i am confused

[ktsmom]

I know how scared you are. I want to help answer your questions but I can't tell by your post if they are doing futher genetic testing on your son to see if both of his CFTR genes are mutated. I agree that 64 is basically considered a positive sweat test result.

Curious as to why they put him on baby food already?

My daughter (who carries two copies of the delfa f508 mutation) hung on pretty good until about age 2, but then she really began to fall off her growth curve. She still does not have any lung issues to speak of.

As scary as all of this may seem it will be best once you get some answers - then there are so many things you can do to keep him healthy. Let us know!

 

[ktsmom]

I know how scared you are. I want to help answer your questions but I can't tell by your post if they are doing futher genetic testing on your son to see if both of his CFTR genes are mutated. I agree that 64 is basically considered a positive sweat test result.

Curious as to why they put him on baby food already?

My daughter (who carries two copies of the delfa f508 mutation) hung on pretty good until about age 2, but then she really began to fall off her growth curve. She still does not have any lung issues to speak of.

As scary as all of this may seem it will be best once you get some answers - then there are so many things you can do to keep him healthy. Let us know!

 

[ktsmom]

I know how scared you are. I want to help answer your questions but I can't tell by your post if they are doing futher genetic testing on your son to see if both of his CFTR genes are mutated. I agree that 64 is basically considered a positive sweat test result.

Curious as to why they put him on baby food already?

My daughter (who carries two copies of the delfa f508 mutation) hung on pretty good until about age 2, but then she really began to fall off her growth curve. She still does not have any lung issues to speak of.

As scary as all of this may seem it will be best once you get some answers - then there are so many things you can do to keep him healthy. Let us know!

 

[ktsmom]

I know how scared you are. I want to help answer your questions but I can't tell by your post if they are doing futher genetic testing on your son to see if both of his CFTR genes are mutated. I agree that 64 is basically considered a positive sweat test result.

Curious as to why they put him on baby food already?

My daughter (who carries two copies of the delfa f508 mutation) hung on pretty good until about age 2, but then she really began to fall off her growth curve. She still does not have any lung issues to speak of.

As scary as all of this may seem it will be best once you get some answers - then there are so many things you can do to keep him healthy. Let us know!

 

[Mommafirst]

Hi Rays Mama,

I'm sorry to hear that you are going through all this. I think it can be very mixed emotions when you are trying to figure out this whole CF thing. In the beginning, I felt the same as you did. My daughter was born with meconium illeus, but otherwise exhibited no CF symptoms. We tested her as a just in case, not really thinking CF was a reality. I still have moments when I think, "can she be too healthy to have CF", but then I realize that this is a progressive disease and come back to reality.

It is great that you don't have a second gene yet, and hopefully they will release him from this diagnosis. But having a 64, I'd think he would be diagnosed. I know its hard to hear. But if he is doing so well now, and you are already on top of everything, he'll have a much better chance at staying healthy longer.

Welcome to the site!! Again big hugs and I'm sorry this is why you are here.

 

[Mommafirst]

Hi Rays Mama,

I'm sorry to hear that you are going through all this. I think it can be very mixed emotions when you are trying to figure out this whole CF thing. In the beginning, I felt the same as you did. My daughter was born with meconium illeus, but otherwise exhibited no CF symptoms. We tested her as a just in case, not really thinking CF was a reality. I still have moments when I think, "can she be too healthy to have CF", but then I realize that this is a progressive disease and come back to reality.

It is great that you don't have a second gene yet, and hopefully they will release him from this diagnosis. But having a 64, I'd think he would be diagnosed. I know its hard to hear. But if he is doing so well now, and you are already on top of everything, he'll have a much better chance at staying healthy longer.

Welcome to the site!! Again big hugs and I'm sorry this is why you are here.

 

[Mommafirst]

Hi Rays Mama,

I'm sorry to hear that you are going through all this. I think it can be very mixed emotions when you are trying to figure out this whole CF thing. In the beginning, I felt the same as you did. My daughter was born with meconium illeus, but otherwise exhibited no CF symptoms. We tested her as a just in case, not really thinking CF was a reality. I still have moments when I think, "can she be too healthy to have CF", but then I realize that this is a progressive disease and come back to reality.

It is great that you don't have a second gene yet, and hopefully they will release him from this diagnosis. But having a 64, I'd think he would be diagnosed. I know its hard to hear. But if he is doing so well now, and you are already on top of everything, he'll have a much better chance at staying healthy longer.

Welcome to the site!! Again big hugs and I'm sorry this is why you are here.

 

[Mommafirst]

Hi Rays Mama,

I'm sorry to hear that you are going through all this. I think it can be very mixed emotions when you are trying to figure out this whole CF thing. In the beginning, I felt the same as you did. My daughter was born with meconium illeus, but otherwise exhibited no CF symptoms. We tested her as a just in case, not really thinking CF was a reality. I still have moments when I think, "can she be too healthy to have CF", but then I realize that this is a progressive disease and come back to reality.

It is great that you don't have a second gene yet, and hopefully they will release him from this diagnosis. But having a 64, I'd think he would be diagnosed. I know its hard to hear. But if he is doing so well now, and you are already on top of everything, he'll have a much better chance at staying healthy longer.

Welcome to the site!! Again big hugs and I'm sorry this is why you are here.

 

[Mommafirst]

Hi Rays Mama,

I'm sorry to hear that you are going through all this. I think it can be very mixed emotions when you are trying to figure out this whole CF thing. In the beginning, I felt the same as you did. My daughter was born with meconium illeus, but otherwise exhibited no CF symptoms. We tested her as a just in case, not really thinking CF was a reality. I still have moments when I think, "can she be too healthy to have CF", but then I realize that this is a progressive disease and come back to reality.

It is great that you don't have a second gene yet, and hopefully they will release him from this diagnosis. But having a 64, I'd think he would be diagnosed. I know its hard to hear. But if he is doing so well now, and you are already on top of everything, he'll have a much better chance at staying healthy longer.

Welcome to the site!! Again big hugs and I'm sorry this is why you are here.

 

[Mommafirst]

Hi Rays Mama,

I'm sorry to hear that you are going through all this. I think it can be very mixed emotions when you are trying to figure out this whole CF thing. In the beginning, I felt the same as you did. My daughter was born with meconium illeus, but otherwise exhibited no CF symptoms. We tested her as a just in case, not really thinking CF was a reality. I still have moments when I think, "can she be too healthy to have CF", but then I realize that this is a progressive disease and come back to reality.

It is great that you don't have a second gene yet, and hopefully they will release him from this diagnosis. But having a 64, I'd think he would be diagnosed. I know its hard to hear. But if he is doing so well now, and you are already on top of everything, he'll have a much better chance at staying healthy longer.

Welcome to the site!! Again big hugs and I'm sorry this is why you are here.

 

[annonymous]

yes, doctors make mistakes all the time and tests are not always 100% accurate. i was in your exact situation nearly 18 months ago with 1 identified mutation and a positive sweat test (although it was a "low" positive) with my newborn son. pretty long story, but bottom line is that the sweat test scores dropped dramatically over time and the dx of cf was in fact changed. maybe it was all a mistake due to his carrier status, improper testing, or whatever else could have influenced the results, but my heart feels like it was a miracle. his growth is still great and he is very healthy to this day. of course, i pray with all of my heart that he stays that way. it's actually kind of difficult for me to share this info on a board knowing most people here are dealing with real cf stuff, and i was just faced with the initial dx and emotional roller coaster that went along with it. but one thing is for sure, it was hell. maybe i am here to let people like you know that there is ALWAYS hope! may your family have peace, strength, and courage throughout your experience.

 

[annonymous]

yes, doctors make mistakes all the time and tests are not always 100% accurate. i was in your exact situation nearly 18 months ago with 1 identified mutation and a positive sweat test (although it was a "low" positive) with my newborn son. pretty long story, but bottom line is that the sweat test scores dropped dramatically over time and the dx of cf was in fact changed. maybe it was all a mistake due to his carrier status, improper testing, or whatever else could have influenced the results, but my heart feels like it was a miracle. his growth is still great and he is very healthy to this day. of course, i pray with all of my heart that he stays that way. it's actually kind of difficult for me to share this info on a board knowing most people here are dealing with real cf stuff, and i was just faced with the initial dx and emotional roller coaster that went along with it. but one thing is for sure, it was hell. maybe i am here to let people like you know that there is ALWAYS hope! may your family have peace, strength, and courage throughout your experience.

 

[annonymous]

yes, doctors make mistakes all the time and tests are not always 100% accurate. i was in your exact situation nearly 18 months ago with 1 identified mutation and a positive sweat test (although it was a "low" positive) with my newborn son. pretty long story, but bottom line is that the sweat test scores dropped dramatically over time and the dx of cf was in fact changed. maybe it was all a mistake due to his carrier status, improper testing, or whatever else could have influenced the results, but my heart feels like it was a miracle. his growth is still great and he is very healthy to this day. of course, i pray with all of my heart that he stays that way. it's actually kind of difficult for me to share this info on a board knowing most people here are dealing with real cf stuff, and i was just faced with the initial dx and emotional roller coaster that went along with it. but one thing is for sure, it was hell. maybe i am here to let people like you know that there is ALWAYS hope! may your family have peace, strength, and courage throughout your experience.

 

[annonymous]

yes, doctors make mistakes all the time and tests are not always 100% accurate. i was in your exact situation nearly 18 months ago with 1 identified mutation and a positive sweat test (although it was a "low" positive) with my newborn son. pretty long story, but bottom line is that the sweat test scores dropped dramatically over time and the dx of cf was in fact changed. maybe it was all a mistake due to his carrier status, improper testing, or whatever else could have influenced the results, but my heart feels like it was a miracle. his growth is still great and he is very healthy to this day. of course, i pray with all of my heart that he stays that way. it's actually kind of difficult for me to share this info on a board knowing most people here are dealing with real cf stuff, and i was just faced with the initial dx and emotional roller coaster that went along with it. but one thing is for sure, it was hell. maybe i am here to let people like you know that there is ALWAYS hope! may your family have peace, strength, and courage throughout your experience.

 

[annonymous]

yes, doctors make mistakes all the time and tests are not always 100% accurate. i was in your exact situation nearly 18 months ago with 1 identified mutation and a positive sweat test (although it was a "low" positive) with my newborn son. pretty long story, but bottom line is that the sweat test scores dropped dramatically over time and the dx of cf was in fact changed. maybe it was all a mistake due to his carrier status, improper testing, or whatever else could have influenced the results, but my heart feels like it was a miracle. his growth is still great and he is very healthy to this day. of course, i pray with all of my heart that he stays that way. it's actually kind of difficult for me to share this info on a board knowing most people here are dealing with real cf stuff, and i was just faced with the initial dx and emotional roller coaster that went along with it. but one thing is for sure, it was hell. maybe i am here to let people like you know that there is ALWAYS hope! may your family have peace, strength, and courage throughout your experience.

 

[annonymous]

yes, doctors make mistakes all the time and tests are not always 100% accurate. i was in your exact situation nearly 18 months ago with 1 identified mutation and a positive sweat test (although it was a "low" positive) with my newborn son. pretty long story, but bottom line is that the sweat test scores dropped dramatically over time and the dx of cf was in fact changed. maybe it was all a mistake due to his carrier status, improper testing, or whatever else could have influenced the results, but my heart feels like it was a miracle. his growth is still great and he is very healthy to this day. of course, i pray with all of my heart that he stays that way. it's actually kind of difficult for me to share this info on a board knowing most people here are dealing with real cf stuff, and i was just faced with the initial dx and emotional roller coaster that went along with it. but one thing is for sure, it was hell. maybe i am here to let people like you know that there is ALWAYS hope! may your family have peace, strength, and courage throughout your experience.

 

[Ratatosk]

CFers are born with normal lungs. With thick sticky mucus, increased infection, eventually the lungs will become affected. CF is a progresive disease. The other thing to consider is most regular doctors don't know what to listen for when listening so someone's lungs -- heck the stethoscope was invented over a hundred YEARS ago -- I can't tell you the number of times DS has been to the peds doctor and I'm told "his lungs are clear" -- later to find he's got bronchitis or an upper respiratory virus by his CF doctor.

DS had a ravenous appetite prior to being diagnosed. I remember yanking the bottle out of his mouth the first time I fed him, asking DH, how much are babies supposed to eat, I didn't think their tummies could hold this much food.

DS's sweat test was a normal 32, so I can understand questioning the diagnosis. For months, DH and I continued with CPT & nebs 4 times a day, enzymes, antibiotics, bile salts, vitamins -- all the while saying "If someone comes back eventually and tells us they made a mistake, at least he'll have very health lungs" Diagnosis hit home when he cultured pseudomonas.

 

[Ratatosk]

CFers are born with normal lungs. With thick sticky mucus, increased infection, eventually the lungs will become affected. CF is a progresive disease. The other thing to consider is most regular doctors don't know what to listen for when listening so someone's lungs -- heck the stethoscope was invented over a hundred YEARS ago -- I can't tell you the number of times DS has been to the peds doctor and I'm told "his lungs are clear" -- later to find he's got bronchitis or an upper respiratory virus by his CF doctor.

DS had a ravenous appetite prior to being diagnosed. I remember yanking the bottle out of his mouth the first time I fed him, asking DH, how much are babies supposed to eat, I didn't think their tummies could hold this much food.

DS's sweat test was a normal 32, so I can understand questioning the diagnosis. For months, DH and I continued with CPT & nebs 4 times a day, enzymes, antibiotics, bile salts, vitamins -- all the while saying "If someone comes back eventually and tells us they made a mistake, at least he'll have very health lungs" Diagnosis hit home when he cultured pseudomonas.

 

[Ratatosk]

CFers are born with normal lungs. With thick sticky mucus, increased infection, eventually the lungs will become affected. CF is a progresive disease. The other thing to consider is most regular doctors don't know what to listen for when listening so someone's lungs -- heck the stethoscope was invented over a hundred YEARS ago -- I can't tell you the number of times DS has been to the peds doctor and I'm told "his lungs are clear" -- later to find he's got bronchitis or an upper respiratory virus by his CF doctor.

DS had a ravenous appetite prior to being diagnosed. I remember yanking the bottle out of his mouth the first time I fed him, asking DH, how much are babies supposed to eat, I didn't think their tummies could hold this much food.

DS's sweat test was a normal 32, so I can understand questioning the diagnosis. For months, DH and I continued with CPT & nebs 4 times a day, enzymes, antibiotics, bile salts, vitamins -- all the while saying "If someone comes back eventually and tells us they made a mistake, at least he'll have very health lungs" Diagnosis hit home when he cultured pseudomonas.

 

[Ratatosk]

CFers are born with normal lungs. With thick sticky mucus, increased infection, eventually the lungs will become affected. CF is a progresive disease. The other thing to consider is most regular doctors don't know what to listen for when listening so someone's lungs -- heck the stethoscope was invented over a hundred YEARS ago -- I can't tell you the number of times DS has been to the peds doctor and I'm told "his lungs are clear" -- later to find he's got bronchitis or an upper respiratory virus by his CF doctor.

DS had a ravenous appetite prior to being diagnosed. I remember yanking the bottle out of his mouth the first time I fed him, asking DH, how much are babies supposed to eat, I didn't think their tummies could hold this much food.

DS's sweat test was a normal 32, so I can understand questioning the diagnosis. For months, DH and I continued with CPT & nebs 4 times a day, enzymes, antibiotics, bile salts, vitamins -- all the while saying "If someone comes back eventually and tells us they made a mistake, at least he'll have very health lungs" Diagnosis hit home when he cultured pseudomonas.