 is just a drop in the bucket. Surely this doctor is not from a certified clinic????

Another thing I wanted to point out to you, is that the sweat test number can be negative, and your child can still have CF. Just today, in the adult forum, 3gr8kids posted her daughter's results. Her daughter has CF, which was confirmed by genetic testing, and her sweat test result was 16! There are many other members here who have VERY low sweat test numbers, but when the full panel genetic test was run, they found their two mutations.

I really, really hope your child doesn't have CF, but I don't think you can rule it out with a 23 mutation test and a negative/borderline sweat test result. I sincerely hope you find the answers you need to help your child.

Stacey

BrsMiney · Jan 31, 2008

?? about GI probs as symptoms

HMMM. I guess my post (which was hastily written) wasn't clear. Sorry.

First, I never said I was having a parade, so don't worry--you didn't rain on it...we are having anything BUT a celebration around here this week. As I said this has been one of the worst weeks of my life.

And no, neither we NOR the doctor think that testing for just 23 mutations is adequate (hence the sweat test tomorrow), but that was the test that was originally ordered, so we have to take the results as we get them. Although the doc did convey that he feels that getting the negative on those 23 helps make our odds a little better that DS is negative, especially considering he has "borderline symptoms".

>>Surely this doctor is not from a certified clinic????<<

No, he's not. I never said the doctor was from a certified clinic, he's a surgeon... someone further up in the post asked if the sweat test was being performed in a certified CFF clinic, as yes it is. The clinic/lab and the hospital's pulomonary dept are a certified clinic--the doctor is a pediatric surgeon in indepent practice, who is the ordering doctor for these tests because he is the doctor treating the original problem (rectal prolapse).

What will be done if we get a low number (such as the 16 mentioned by pp) I can't say. If DS had serious problems or respiratory issues, I know I would push for more testing. But with his atypical presentation, a negative "screen" and perhaps a low-negative sweat test...I may choose to accept he is negative, but be vigilant to watch for new symptoms to appear (or maybe not). I have already begun a dialogue with our CFF coordinator for this area, so maybe I will get her opinion as well. I truly can't say what I will do until that time comes.

All I know is what I said in the above post...if I get a high negative I will pursue further testing.

I hope this additional information makes things more clear.

BrsMiney · Jan 31, 2008

?? about GI probs as symptoms

HMMM. I guess my post (which was hastily written) wasn't clear. Sorry.

First, I never said I was having a parade, so don't worry--you didn't rain on it...we are having anything BUT a celebration around here this week. As I said this has been one of the worst weeks of my life.

And no, neither we NOR the doctor think that testing for just 23 mutations is adequate (hence the sweat test tomorrow), but that was the test that was originally ordered, so we have to take the results as we get them. Although the doc did convey that he feels that getting the negative on those 23 helps make our odds a little better that DS is negative, especially considering he has "borderline symptoms".

>>Surely this doctor is not from a certified clinic????<<

No, he's not. I never said the doctor was from a certified clinic, he's a surgeon... someone further up in the post asked if the sweat test was being performed in a certified CFF clinic, as yes it is. The clinic/lab and the hospital's pulomonary dept are a certified clinic--the doctor is a pediatric surgeon in indepent practice, who is the ordering doctor for these tests because he is the doctor treating the original problem (rectal prolapse).

What will be done if we get a low number (such as the 16 mentioned by pp) I can't say. If DS had serious problems or respiratory issues, I know I would push for more testing. But with his atypical presentation, a negative "screen" and perhaps a low-negative sweat test...I may choose to accept he is negative, but be vigilant to watch for new symptoms to appear (or maybe not). I have already begun a dialogue with our CFF coordinator for this area, so maybe I will get her opinion as well. I truly can't say what I will do until that time comes.

All I know is what I said in the above post...if I get a high negative I will pursue further testing.

I hope this additional information makes things more clear.

BrsMiney · Jan 31, 2008

?? about GI probs as symptoms

HMMM. I guess my post (which was hastily written) wasn't clear. Sorry.

First, I never said I was having a parade, so don't worry--you didn't rain on it...we are having anything BUT a celebration around here this week. As I said this has been one of the worst weeks of my life.

And no, neither we NOR the doctor think that testing for just 23 mutations is adequate (hence the sweat test tomorrow), but that was the test that was originally ordered, so we have to take the results as we get them. Although the doc did convey that he feels that getting the negative on those 23 helps make our odds a little better that DS is negative, especially considering he has "borderline symptoms".

>>Surely this doctor is not from a certified clinic????<<

No, he's not. I never said the doctor was from a certified clinic, he's a surgeon... someone further up in the post asked if the sweat test was being performed in a certified CFF clinic, as yes it is. The clinic/lab and the hospital's pulomonary dept are a certified clinic--the doctor is a pediatric surgeon in indepent practice, who is the ordering doctor for these tests because he is the doctor treating the original problem (rectal prolapse).

What will be done if we get a low number (such as the 16 mentioned by pp) I can't say. If DS had serious problems or respiratory issues, I know I would push for more testing. But with his atypical presentation, a negative "screen" and perhaps a low-negative sweat test...I may choose to accept he is negative, but be vigilant to watch for new symptoms to appear (or maybe not). I have already begun a dialogue with our CFF coordinator for this area, so maybe I will get her opinion as well. I truly can't say what I will do until that time comes.

All I know is what I said in the above post...if I get a high negative I will pursue further testing.

I hope this additional information makes things more clear.

BrsMiney · Jan 31, 2008

?? about GI probs as symptoms

HMMM. I guess my post (which was hastily written) wasn't clear. Sorry.

First, I never said I was having a parade, so don't worry--you didn't rain on it...we are having anything BUT a celebration around here this week. As I said this has been one of the worst weeks of my life.

And no, neither we NOR the doctor think that testing for just 23 mutations is adequate (hence the sweat test tomorrow), but that was the test that was originally ordered, so we have to take the results as we get them. Although the doc did convey that he feels that getting the negative on those 23 helps make our odds a little better that DS is negative, especially considering he has "borderline symptoms".

>>Surely this doctor is not from a certified clinic????<<

No, he's not. I never said the doctor was from a certified clinic, he's a surgeon... someone further up in the post asked if the sweat test was being performed in a certified CFF clinic, as yes it is. The clinic/lab and the hospital's pulomonary dept are a certified clinic--the doctor is a pediatric surgeon in indepent practice, who is the ordering doctor for these tests because he is the doctor treating the original problem (rectal prolapse).

What will be done if we get a low number (such as the 16 mentioned by pp) I can't say. If DS had serious problems or respiratory issues, I know I would push for more testing. But with his atypical presentation, a negative "screen" and perhaps a low-negative sweat test...I may choose to accept he is negative, but be vigilant to watch for new symptoms to appear (or maybe not). I have already begun a dialogue with our CFF coordinator for this area, so maybe I will get her opinion as well. I truly can't say what I will do until that time comes.

All I know is what I said in the above post...if I get a high negative I will pursue further testing.

I hope this additional information makes things more clear.

BrsMiney · Jan 31, 2008

?? about GI probs as symptoms

HMMM. I guess my post (which was hastily written) wasn't clear. Sorry.

First, I never said I was having a parade, so don't worry--you didn't rain on it...we are having anything BUT a celebration around here this week. As I said this has been one of the worst weeks of my life.

And no, neither we NOR the doctor think that testing for just 23 mutations is adequate (hence the sweat test tomorrow), but that was the test that was originally ordered, so we have to take the results as we get them. Although the doc did convey that he feels that getting the negative on those 23 helps make our odds a little better that DS is negative, especially considering he has "borderline symptoms".

>>Surely this doctor is not from a certified clinic????<<

No, he's not. I never said the doctor was from a certified clinic, he's a surgeon... someone further up in the post asked if the sweat test was being performed in a certified CFF clinic, as yes it is. The clinic/lab and the hospital's pulomonary dept are a certified clinic--the doctor is a pediatric surgeon in indepent practice, who is the ordering doctor for these tests because he is the doctor treating the original problem (rectal prolapse).

What will be done if we get a low number (such as the 16 mentioned by pp) I can't say. If DS had serious problems or respiratory issues, I know I would push for more testing. But with his atypical presentation, a negative "screen" and perhaps a low-negative sweat test...I may choose to accept he is negative, but be vigilant to watch for new symptoms to appear (or maybe not). I have already begun a dialogue with our CFF coordinator for this area, so maybe I will get her opinion as well. I truly can't say what I will do until that time comes.

All I know is what I said in the above post...if I get a high negative I will pursue further testing.

I hope this additional information makes things more clear.

Ratatosk · Jan 31, 2008

?? about GI probs as symptoms

I hope despite the sweat test results they'll proceed with additional genetic testing. There are several individuals on this site who've gotten very low numbers, passed the initial CF screening, yet pushed for additional testing and found they had CF.

DS' result was 32 and his immediate symptoms were digestive. As far as respiratory issues, he had a couple sinus infections his first year, only coughed when he got bronchitis at 3 months and a year or so ago; however, throat cultures have indicated common CF bugs -- he cultured Pseudomonas at 3 months, H. Influenza and more recently Steno. Malt. Looking at him, listening to him, you'd never ever know that he has CF.

Ratatosk · Jan 31, 2008

?? about GI probs as symptoms

I hope despite the sweat test results they'll proceed with additional genetic testing. There are several individuals on this site who've gotten very low numbers, passed the initial CF screening, yet pushed for additional testing and found they had CF.

DS' result was 32 and his immediate symptoms were digestive. As far as respiratory issues, he had a couple sinus infections his first year, only coughed when he got bronchitis at 3 months and a year or so ago; however, throat cultures have indicated common CF bugs -- he cultured Pseudomonas at 3 months, H. Influenza and more recently Steno. Malt. Looking at him, listening to him, you'd never ever know that he has CF.

Ratatosk · Jan 31, 2008

?? about GI probs as symptoms

I hope despite the sweat test results they'll proceed with additional genetic testing. There are several individuals on this site who've gotten very low numbers, passed the initial CF screening, yet pushed for additional testing and found they had CF.

DS' result was 32 and his immediate symptoms were digestive. As far as respiratory issues, he had a couple sinus infections his first year, only coughed when he got bronchitis at 3 months and a year or so ago; however, throat cultures have indicated common CF bugs -- he cultured Pseudomonas at 3 months, H. Influenza and more recently Steno. Malt. Looking at him, listening to him, you'd never ever know that he has CF.

Ratatosk · Jan 31, 2008

?? about GI probs as symptoms

I hope despite the sweat test results they'll proceed with additional genetic testing. There are several individuals on this site who've gotten very low numbers, passed the initial CF screening, yet pushed for additional testing and found they had CF.

DS' result was 32 and his immediate symptoms were digestive. As far as respiratory issues, he had a couple sinus infections his first year, only coughed when he got bronchitis at 3 months and a year or so ago; however, throat cultures have indicated common CF bugs -- he cultured Pseudomonas at 3 months, H. Influenza and more recently Steno. Malt. Looking at him, listening to him, you'd never ever know that he has CF.

Ratatosk · Jan 31, 2008

?? about GI probs as symptoms

I hope despite the sweat test results they'll proceed with additional genetic testing. There are several individuals on this site who've gotten very low numbers, passed the initial CF screening, yet pushed for additional testing and found they had CF.

DS' result was 32 and his immediate symptoms were digestive. As far as respiratory issues, he had a couple sinus infections his first year, only coughed when he got bronchitis at 3 months and a year or so ago; however, throat cultures have indicated common CF bugs -- he cultured Pseudomonas at 3 months, H. Influenza and more recently Steno. Malt. Looking at him, listening to him, you'd never ever know that he has CF.

BrsMiney · Jan 31, 2008

Ratatosk--Thanks. Your 32 is the kind of number that would alarm me from what I have read and heard. If we get a 32 I will request additional testing! It is the LOW numbers that I'm still unsure about... if we get an 18, or an 8 even. As I said I'll just have to get some opinions and make a decision after we have our test results tomorrow.

DS is almost 3 and has had one cold (last fall) and I know who he caught it from. It really left his chest alone and concentrated on his upper respiratory area (KWIM?) and throat. They did a throat culture and it was "negative" (I'm assuming for anything, not JUST strep, since once you start growing stuff in a petri dish you would grow whatever bacteria is in the sample).

He has had the digestive issues (better now but not completely gone), is a little underweight, and now the rectal proplapses. I have talked to this surgeon (who admits this is outside his specialty but is trying to be our advocate), the coordinator at the CFF clinic, and our pedi GI's office--all of whom have said he has "borderline" symptoms. That this is not a "red flag"case, but that it can't be ruled out in this case either.

So, right now we are just waiting to go to our test tomorrow...

"One Day at a Time"--that's an old gospel, and it how I am taking this.

BrsMiney · Jan 31, 2008

Ratatosk--Thanks. Your 32 is the kind of number that would alarm me from what I have read and heard. If we get a 32 I will request additional testing! It is the LOW numbers that I'm still unsure about... if we get an 18, or an 8 even. As I said I'll just have to get some opinions and make a decision after we have our test results tomorrow.

DS is almost 3 and has had one cold (last fall) and I know who he caught it from. It really left his chest alone and concentrated on his upper respiratory area (KWIM?) and throat. They did a throat culture and it was "negative" (I'm assuming for anything, not JUST strep, since once you start growing stuff in a petri dish you would grow whatever bacteria is in the sample).

He has had the digestive issues (better now but not completely gone), is a little underweight, and now the rectal proplapses. I have talked to this surgeon (who admits this is outside his specialty but is trying to be our advocate), the coordinator at the CFF clinic, and our pedi GI's office--all of whom have said he has "borderline" symptoms. That this is not a "red flag"case, but that it can't be ruled out in this case either.

So, right now we are just waiting to go to our test tomorrow...

"One Day at a Time"--that's an old gospel, and it how I am taking this.

BrsMiney · Jan 31, 2008

Ratatosk--Thanks. Your 32 is the kind of number that would alarm me from what I have read and heard. If we get a 32 I will request additional testing! It is the LOW numbers that I'm still unsure about... if we get an 18, or an 8 even. As I said I'll just have to get some opinions and make a decision after we have our test results tomorrow.

DS is almost 3 and has had one cold (last fall) and I know who he caught it from. It really left his chest alone and concentrated on his upper respiratory area (KWIM?) and throat. They did a throat culture and it was "negative" (I'm assuming for anything, not JUST strep, since once you start growing stuff in a petri dish you would grow whatever bacteria is in the sample).

He has had the digestive issues (better now but not completely gone), is a little underweight, and now the rectal proplapses. I have talked to this surgeon (who admits this is outside his specialty but is trying to be our advocate), the coordinator at the CFF clinic, and our pedi GI's office--all of whom have said he has "borderline" symptoms. That this is not a "red flag"case, but that it can't be ruled out in this case either.

So, right now we are just waiting to go to our test tomorrow...

"One Day at a Time"--that's an old gospel, and it how I am taking this.

BrsMiney · Jan 31, 2008

Ratatosk--Thanks. Your 32 is the kind of number that would alarm me from what I have read and heard. If we get a 32 I will request additional testing! It is the LOW numbers that I'm still unsure about... if we get an 18, or an 8 even. As I said I'll just have to get some opinions and make a decision after we have our test results tomorrow.

DS is almost 3 and has had one cold (last fall) and I know who he caught it from. It really left his chest alone and concentrated on his upper respiratory area (KWIM?) and throat. They did a throat culture and it was "negative" (I'm assuming for anything, not JUST strep, since once you start growing stuff in a petri dish you would grow whatever bacteria is in the sample).

He has had the digestive issues (better now but not completely gone), is a little underweight, and now the rectal proplapses. I have talked to this surgeon (who admits this is outside his specialty but is trying to be our advocate), the coordinator at the CFF clinic, and our pedi GI's office--all of whom have said he has "borderline" symptoms. That this is not a "red flag"case, but that it can't be ruled out in this case either.

So, right now we are just waiting to go to our test tomorrow...

"One Day at a Time"--that's an old gospel, and it how I am taking this.

BrsMiney · Jan 31, 2008

Ratatosk--Thanks. Your 32 is the kind of number that would alarm me from what I have read and heard. If we get a 32 I will request additional testing! It is the LOW numbers that I'm still unsure about... if we get an 18, or an 8 even. As I said I'll just have to get some opinions and make a decision after we have our test results tomorrow.

DS is almost 3 and has had one cold (last fall) and I know who he caught it from. It really left his chest alone and concentrated on his upper respiratory area (KWIM?) and throat. They did a throat culture and it was "negative" (I'm assuming for anything, not JUST strep, since once you start growing stuff in a petri dish you would grow whatever bacteria is in the sample).

He has had the digestive issues (better now but not completely gone), is a little underweight, and now the rectal proplapses. I have talked to this surgeon (who admits this is outside his specialty but is trying to be our advocate), the coordinator at the CFF clinic, and our pedi GI's office--all of whom have said he has "borderline" symptoms. That this is not a "red flag"case, but that it can't be ruled out in this case either.

So, right now we are just waiting to go to our test tomorrow...

"One Day at a Time"--that's an old gospel, and it how I am taking this.

?? about GI probs as symptom

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