Delta F508

jess108 · Jul 31, 2007

My daughter is 19 months old with CF. She has 2 Delta F508 mutations. Until I started joining a few of these posting groups I didn't realize how healthy she really is. She takes an extremely low dose of enzymes (1-2 Creon 10 before each meal or snack depending on fat content), and takes no daily medications. She has an inhaler for when she gets sick which is only every few months, and only for a couple weeks maybe. She has been on oral antibiotics quite a few times, but most were precautionary. She has actually had less colds then her cousins (without CF) and most of her colds are just that, and have no effect on her lungs.
I was always told by her CF team that her having both Delta F508 meant her type of CF was the most severe, but besides her enzymes she is "normal".

Is it possible for her to have an extremely mild case, even though she has both Delta F508 mutations? I am definately not looking a gift horse in the mouth, I am so thankful for her being so healthy, it is all we could ever want for her. She was DX at 3 days old by blood test because my husband and I knew we were carriers. Otherwise I sometimes wonder if we would even know yet.

I guess I am a little worried that the carpet will fall out from under me one day, and I know that is possible, but it sure would be nice to know it is also possible that she could just have a very mild case.

Thanks!

jess108 · Jul 31, 2007

My daughter is 19 months old with CF. She has 2 Delta F508 mutations. Until I started joining a few of these posting groups I didn't realize how healthy she really is. She takes an extremely low dose of enzymes (1-2 Creon 10 before each meal or snack depending on fat content), and takes no daily medications. She has an inhaler for when she gets sick which is only every few months, and only for a couple weeks maybe. She has been on oral antibiotics quite a few times, but most were precautionary. She has actually had less colds then her cousins (without CF) and most of her colds are just that, and have no effect on her lungs.
I was always told by her CF team that her having both Delta F508 meant her type of CF was the most severe, but besides her enzymes she is "normal".

Is it possible for her to have an extremely mild case, even though she has both Delta F508 mutations? I am definately not looking a gift horse in the mouth, I am so thankful for her being so healthy, it is all we could ever want for her. She was DX at 3 days old by blood test because my husband and I knew we were carriers. Otherwise I sometimes wonder if we would even know yet.

I guess I am a little worried that the carpet will fall out from under me one day, and I know that is possible, but it sure would be nice to know it is also possible that she could just have a very mild case.

Thanks!

jess108 · Jul 31, 2007

My daughter is 19 months old with CF. She has 2 Delta F508 mutations. Until I started joining a few of these posting groups I didn't realize how healthy she really is. She takes an extremely low dose of enzymes (1-2 Creon 10 before each meal or snack depending on fat content), and takes no daily medications. She has an inhaler for when she gets sick which is only every few months, and only for a couple weeks maybe. She has been on oral antibiotics quite a few times, but most were precautionary. She has actually had less colds then her cousins (without CF) and most of her colds are just that, and have no effect on her lungs.
I was always told by her CF team that her having both Delta F508 meant her type of CF was the most severe, but besides her enzymes she is "normal".

Is it possible for her to have an extremely mild case, even though she has both Delta F508 mutations? I am definately not looking a gift horse in the mouth, I am so thankful for her being so healthy, it is all we could ever want for her. She was DX at 3 days old by blood test because my husband and I knew we were carriers. Otherwise I sometimes wonder if we would even know yet.

I guess I am a little worried that the carpet will fall out from under me one day, and I know that is possible, but it sure would be nice to know it is also possible that she could just have a very mild case.

Thanks!

jess108 · Jul 31, 2007

My daughter is 19 months old with CF. She has 2 Delta F508 mutations. Until I started joining a few of these posting groups I didn't realize how healthy she really is. She takes an extremely low dose of enzymes (1-2 Creon 10 before each meal or snack depending on fat content), and takes no daily medications. She has an inhaler for when she gets sick which is only every few months, and only for a couple weeks maybe. She has been on oral antibiotics quite a few times, but most were precautionary. She has actually had less colds then her cousins (without CF) and most of her colds are just that, and have no effect on her lungs.
I was always told by her CF team that her having both Delta F508 meant her type of CF was the most severe, but besides her enzymes she is "normal".

Is it possible for her to have an extremely mild case, even though she has both Delta F508 mutations? I am definately not looking a gift horse in the mouth, I am so thankful for her being so healthy, it is all we could ever want for her. She was DX at 3 days old by blood test because my husband and I knew we were carriers. Otherwise I sometimes wonder if we would even know yet.

I guess I am a little worried that the carpet will fall out from under me one day, and I know that is possible, but it sure would be nice to know it is also possible that she could just have a very mild case.

Thanks!

jess108 · Jul 31, 2007

My daughter is 19 months old with CF. She has 2 Delta F508 mutations. Until I started joining a few of these posting groups I didn't realize how healthy she really is. She takes an extremely low dose of enzymes (1-2 Creon 10 before each meal or snack depending on fat content), and takes no daily medications. She has an inhaler for when she gets sick which is only every few months, and only for a couple weeks maybe. She has been on oral antibiotics quite a few times, but most were precautionary. She has actually had less colds then her cousins (without CF) and most of her colds are just that, and have no effect on her lungs.
I was always told by her CF team that her having both Delta F508 meant her type of CF was the most severe, but besides her enzymes she is "normal".

Is it possible for her to have an extremely mild case, even though she has both Delta F508 mutations? I am definately not looking a gift horse in the mouth, I am so thankful for her being so healthy, it is all we could ever want for her. She was DX at 3 days old by blood test because my husband and I knew we were carriers. Otherwise I sometimes wonder if we would even know yet.

I guess I am a little worried that the carpet will fall out from under me one day, and I know that is possible, but it sure would be nice to know it is also possible that she could just have a very mild case.

Thanks!

Ratatosk · Jul 31, 2007

DS was born with a bowel obstruction, so we knew almost right away that he had CF. His CF doctor is very proactive -- had us doing CPT 3-4 times a day since DS was less than a week old. The way it was explained to us, was that CFers are born with normal lungs; however, over time because of infections, sticky mucus... the lungs will become affected. Unfortunately CF is a progressive disease and affects people differently, so it's hard to label CF as being mild.

A friend of mine's granddaughter has the same mutation, but wasn't diagnosed until she was 18 months old. She had more constipation issues, frequent infections, whereas DS tended to have more ear and sinus infections. She's cultured staph, but never pseudo. DS never staph but in the past has cultured pseudo and more recently steno. malt.

When DS was first diagnosed, I too scoured the internet to find people with the same mutations, but again -- there can be so many different factors affecting the progress of the disease.

Ratatosk · Jul 31, 2007

DS was born with a bowel obstruction, so we knew almost right away that he had CF. His CF doctor is very proactive -- had us doing CPT 3-4 times a day since DS was less than a week old. The way it was explained to us, was that CFers are born with normal lungs; however, over time because of infections, sticky mucus... the lungs will become affected. Unfortunately CF is a progressive disease and affects people differently, so it's hard to label CF as being mild.

A friend of mine's granddaughter has the same mutation, but wasn't diagnosed until she was 18 months old. She had more constipation issues, frequent infections, whereas DS tended to have more ear and sinus infections. She's cultured staph, but never pseudo. DS never staph but in the past has cultured pseudo and more recently steno. malt.

When DS was first diagnosed, I too scoured the internet to find people with the same mutations, but again -- there can be so many different factors affecting the progress of the disease.

Ratatosk · Jul 31, 2007

DS was born with a bowel obstruction, so we knew almost right away that he had CF. His CF doctor is very proactive -- had us doing CPT 3-4 times a day since DS was less than a week old. The way it was explained to us, was that CFers are born with normal lungs; however, over time because of infections, sticky mucus... the lungs will become affected. Unfortunately CF is a progressive disease and affects people differently, so it's hard to label CF as being mild.

A friend of mine's granddaughter has the same mutation, but wasn't diagnosed until she was 18 months old. She had more constipation issues, frequent infections, whereas DS tended to have more ear and sinus infections. She's cultured staph, but never pseudo. DS never staph but in the past has cultured pseudo and more recently steno. malt.

When DS was first diagnosed, I too scoured the internet to find people with the same mutations, but again -- there can be so many different factors affecting the progress of the disease.

Ratatosk · Jul 31, 2007

DS was born with a bowel obstruction, so we knew almost right away that he had CF. His CF doctor is very proactive -- had us doing CPT 3-4 times a day since DS was less than a week old. The way it was explained to us, was that CFers are born with normal lungs; however, over time because of infections, sticky mucus... the lungs will become affected. Unfortunately CF is a progressive disease and affects people differently, so it's hard to label CF as being mild.

A friend of mine's granddaughter has the same mutation, but wasn't diagnosed until she was 18 months old. She had more constipation issues, frequent infections, whereas DS tended to have more ear and sinus infections. She's cultured staph, but never pseudo. DS never staph but in the past has cultured pseudo and more recently steno. malt.

When DS was first diagnosed, I too scoured the internet to find people with the same mutations, but again -- there can be so many different factors affecting the progress of the disease.

Ratatosk · Jul 31, 2007

DS was born with a bowel obstruction, so we knew almost right away that he had CF. His CF doctor is very proactive -- had us doing CPT 3-4 times a day since DS was less than a week old. The way it was explained to us, was that CFers are born with normal lungs; however, over time because of infections, sticky mucus... the lungs will become affected. Unfortunately CF is a progressive disease and affects people differently, so it's hard to label CF as being mild.

A friend of mine's granddaughter has the same mutation, but wasn't diagnosed until she was 18 months old. She had more constipation issues, frequent infections, whereas DS tended to have more ear and sinus infections. She's cultured staph, but never pseudo. DS never staph but in the past has cultured pseudo and more recently steno. malt.

When DS was first diagnosed, I too scoured the internet to find people with the same mutations, but again -- there can be so many different factors affecting the progress of the disease.

sue35 · Jul 31, 2007

I have double Delta F508 and was not diagnosed until I was 5. I had no lung involvement until I was in 8th grade. I also only take 1-2 Creon, even now. I agree with Ratatosk that Cf is a progressive disease and will most likely get worse. I would focus more on keeping her healthy longer rather than hoping it is mild. Yes, there is a chance it could be but it would be impossible to really tell that considering how young the child is.

Have you thought about doing certain things, such as CPT just as a precautionary?

Good luck!

sue35 · Jul 31, 2007

I have double Delta F508 and was not diagnosed until I was 5. I had no lung involvement until I was in 8th grade. I also only take 1-2 Creon, even now. I agree with Ratatosk that Cf is a progressive disease and will most likely get worse. I would focus more on keeping her healthy longer rather than hoping it is mild. Yes, there is a chance it could be but it would be impossible to really tell that considering how young the child is.

Have you thought about doing certain things, such as CPT just as a precautionary?

Good luck!

sue35 · Jul 31, 2007

I have double Delta F508 and was not diagnosed until I was 5. I had no lung involvement until I was in 8th grade. I also only take 1-2 Creon, even now. I agree with Ratatosk that Cf is a progressive disease and will most likely get worse. I would focus more on keeping her healthy longer rather than hoping it is mild. Yes, there is a chance it could be but it would be impossible to really tell that considering how young the child is.

Have you thought about doing certain things, such as CPT just as a precautionary?

Good luck!

sue35 · Jul 31, 2007

I have double Delta F508 and was not diagnosed until I was 5. I had no lung involvement until I was in 8th grade. I also only take 1-2 Creon, even now. I agree with Ratatosk that Cf is a progressive disease and will most likely get worse. I would focus more on keeping her healthy longer rather than hoping it is mild. Yes, there is a chance it could be but it would be impossible to really tell that considering how young the child is.

Have you thought about doing certain things, such as CPT just as a precautionary?

Good luck!

sue35 · Jul 31, 2007

I have double Delta F508 and was not diagnosed until I was 5. I had no lung involvement until I was in 8th grade. I also only take 1-2 Creon, even now. I agree with Ratatosk that Cf is a progressive disease and will most likely get worse. I would focus more on keeping her healthy longer rather than hoping it is mild. Yes, there is a chance it could be but it would be impossible to really tell that considering how young the child is.

Have you thought about doing certain things, such as CPT just as a precautionary?

Good luck!

sue35 · Jul 31, 2007