Expecting a CF Child

[wingnut]

Hi,
I have three boys with that same mutation. We had no family history, so it was a huge surprise. Our oldest was diagnosed at 13, because of a cough that persisted despite inhalers. The other were then tested, even though they were symptom free, and were diagnosed at ages 6 and 9. That was three years ago. They are all pancreas sufficient, so are growing great without enzymes. My 16-year-old is 5'9" and 130 lbs. All of their PFT's are above 100%. One runs track and competes in martial arts, one plays hockey and baseball, and the other plays hockey, baseball, and football. We do maintenance medication daily and see our docs every three months.

Typically A455E is associated with a milder phenotype, and is often pancreas sufficient. That's why my kids were diagnosed so late. They did not have that "failure to thrive" thing, and they had little or no lung issues. Praise God.

My goal is to prevent any lung damage until a cure comes along. With their level of activity, I don't think that should be a problem!

Best of luck with your little one!

 

[wingnut]

Hi,
I have three boys with that same mutation. We had no family history, so it was a huge surprise. Our oldest was diagnosed at 13, because of a cough that persisted despite inhalers. The other were then tested, even though they were symptom free, and were diagnosed at ages 6 and 9. That was three years ago. They are all pancreas sufficient, so are growing great without enzymes. My 16-year-old is 5'9" and 130 lbs. All of their PFT's are above 100%. One runs track and competes in martial arts, one plays hockey and baseball, and the other plays hockey, baseball, and football. We do maintenance medication daily and see our docs every three months.

Typically A455E is associated with a milder phenotype, and is often pancreas sufficient. That's why my kids were diagnosed so late. They did not have that "failure to thrive" thing, and they had little or no lung issues. Praise God.

My goal is to prevent any lung damage until a cure comes along. With their level of activity, I don't think that should be a problem!

Best of luck with your little one!

 

[wingnut]

Hi,
I have three boys with that same mutation. We had no family history, so it was a huge surprise. Our oldest was diagnosed at 13, because of a cough that persisted despite inhalers. The other were then tested, even though they were symptom free, and were diagnosed at ages 6 and 9. That was three years ago. They are all pancreas sufficient, so are growing great without enzymes. My 16-year-old is 5'9" and 130 lbs. All of their PFT's are above 100%. One runs track and competes in martial arts, one plays hockey and baseball, and the other plays hockey, baseball, and football. We do maintenance medication daily and see our docs every three months.

Typically A455E is associated with a milder phenotype, and is often pancreas sufficient. That's why my kids were diagnosed so late. They did not have that "failure to thrive" thing, and they had little or no lung issues. Praise God.

My goal is to prevent any lung damage until a cure comes along. With their level of activity, I don't think that should be a problem!

Best of luck with your little one!

 

[wingnut]

Hi,
I have three boys with that same mutation. We had no family history, so it was a huge surprise. Our oldest was diagnosed at 13, because of a cough that persisted despite inhalers. The other were then tested, even though they were symptom free, and were diagnosed at ages 6 and 9. That was three years ago. They are all pancreas sufficient, so are growing great without enzymes. My 16-year-old is 5'9" and 130 lbs. All of their PFT's are above 100%. One runs track and competes in martial arts, one plays hockey and baseball, and the other plays hockey, baseball, and football. We do maintenance medication daily and see our docs every three months.

Typically A455E is associated with a milder phenotype, and is often pancreas sufficient. That's why my kids were diagnosed so late. They did not have that "failure to thrive" thing, and they had little or no lung issues. Praise God.

My goal is to prevent any lung damage until a cure comes along. With their level of activity, I don't think that should be a problem!

Best of luck with your little one!

 

[wingnut]

Hi,
<br />I have three boys with that same mutation. We had no family history, so it was a huge surprise. Our oldest was diagnosed at 13, because of a cough that persisted despite inhalers. The other were then tested, even though they were symptom free, and were diagnosed at ages 6 and 9. That was three years ago. They are all pancreas sufficient, so are growing great without enzymes. My 16-year-old is 5'9" and 130 lbs. All of their PFT's are above 100%. One runs track and competes in martial arts, one plays hockey and baseball, and the other plays hockey, baseball, and football. We do maintenance medication daily and see our docs every three months.
<br />
<br />Typically A455E is associated with a milder phenotype, and is often pancreas sufficient. That's why my kids were diagnosed so late. They did not have that "failure to thrive" thing, and they had little or no lung issues. Praise God.
<br />
<br />My goal is to prevent any lung damage until a cure comes along. With their level of activity, I don't think that should be a problem!
<br />
<br />Best of luck with your little one!

 

[carriepathy]

This is really interesting. Do you know where I could find out what level our son's mutation is? He has delta F508 and 3659delC.

 

[carriepathy]

This is really interesting. Do you know where I could find out what level our son's mutation is? He has delta F508 and 3659delC.

 

[carriepathy]

This is really interesting. Do you know where I could find out what level our son's mutation is? He has delta F508 and 3659delC.

 

[carriepathy]

This is really interesting. Do you know where I could find out what level our son's mutation is? He has delta F508 and 3659delC.

 

[carriepathy]

This is really interesting. Do you know where I could find out what level our son's mutation is? He has delta F508 and 3659delC.

 

[just1more]

Carrie, I can't tell you how to interpret, but:

DF508 is a Class II
3659delC is a Class I

(I got this from a journal article on CF that listed the mutations in their subjects & the classes, 3659delC just happened to be one of them)

 

[just1more]

Carrie, I can't tell you how to interpret, but:

DF508 is a Class II
3659delC is a Class I

(I got this from a journal article on CF that listed the mutations in their subjects & the classes, 3659delC just happened to be one of them)

 

[just1more]

Carrie, I can't tell you how to interpret, but:

DF508 is a Class II
3659delC is a Class I

(I got this from a journal article on CF that listed the mutations in their subjects & the classes, 3659delC just happened to be one of them)

 

[just1more]

Carrie, I can't tell you how to interpret, but:

DF508 is a Class II
3659delC is a Class I

(I got this from a journal article on CF that listed the mutations in their subjects & the classes, 3659delC just happened to be one of them)

 

[just1more]

Carrie, I can't tell you how to interpret, but:
<br />
<br />DF508 is a Class II
<br />3659delC is a Class I
<br />
<br />(I got this from a journal article on CF that listed the mutations in their subjects & the classes, 3659delC just happened to be one of them)

 

[carriepathy]

Thanks Tom - hard to hear but better to know.

 

[carriepathy]

Thanks Tom - hard to hear but better to know.

 

[carriepathy]

Thanks Tom - hard to hear but better to know.

 

[carriepathy]

Thanks Tom - hard to hear but better to know.

 

[carriepathy]

Thanks Tom - hard to hear but better to know.