i am confused

Ratatosk

Administrator
Staff member
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

Administrator
Staff member
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.
 

raysmama

New member
well I would like to begin with a tahnk you to all of you that answered my post. But i did get that call I have be dreading for weeks now and they found the second mutation in rays cf gene i will be going to see his specialist on monday . and he still wants to do a second sweat test.
So my question is now where do i go from here?
 

raysmama

New member
well I would like to begin with a tahnk you to all of you that answered my post. But i did get that call I have be dreading for weeks now and they found the second mutation in rays cf gene i will be going to see his specialist on monday . and he still wants to do a second sweat test.
So my question is now where do i go from here?
 

raysmama

New member
well I would like to begin with a tahnk you to all of you that answered my post. But i did get that call I have be dreading for weeks now and they found the second mutation in rays cf gene i will be going to see his specialist on monday . and he still wants to do a second sweat test.
So my question is now where do i go from here?
 

raysmama

New member
well I would like to begin with a tahnk you to all of you that answered my post. But i did get that call I have be dreading for weeks now and they found the second mutation in rays cf gene i will be going to see his specialist on monday . and he still wants to do a second sweat test.
So my question is now where do i go from here?
 

raysmama

New member
well I would like to begin with a tahnk you to all of you that answered my post. But i did get that call I have be dreading for weeks now and they found the second mutation in rays cf gene i will be going to see his specialist on monday . and he still wants to do a second sweat test.
So my question is now where do i go from here?
 

raysmama

New member
well I would like to begin with a tahnk you to all of you that answered my post. But i did get that call I have be dreading for weeks now and they found the second mutation in rays cf gene i will be going to see his specialist on monday . and he still wants to do a second sweat test.
So my question is now where do i go from here?
 

NoExcuses

New member
Sorry to hear about the call.

What is the point of the 2nd sweat test? It's not going to tell you anything - 2 CF genes = Cystic Fibrosis, regardless of what a sweat test will tell you.

Where to go from here? Go to www.cff.org and look up a CF Center in your area.

Keep us posted.
 

NoExcuses

New member
Sorry to hear about the call.

What is the point of the 2nd sweat test? It's not going to tell you anything - 2 CF genes = Cystic Fibrosis, regardless of what a sweat test will tell you.

Where to go from here? Go to www.cff.org and look up a CF Center in your area.

Keep us posted.
 

NoExcuses

New member
Sorry to hear about the call.

What is the point of the 2nd sweat test? It's not going to tell you anything - 2 CF genes = Cystic Fibrosis, regardless of what a sweat test will tell you.

Where to go from here? Go to www.cff.org and look up a CF Center in your area.

Keep us posted.
 

NoExcuses

New member
Sorry to hear about the call.

What is the point of the 2nd sweat test? It's not going to tell you anything - 2 CF genes = Cystic Fibrosis, regardless of what a sweat test will tell you.

Where to go from here? Go to www.cff.org and look up a CF Center in your area.

Keep us posted.
 

NoExcuses

New member
Sorry to hear about the call.

What is the point of the 2nd sweat test? It's not going to tell you anything - 2 CF genes = Cystic Fibrosis, regardless of what a sweat test will tell you.

Where to go from here? Go to www.cff.org and look up a CF Center in your area.

Keep us posted.
 

NoExcuses

New member
Sorry to hear about the call.

What is the point of the 2nd sweat test? It's not going to tell you anything - 2 CF genes = Cystic Fibrosis, regardless of what a sweat test will tell you.

Where to go from here? Go to www.cff.org and look up a CF Center in your area.

Keep us posted.
 

ktsmom

New member
Hi raysmama - I got your PM but I'm going to reply here. I am really sorry for the diagnosis but I assure you - you CAN do this! Just give yourself some time.

I think there is still some diagnostic value to the sweat test (<b>okok</b> has the reasons for this)

It varies by specailist/clinic as to what will happen at your appointment on Monday. You will more than likely be bombarded with information. Don't be afraid to ask questions, and take notes, until you understand. However, it will take time to absorb it all. They will probably do a chest x-ray, throat swab, and lots of blood draws for various blood work like vitamin levels, liver function, etc.

cff.org has a lot of information pahmplet-type things you can read. Don't trust everything you read on some internet sites. Some of the information is old and out of date.

Try to take it one day at a time and love that little boy of yours. Focus on the things the doc tells you to do about your son's specific symptoms. The rest will come in its own time. Take care!
 

ktsmom

New member
Hi raysmama - I got your PM but I'm going to reply here. I am really sorry for the diagnosis but I assure you - you CAN do this! Just give yourself some time.

I think there is still some diagnostic value to the sweat test (<b>okok</b> has the reasons for this)

It varies by specailist/clinic as to what will happen at your appointment on Monday. You will more than likely be bombarded with information. Don't be afraid to ask questions, and take notes, until you understand. However, it will take time to absorb it all. They will probably do a chest x-ray, throat swab, and lots of blood draws for various blood work like vitamin levels, liver function, etc.

cff.org has a lot of information pahmplet-type things you can read. Don't trust everything you read on some internet sites. Some of the information is old and out of date.

Try to take it one day at a time and love that little boy of yours. Focus on the things the doc tells you to do about your son's specific symptoms. The rest will come in its own time. Take care!
 

ktsmom

New member
Hi raysmama - I got your PM but I'm going to reply here. I am really sorry for the diagnosis but I assure you - you CAN do this! Just give yourself some time.

I think there is still some diagnostic value to the sweat test (<b>okok</b> has the reasons for this)

It varies by specailist/clinic as to what will happen at your appointment on Monday. You will more than likely be bombarded with information. Don't be afraid to ask questions, and take notes, until you understand. However, it will take time to absorb it all. They will probably do a chest x-ray, throat swab, and lots of blood draws for various blood work like vitamin levels, liver function, etc.

cff.org has a lot of information pahmplet-type things you can read. Don't trust everything you read on some internet sites. Some of the information is old and out of date.

Try to take it one day at a time and love that little boy of yours. Focus on the things the doc tells you to do about your son's specific symptoms. The rest will come in its own time. Take care!
 

ktsmom

New member
Hi raysmama - I got your PM but I'm going to reply here. I am really sorry for the diagnosis but I assure you - you CAN do this! Just give yourself some time.

I think there is still some diagnostic value to the sweat test (<b>okok</b> has the reasons for this)

It varies by specailist/clinic as to what will happen at your appointment on Monday. You will more than likely be bombarded with information. Don't be afraid to ask questions, and take notes, until you understand. However, it will take time to absorb it all. They will probably do a chest x-ray, throat swab, and lots of blood draws for various blood work like vitamin levels, liver function, etc.

cff.org has a lot of information pahmplet-type things you can read. Don't trust everything you read on some internet sites. Some of the information is old and out of date.

Try to take it one day at a time and love that little boy of yours. Focus on the things the doc tells you to do about your son's specific symptoms. The rest will come in its own time. Take care!
 

ktsmom

New member
Hi raysmama - I got your PM but I'm going to reply here. I am really sorry for the diagnosis but I assure you - you CAN do this! Just give yourself some time.

I think there is still some diagnostic value to the sweat test (<b>okok</b> has the reasons for this)

It varies by specailist/clinic as to what will happen at your appointment on Monday. You will more than likely be bombarded with information. Don't be afraid to ask questions, and take notes, until you understand. However, it will take time to absorb it all. They will probably do a chest x-ray, throat swab, and lots of blood draws for various blood work like vitamin levels, liver function, etc.

cff.org has a lot of information pahmplet-type things you can read. Don't trust everything you read on some internet sites. Some of the information is old and out of date.

Try to take it one day at a time and love that little boy of yours. Focus on the things the doc tells you to do about your son's specific symptoms. The rest will come in its own time. Take care!
 

ktsmom

New member
Hi raysmama - I got your PM but I'm going to reply here. I am really sorry for the diagnosis but I assure you - you CAN do this! Just give yourself some time.

I think there is still some diagnostic value to the sweat test (<b>okok</b> has the reasons for this)

It varies by specailist/clinic as to what will happen at your appointment on Monday. You will more than likely be bombarded with information. Don't be afraid to ask questions, and take notes, until you understand. However, it will take time to absorb it all. They will probably do a chest x-ray, throat swab, and lots of blood draws for various blood work like vitamin levels, liver function, etc.

cff.org has a lot of information pahmplet-type things you can read. Don't trust everything you read on some internet sites. Some of the information is old and out of date.

Try to take it one day at a time and love that little boy of yours. Focus on the things the doc tells you to do about your son's specific symptoms. The rest will come in its own time. Take care!
 
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