Cf dx w/ "normal" sweat test

[Aka2007]

Cf dx w/

My sweat test was 23 and no higher. I have one DF508 and all the stuff that comes with having CF. I was tested for everything under the sun and nothing came up. The thing that made them Dx CF was all the things I was having that where so CF. It was so clear. I have been helped by all the meds for CF and thats when the doc Dx it.. it was like a grop of docs that dx it. an inturnest immune doctor and a lung doc. I was dx at 16. but have had issues with it all my life. doctors first saw it as CF when I was about 4. At 4 I was dx with malabsorpiton of fats and I was not growing well. Back then I wish I had had a G-tube. Now I am on Ultrase MT 20 enzymes and I am better. I still have allot of severe digestive issues. and always will.

19/w CF

 

[Aka2007]

Cf dx w/

My sweat test was 23 and no higher. I have one DF508 and all the stuff that comes with having CF. I was tested for everything under the sun and nothing came up. The thing that made them Dx CF was all the things I was having that where so CF. It was so clear. I have been helped by all the meds for CF and thats when the doc Dx it.. it was like a grop of docs that dx it. an inturnest immune doctor and a lung doc. I was dx at 16. but have had issues with it all my life. doctors first saw it as CF when I was about 4. At 4 I was dx with malabsorpiton of fats and I was not growing well. Back then I wish I had had a G-tube. Now I am on Ultrase MT 20 enzymes and I am better. I still have allot of severe digestive issues. and always will.

19/w CF

 

[Aka2007]

Cf dx w/

My sweat test was 23 and no higher. I have one DF508 and all the stuff that comes with having CF. I was tested for everything under the sun and nothing came up. The thing that made them Dx CF was all the things I was having that where so CF. It was so clear. I have been helped by all the meds for CF and thats when the doc Dx it.. it was like a grop of docs that dx it. an inturnest immune doctor and a lung doc. I was dx at 16. but have had issues with it all my life. doctors first saw it as CF when I was about 4. At 4 I was dx with malabsorpiton of fats and I was not growing well. Back then I wish I had had a G-tube. Now I am on Ultrase MT 20 enzymes and I am better. I still have allot of severe digestive issues. and always will.

19/w CF

 

[Aka2007]

Cf dx w/

My sweat test was 23 and no higher. I have one DF508 and all the stuff that comes with having CF. I was tested for everything under the sun and nothing came up. The thing that made them Dx CF was all the things I was having that where so CF. It was so clear. I have been helped by all the meds for CF and thats when the doc Dx it.. it was like a grop of docs that dx it. an inturnest immune doctor and a lung doc. I was dx at 16. but have had issues with it all my life. doctors first saw it as CF when I was about 4. At 4 I was dx with malabsorpiton of fats and I was not growing well. Back then I wish I had had a G-tube. Now I am on Ultrase MT 20 enzymes and I am better. I still have allot of severe digestive issues. and always will.

19/w CF

 

[Aka2007]

Cf dx w/

My sweat test was 23 and no higher. I have one DF508 and all the stuff that comes with having CF. I was tested for everything under the sun and nothing came up. The thing that made them Dx CF was all the things I was having that where so CF. It was so clear. I have been helped by all the meds for CF and thats when the doc Dx it.. it was like a grop of docs that dx it. an inturnest immune doctor and a lung doc. I was dx at 16. but have had issues with it all my life. doctors first saw it as CF when I was about 4. At 4 I was dx with malabsorpiton of fats and I was not growing well. Back then I wish I had had a G-tube. Now I am on Ultrase MT 20 enzymes and I am better. I still have allot of severe digestive issues. and always will.

19/w CF

 

[mom2lillian]

Cf dx w/

1993: sweat tests 50, 50, 39, 34 no mutations

2001: 50, 56 1 mutation found

2003/4: 2nd mutation found

don't give up or take no for an answer if you believe in your heart somethign is wrong. Most of my problems are believed to be from the problems caused/complicated from not being diagnosed in a timely fashion

Nicole--diagnosed @21, finally

 

[mom2lillian]

Cf dx w/

1993: sweat tests 50, 50, 39, 34 no mutations

2001: 50, 56 1 mutation found

2003/4: 2nd mutation found

don't give up or take no for an answer if you believe in your heart somethign is wrong. Most of my problems are believed to be from the problems caused/complicated from not being diagnosed in a timely fashion

Nicole--diagnosed @21, finally

 

[mom2lillian]

Cf dx w/

1993: sweat tests 50, 50, 39, 34 no mutations

2001: 50, 56 1 mutation found

2003/4: 2nd mutation found

don't give up or take no for an answer if you believe in your heart somethign is wrong. Most of my problems are believed to be from the problems caused/complicated from not being diagnosed in a timely fashion

Nicole--diagnosed @21, finally

 

[mom2lillian]

Cf dx w/

1993: sweat tests 50, 50, 39, 34 no mutations

2001: 50, 56 1 mutation found

2003/4: 2nd mutation found

don't give up or take no for an answer if you believe in your heart somethign is wrong. Most of my problems are believed to be from the problems caused/complicated from not being diagnosed in a timely fashion

Nicole--diagnosed @21, finally

 

[mom2lillian]

Cf dx w/

1993: sweat tests 50, 50, 39, 34 no mutations

2001: 50, 56 1 mutation found

2003/4: 2nd mutation found

don't give up or take no for an answer if you believe in your heart somethign is wrong. Most of my problems are believed to be from the problems caused/complicated from not being diagnosed in a timely fashion

Nicole--diagnosed @21, finally

 

[zoe4life]

Cf dx w/ "normal

My boys: 16 yr.old sweat test 53
11 yr.old sweat test 51
Both have the DF508 & R117h genes. They were tested for genes because their 1/2 sister has cf. I did the unimagineable and married 2 men in my lifetime that both are carriers. Then the doc ordered the sweat test, when it came back borderline, she did all the "normal" cf testing, pft's, x-rays, stool samples, etc... Both boys passed all those tests with flying colors. So, after many long discussions, the doctors and us decided to not put a diagnosis of cf on them yet. My oldest son has plans to join the Coast Guard next year and our cf doctor knew that diagnosis would ruin his goals for the Coast Guard.

Zoe's sweat numbers were 118. Her genes are below.

 

[zoe4life]

Cf dx w/ "normal

My boys: 16 yr.old sweat test 53
11 yr.old sweat test 51
Both have the DF508 & R117h genes. They were tested for genes because their 1/2 sister has cf. I did the unimagineable and married 2 men in my lifetime that both are carriers. Then the doc ordered the sweat test, when it came back borderline, she did all the "normal" cf testing, pft's, x-rays, stool samples, etc... Both boys passed all those tests with flying colors. So, after many long discussions, the doctors and us decided to not put a diagnosis of cf on them yet. My oldest son has plans to join the Coast Guard next year and our cf doctor knew that diagnosis would ruin his goals for the Coast Guard.

Zoe's sweat numbers were 118. Her genes are below.

 

[zoe4life]

Cf dx w/ "normal

My boys: 16 yr.old sweat test 53
11 yr.old sweat test 51
Both have the DF508 & R117h genes. They were tested for genes because their 1/2 sister has cf. I did the unimagineable and married 2 men in my lifetime that both are carriers. Then the doc ordered the sweat test, when it came back borderline, she did all the "normal" cf testing, pft's, x-rays, stool samples, etc... Both boys passed all those tests with flying colors. So, after many long discussions, the doctors and us decided to not put a diagnosis of cf on them yet. My oldest son has plans to join the Coast Guard next year and our cf doctor knew that diagnosis would ruin his goals for the Coast Guard.

Zoe's sweat numbers were 118. Her genes are below.

 

[zoe4life]

Cf dx w/ "normal

My boys: 16 yr.old sweat test 53
11 yr.old sweat test 51
Both have the DF508 & R117h genes. They were tested for genes because their 1/2 sister has cf. I did the unimagineable and married 2 men in my lifetime that both are carriers. Then the doc ordered the sweat test, when it came back borderline, she did all the "normal" cf testing, pft's, x-rays, stool samples, etc... Both boys passed all those tests with flying colors. So, after many long discussions, the doctors and us decided to not put a diagnosis of cf on them yet. My oldest son has plans to join the Coast Guard next year and our cf doctor knew that diagnosis would ruin his goals for the Coast Guard.

Zoe's sweat numbers were 118. Her genes are below.

 

[zoe4life]

Cf dx w/ "normal

My boys: 16 yr.old sweat test 53
11 yr.old sweat test 51
Both have the DF508 & R117h genes. They were tested for genes because their 1/2 sister has cf. I did the unimagineable and married 2 men in my lifetime that both are carriers. Then the doc ordered the sweat test, when it came back borderline, she did all the "normal" cf testing, pft's, x-rays, stool samples, etc... Both boys passed all those tests with flying colors. So, after many long discussions, the doctors and us decided to not put a diagnosis of cf on them yet. My oldest son has plans to join the Coast Guard next year and our cf doctor knew that diagnosis would ruin his goals for the Coast Guard.

Zoe's sweat numbers were 118. Her genes are below.

 

[Alyssa]

Cf dx w/ "normal

Jada,

My kids have the same genes as your boys - we also held off on an official CF diagnosis for a while - when there are little to no symptoms it seems the best course of action. The good news is you now know what to look out for down the road should their condition/symptoms change - it has only been recently at age 21 that my son developed a productive cough - had we not known that he had the two genes, he would have gone undiagnosed and probably not gotten the best treatment for many years -- it's better to know what you are treating!

 

[Alyssa]

Cf dx w/ "normal

Jada,

My kids have the same genes as your boys - we also held off on an official CF diagnosis for a while - when there are little to no symptoms it seems the best course of action. The good news is you now know what to look out for down the road should their condition/symptoms change - it has only been recently at age 21 that my son developed a productive cough - had we not known that he had the two genes, he would have gone undiagnosed and probably not gotten the best treatment for many years -- it's better to know what you are treating!

 

[Alyssa]

Cf dx w/ "normal

Jada,

My kids have the same genes as your boys - we also held off on an official CF diagnosis for a while - when there are little to no symptoms it seems the best course of action. The good news is you now know what to look out for down the road should their condition/symptoms change - it has only been recently at age 21 that my son developed a productive cough - had we not known that he had the two genes, he would have gone undiagnosed and probably not gotten the best treatment for many years -- it's better to know what you are treating!

 

[Alyssa]

Cf dx w/ "normal

Jada,

My kids have the same genes as your boys - we also held off on an official CF diagnosis for a while - when there are little to no symptoms it seems the best course of action. The good news is you now know what to look out for down the road should their condition/symptoms change - it has only been recently at age 21 that my son developed a productive cough - had we not known that he had the two genes, he would have gone undiagnosed and probably not gotten the best treatment for many years -- it's better to know what you are treating!

 

[Alyssa]

Cf dx w/ "normal

Jada,

My kids have the same genes as your boys - we also held off on an official CF diagnosis for a while - when there are little to no symptoms it seems the best course of action. The good news is you now know what to look out for down the road should their condition/symptoms change - it has only been recently at age 21 that my son developed a productive cough - had we not known that he had the two genes, he would have gone undiagnosed and probably not gotten the best treatment for many years -- it's better to know what you are treating!