My son diagnosed at 13

C

cathycat

Guest
This is my first entry to the forum. My son Brian was diagnosed in November 2007, just after his 13th birthday. He has basically been treated for bronchitis on and off, was diagnosed last year with mild asthma. He has always been above the 50th percentile for both height and weight. Since his dx, the doctors said that he compensated by eating more. I really didn't think much of it since he was a "growing boy". Needless to say...we are devastated at the dx.

When he got a cough, he would be placed on antibiotics and would improve...if the cough lingered, he was prescribed a cough syrup and sent for chest xray.

I had my second child in Nov 2006 and we found out that we were carriers of CF. I asked about Brian and the pediatrician said that he may be a carrier but he doesn't have CF.
 
C

cathycat

Guest
This is my first entry to the forum. My son Brian was diagnosed in November 2007, just after his 13th birthday. He has basically been treated for bronchitis on and off, was diagnosed last year with mild asthma. He has always been above the 50th percentile for both height and weight. Since his dx, the doctors said that he compensated by eating more. I really didn't think much of it since he was a "growing boy". Needless to say...we are devastated at the dx.

When he got a cough, he would be placed on antibiotics and would improve...if the cough lingered, he was prescribed a cough syrup and sent for chest xray.

I had my second child in Nov 2006 and we found out that we were carriers of CF. I asked about Brian and the pediatrician said that he may be a carrier but he doesn't have CF.
 
C

cathycat

Guest
This is my first entry to the forum. My son Brian was diagnosed in November 2007, just after his 13th birthday. He has basically been treated for bronchitis on and off, was diagnosed last year with mild asthma. He has always been above the 50th percentile for both height and weight. Since his dx, the doctors said that he compensated by eating more. I really didn't think much of it since he was a "growing boy". Needless to say...we are devastated at the dx.

When he got a cough, he would be placed on antibiotics and would improve...if the cough lingered, he was prescribed a cough syrup and sent for chest xray.

I had my second child in Nov 2006 and we found out that we were carriers of CF. I asked about Brian and the pediatrician said that he may be a carrier but he doesn't have CF.
 
C

cathycat

Guest
This is my first entry to the forum. My son Brian was diagnosed in November 2007, just after his 13th birthday. He has basically been treated for bronchitis on and off, was diagnosed last year with mild asthma. He has always been above the 50th percentile for both height and weight. Since his dx, the doctors said that he compensated by eating more. I really didn't think much of it since he was a "growing boy". Needless to say...we are devastated at the dx.

When he got a cough, he would be placed on antibiotics and would improve...if the cough lingered, he was prescribed a cough syrup and sent for chest xray.

I had my second child in Nov 2006 and we found out that we were carriers of CF. I asked about Brian and the pediatrician said that he may be a carrier but he doesn't have CF.
 
C

cathycat

Guest
This is my first entry to the forum. My son Brian was diagnosed in November 2007, just after his 13th birthday. He has basically been treated for bronchitis on and off, was diagnosed last year with mild asthma. He has always been above the 50th percentile for both height and weight. Since his dx, the doctors said that he compensated by eating more. I really didn't think much of it since he was a "growing boy". Needless to say...we are devastated at the dx.
<br />
<br />When he got a cough, he would be placed on antibiotics and would improve...if the cough lingered, he was prescribed a cough syrup and sent for chest xray.
<br />
<br />I had my second child in Nov 2006 and we found out that we were carriers of CF. I asked about Brian and the pediatrician said that he may be a carrier but he doesn't have CF.
 

just1more

New member
First of all welcome to the board, not necessarily a group to 'want' to join, but the community is great here and it helps to have others that are living the same things.

As for your son, I'm sorry about his dx but I do want to confirm: how did they finally dx him? Was it by genetic testing? If not you need to push to have it done, since they know you both are carriers it would be very easy to check the kids as they only have to look for those 2 most likely. This is the only definative way to know for sure; and while every case is different there are some basic trends that can be seen based upon various mutation/combinations.
 

just1more

New member
First of all welcome to the board, not necessarily a group to 'want' to join, but the community is great here and it helps to have others that are living the same things.

As for your son, I'm sorry about his dx but I do want to confirm: how did they finally dx him? Was it by genetic testing? If not you need to push to have it done, since they know you both are carriers it would be very easy to check the kids as they only have to look for those 2 most likely. This is the only definative way to know for sure; and while every case is different there are some basic trends that can be seen based upon various mutation/combinations.
 

just1more

New member
First of all welcome to the board, not necessarily a group to 'want' to join, but the community is great here and it helps to have others that are living the same things.

As for your son, I'm sorry about his dx but I do want to confirm: how did they finally dx him? Was it by genetic testing? If not you need to push to have it done, since they know you both are carriers it would be very easy to check the kids as they only have to look for those 2 most likely. This is the only definative way to know for sure; and while every case is different there are some basic trends that can be seen based upon various mutation/combinations.
 

just1more

New member
First of all welcome to the board, not necessarily a group to 'want' to join, but the community is great here and it helps to have others that are living the same things.

As for your son, I'm sorry about his dx but I do want to confirm: how did they finally dx him? Was it by genetic testing? If not you need to push to have it done, since they know you both are carriers it would be very easy to check the kids as they only have to look for those 2 most likely. This is the only definative way to know for sure; and while every case is different there are some basic trends that can be seen based upon various mutation/combinations.
 

just1more

New member
First of all welcome to the board, not necessarily a group to 'want' to join, but the community is great here and it helps to have others that are living the same things.
<br />
<br />As for your son, I'm sorry about his dx but I do want to confirm: how did they finally dx him? Was it by genetic testing? If not you need to push to have it done, since they know you both are carriers it would be very easy to check the kids as they only have to look for those 2 most likely. This is the only definative way to know for sure; and while every case is different there are some basic trends that can be seen based upon various mutation/combinations.
 

JazzysMom

New member
Welcome to our little community! I am sorry to hear of your sons diagnosed, but better to find the true cause & treat it correctly then to have more lung damage that necessary!

Did they do genetic testing on your other child? If not how do they know he DOESNT have CF even they arent even sure if he is a carrier?

I hope you find the forum helpful!
 

JazzysMom

New member
Welcome to our little community! I am sorry to hear of your sons diagnosed, but better to find the true cause & treat it correctly then to have more lung damage that necessary!

Did they do genetic testing on your other child? If not how do they know he DOESNT have CF even they arent even sure if he is a carrier?

I hope you find the forum helpful!
 

JazzysMom

New member
Welcome to our little community! I am sorry to hear of your sons diagnosed, but better to find the true cause & treat it correctly then to have more lung damage that necessary!

Did they do genetic testing on your other child? If not how do they know he DOESNT have CF even they arent even sure if he is a carrier?

I hope you find the forum helpful!
 

JazzysMom

New member
Welcome to our little community! I am sorry to hear of your sons diagnosed, but better to find the true cause & treat it correctly then to have more lung damage that necessary!

Did they do genetic testing on your other child? If not how do they know he DOESNT have CF even they arent even sure if he is a carrier?

I hope you find the forum helpful!
 

JazzysMom

New member
Welcome to our little community! I am sorry to hear of your sons diagnosed, but better to find the true cause & treat it correctly then to have more lung damage that necessary!
<br />
<br />Did they do genetic testing on your other child? If not how do they know he DOESNT have CF even they arent even sure if he is a carrier?
<br />
<br />I hope you find the forum helpful!
 

Alyssa

New member
Welcome - I too was thrown a little bit by whether or not your son does indeed have the CF diagnosis - but I'm assuming you were back tracking in your post...first in 2006 you were told you and your husband were carriers and your son was probably a carrier, but by Nov 2007 it was confirmed that he does have both gene....is that correct?

So many doctors are ignorant of the fact that a person with CF can live a relatively normal life for many years ... they still have the old school training that says "children with CF die by the age of 7" or something to that effect in their brains... there are adults in their 40's and older just now being diagnosed.... some of the better informed and educated doctors know this and would never had made the statement to you that Brian would for sure not have CF.

If you care to, check out my blog - it has detailed information about my daughter being diagnosed at age 14 and my son being diagnosed at age 18... I'm pretty sure you will see some similarities to your situation in our story.

So do you know the status of your second child yet?
 

Alyssa

New member
Welcome - I too was thrown a little bit by whether or not your son does indeed have the CF diagnosis - but I'm assuming you were back tracking in your post...first in 2006 you were told you and your husband were carriers and your son was probably a carrier, but by Nov 2007 it was confirmed that he does have both gene....is that correct?

So many doctors are ignorant of the fact that a person with CF can live a relatively normal life for many years ... they still have the old school training that says "children with CF die by the age of 7" or something to that effect in their brains... there are adults in their 40's and older just now being diagnosed.... some of the better informed and educated doctors know this and would never had made the statement to you that Brian would for sure not have CF.

If you care to, check out my blog - it has detailed information about my daughter being diagnosed at age 14 and my son being diagnosed at age 18... I'm pretty sure you will see some similarities to your situation in our story.

So do you know the status of your second child yet?
 

Alyssa

New member
Welcome - I too was thrown a little bit by whether or not your son does indeed have the CF diagnosis - but I'm assuming you were back tracking in your post...first in 2006 you were told you and your husband were carriers and your son was probably a carrier, but by Nov 2007 it was confirmed that he does have both gene....is that correct?

So many doctors are ignorant of the fact that a person with CF can live a relatively normal life for many years ... they still have the old school training that says "children with CF die by the age of 7" or something to that effect in their brains... there are adults in their 40's and older just now being diagnosed.... some of the better informed and educated doctors know this and would never had made the statement to you that Brian would for sure not have CF.

If you care to, check out my blog - it has detailed information about my daughter being diagnosed at age 14 and my son being diagnosed at age 18... I'm pretty sure you will see some similarities to your situation in our story.

So do you know the status of your second child yet?
 

Alyssa

New member
Welcome - I too was thrown a little bit by whether or not your son does indeed have the CF diagnosis - but I'm assuming you were back tracking in your post...first in 2006 you were told you and your husband were carriers and your son was probably a carrier, but by Nov 2007 it was confirmed that he does have both gene....is that correct?

So many doctors are ignorant of the fact that a person with CF can live a relatively normal life for many years ... they still have the old school training that says "children with CF die by the age of 7" or something to that effect in their brains... there are adults in their 40's and older just now being diagnosed.... some of the better informed and educated doctors know this and would never had made the statement to you that Brian would for sure not have CF.

If you care to, check out my blog - it has detailed information about my daughter being diagnosed at age 14 and my son being diagnosed at age 18... I'm pretty sure you will see some similarities to your situation in our story.

So do you know the status of your second child yet?
 

Alyssa

New member
Welcome - I too was thrown a little bit by whether or not your son does indeed have the CF diagnosis - but I'm assuming you were back tracking in your post...first in 2006 you were told you and your husband were carriers and your son was probably a carrier, but by Nov 2007 it was confirmed that he does have both gene....is that correct?
<br />
<br />So many doctors are ignorant of the fact that a person with CF can live a relatively normal life for many years ... they still have the old school training that says "children with CF die by the age of 7" or something to that effect in their brains... there are adults in their 40's and older just now being diagnosed.... some of the better informed and educated doctors know this and would never had made the statement to you that Brian would for sure not have CF.
<br />
<br />If you care to, check out my blog - it has detailed information about my daughter being diagnosed at age 14 and my son being diagnosed at age 18... I'm pretty sure you will see some similarities to your situation in our story.
<br />
<br />So do you know the status of your second child yet?
 
Top