ok need urgent help

J

JazzysMom

New member
NEVER EVER accept anyone's word on a dx with CF unless conclusive testing was done espcecially if they dont specialize in CF!!!!

Between unknown variables, different mutations, bi-racial children being born etc there is a lot of differntials that throws the "standards" out the window. The ONLY way to 100% know is Genetic Testing. A sweat test is a start, but dont let them give you a "low, borerline, high" response from that. Get the actual number from the results.

This really irritates me & I hope you can find it in you to stand your ground & be your child's advocate!
 
J

JazzysMom

New member
NEVER EVER accept anyone's word on a dx with CF unless conclusive testing was done espcecially if they dont specialize in CF!!!!

Between unknown variables, different mutations, bi-racial children being born etc there is a lot of differntials that throws the "standards" out the window. The ONLY way to 100% know is Genetic Testing. A sweat test is a start, but dont let them give you a "low, borerline, high" response from that. Get the actual number from the results.

This really irritates me & I hope you can find it in you to stand your ground & be your child's advocate!
 
J

JazzysMom

New member
NEVER EVER accept anyone's word on a dx with CF unless conclusive testing was done espcecially if they dont specialize in CF!!!!

Between unknown variables, different mutations, bi-racial children being born etc there is a lot of differntials that throws the "standards" out the window. The ONLY way to 100% know is Genetic Testing. A sweat test is a start, but dont let them give you a "low, borerline, high" response from that. Get the actual number from the results.

This really irritates me & I hope you can find it in you to stand your ground & be your child's advocate!
 
J

JazzysMom

New member
NEVER EVER accept anyone's word on a dx with CF unless conclusive testing was done espcecially if they dont specialize in CF!!!!

Between unknown variables, different mutations, bi-racial children being born etc there is a lot of differntials that throws the "standards" out the window. The ONLY way to 100% know is Genetic Testing. A sweat test is a start, but dont let them give you a "low, borerline, high" response from that. Get the actual number from the results.

This really irritates me & I hope you can find it in you to stand your ground & be your child's advocate!
 
J

JazzysMom

New member
NEVER EVER accept anyone's word on a dx with CF unless conclusive testing was done espcecially if they dont specialize in CF!!!!
<br />
<br />Between unknown variables, different mutations, bi-racial children being born etc there is a lot of differntials that throws the "standards" out the window. The ONLY way to 100% know is Genetic Testing. A sweat test is a start, but dont let them give you a "low, borerline, high" response from that. Get the actual number from the results.
<br />
<br />This really irritates me & I hope you can find it in you to stand your ground & be your child's advocate!
 
M

mrsp86

New member
hi haydn does not have celeacs or ibs nor does he have alergiesall have been tested and come back normal the sweat test is the only one not done. oh i will stand my ground dont you worry about that. the consultant that saw haydn was the one that took him on in the ward when he was in saying haydn would be better off in his care .i never had the test for cf when i was pregnant but it does not run in my family and my ex is adiment it dont run in his any ideas as u have all said he has the symptoms
 
M

mrsp86

New member
hi haydn does not have celeacs or ibs nor does he have alergiesall have been tested and come back normal the sweat test is the only one not done. oh i will stand my ground dont you worry about that. the consultant that saw haydn was the one that took him on in the ward when he was in saying haydn would be better off in his care .i never had the test for cf when i was pregnant but it does not run in my family and my ex is adiment it dont run in his any ideas as u have all said he has the symptoms
 
M

mrsp86

New member
hi haydn does not have celeacs or ibs nor does he have alergiesall have been tested and come back normal the sweat test is the only one not done. oh i will stand my ground dont you worry about that. the consultant that saw haydn was the one that took him on in the ward when he was in saying haydn would be better off in his care .i never had the test for cf when i was pregnant but it does not run in my family and my ex is adiment it dont run in his any ideas as u have all said he has the symptoms
 
M

mrsp86

New member
hi haydn does not have celeacs or ibs nor does he have alergiesall have been tested and come back normal the sweat test is the only one not done. oh i will stand my ground dont you worry about that. the consultant that saw haydn was the one that took him on in the ward when he was in saying haydn would be better off in his care .i never had the test for cf when i was pregnant but it does not run in my family and my ex is adiment it dont run in his any ideas as u have all said he has the symptoms
 
M

mrsp86

New member
hi haydn does not have celeacs or ibs nor does he have alergiesall have been tested and come back normal the sweat test is the only one not done. oh i will stand my ground dont you worry about that. the consultant that saw haydn was the one that took him on in the ward when he was in saying haydn would be better off in his care .i never had the test for cf when i was pregnant but it does not run in my family and my ex is adiment it dont run in his any ideas as u have all said he has the symptoms
 
J

JazzysMom

New member
History of CF doesnt mean anything. A majority of CF diagnosis comes from those without any known family history!

You are better off ruling out CF completely or confirming it so your child can get the proper care if it is CF.

One sad thing about the medical community is that CF is an orphan disease meaning its not very common & we lack the knowledge & education in the general medical community that Cancer, MS etc has.

That is why sites like this are so important. We try to avoid issues for new comers by offering our experiences.

Glad to hear you will stand your ground! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JazzysMom

New member
History of CF doesnt mean anything. A majority of CF diagnosis comes from those without any known family history!

You are better off ruling out CF completely or confirming it so your child can get the proper care if it is CF.

One sad thing about the medical community is that CF is an orphan disease meaning its not very common & we lack the knowledge & education in the general medical community that Cancer, MS etc has.

That is why sites like this are so important. We try to avoid issues for new comers by offering our experiences.

Glad to hear you will stand your ground! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JazzysMom

New member
History of CF doesnt mean anything. A majority of CF diagnosis comes from those without any known family history!

You are better off ruling out CF completely or confirming it so your child can get the proper care if it is CF.

One sad thing about the medical community is that CF is an orphan disease meaning its not very common & we lack the knowledge & education in the general medical community that Cancer, MS etc has.

That is why sites like this are so important. We try to avoid issues for new comers by offering our experiences.

Glad to hear you will stand your ground! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JazzysMom

New member
History of CF doesnt mean anything. A majority of CF diagnosis comes from those without any known family history!

You are better off ruling out CF completely or confirming it so your child can get the proper care if it is CF.

One sad thing about the medical community is that CF is an orphan disease meaning its not very common & we lack the knowledge & education in the general medical community that Cancer, MS etc has.

That is why sites like this are so important. We try to avoid issues for new comers by offering our experiences.

Glad to hear you will stand your ground! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JazzysMom

New member
History of CF doesnt mean anything. A majority of CF diagnosis comes from those without any known family history!
<br />
<br />You are better off ruling out CF completely or confirming it so your child can get the proper care if it is CF.
<br />
<br />One sad thing about the medical community is that CF is an orphan disease meaning its not very common & we lack the knowledge & education in the general medical community that Cancer, MS etc has.
<br />
<br />That is why sites like this are so important. We try to avoid issues for new comers by offering our experiences.
<br />
<br />Glad to hear you will stand your ground! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JORDYSMOM

New member
I agree with Mel (JazzysMom). Many people here had no family history. My family didn't even know what CF was when my son was diagnosed. Once I found this site, and started educating myself, I realized that there were previously unexplained illnesses in my family that were more than likely CF.

Keep pushing for the answers. You are on the right track. Let us know how the sweat test goes.

Stacey
 
J

JORDYSMOM

New member
I agree with Mel (JazzysMom). Many people here had no family history. My family didn't even know what CF was when my son was diagnosed. Once I found this site, and started educating myself, I realized that there were previously unexplained illnesses in my family that were more than likely CF.

Keep pushing for the answers. You are on the right track. Let us know how the sweat test goes.

Stacey
 
J

JORDYSMOM

New member
I agree with Mel (JazzysMom). Many people here had no family history. My family didn't even know what CF was when my son was diagnosed. Once I found this site, and started educating myself, I realized that there were previously unexplained illnesses in my family that were more than likely CF.

Keep pushing for the answers. You are on the right track. Let us know how the sweat test goes.

Stacey
 
J

JORDYSMOM

New member
I agree with Mel (JazzysMom). Many people here had no family history. My family didn't even know what CF was when my son was diagnosed. Once I found this site, and started educating myself, I realized that there were previously unexplained illnesses in my family that were more than likely CF.

Keep pushing for the answers. You are on the right track. Let us know how the sweat test goes.

Stacey
 
J

JORDYSMOM

New member
I agree with Mel (JazzysMom). Many people here had no family history. My family didn't even know what CF was when my son was diagnosed. Once I found this site, and started educating myself, I realized that there were previously unexplained illnesses in my family that were more than likely CF.
<br />
<br />Keep pushing for the answers. You are on the right track. Let us know how the sweat test goes.
<br />
<br />Stacey
 
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