Pancrease sufficient vs. not....?

[LMK]

Hi Everyone,

As my family settles in with the diagnosis of our two kids, ages 11 & 9, I am curious about so many things. Mostly I am wanting to learn more about the course of the disease for poeple who are Pancreatic Sufficient vs. Not. For us, our kids seem to be PS, but their lungs seem to already have more damage than other CF patients the same age. Any info would be really appreciated.


Thanks,

LMK

 

[LMK]

Hi Everyone,

As my family settles in with the diagnosis of our two kids, ages 11 & 9, I am curious about so many things. Mostly I am wanting to learn more about the course of the disease for poeple who are Pancreatic Sufficient vs. Not. For us, our kids seem to be PS, but their lungs seem to already have more damage than other CF patients the same age. Any info would be really appreciated.


Thanks,

LMK

 

[LMK]

Hi Everyone,

As my family settles in with the diagnosis of our two kids, ages 11 & 9, I am curious about so many things. Mostly I am wanting to learn more about the course of the disease for poeple who are Pancreatic Sufficient vs. Not. For us, our kids seem to be PS, but their lungs seem to already have more damage than other CF patients the same age. Any info would be really appreciated.


Thanks,

LMK

 

[LMK]

Hi Everyone,

As my family settles in with the diagnosis of our two kids, ages 11 & 9, I am curious about so many things. Mostly I am wanting to learn more about the course of the disease for poeple who are Pancreatic Sufficient vs. Not. For us, our kids seem to be PS, but their lungs seem to already have more damage than other CF patients the same age. Any info would be really appreciated.


Thanks,

LMK

 

[LMK]

Hi Everyone,

As my family settles in with the diagnosis of our two kids, ages 11 & 9, I am curious about so many things. Mostly I am wanting to learn more about the course of the disease for poeple who are Pancreatic Sufficient vs. Not. For us, our kids seem to be PS, but their lungs seem to already have more damage than other CF patients the same age. Any info would be really appreciated.


Thanks,

LMK

 

[janddburke]

my Jess is PS and right now she only has mild respriatory symptoms, but we have had a few scares.
I'm not sure you can generalize by wether or not your child is PS or not. or even the mutations they have.
the best we can do sometimes is follow the dr's instructions and keep the bugs at bay.

 

[janddburke]

my Jess is PS and right now she only has mild respriatory symptoms, but we have had a few scares.
I'm not sure you can generalize by wether or not your child is PS or not. or even the mutations they have.
the best we can do sometimes is follow the dr's instructions and keep the bugs at bay.

 

[janddburke]

my Jess is PS and right now she only has mild respriatory symptoms, but we have had a few scares.
I'm not sure you can generalize by wether or not your child is PS or not. or even the mutations they have.
the best we can do sometimes is follow the dr's instructions and keep the bugs at bay.

 

[janddburke]

my Jess is PS and right now she only has mild respriatory symptoms, but we have had a few scares.
I'm not sure you can generalize by wether or not your child is PS or not. or even the mutations they have.
the best we can do sometimes is follow the dr's instructions and keep the bugs at bay.

 

[janddburke]

my Jess is PS and right now she only has mild respriatory symptoms, but we have had a few scares.
I'm not sure you can generalize by wether or not your child is PS or not. or even the mutations they have.
the best we can do sometimes is follow the dr's instructions and keep the bugs at bay.

 

[alegris]

I was pancreatic sufficient until I was about 10 (diagnosed at 8). Now I take enzymes, but don't need too many and it's usually not too disasterous if I miss them with a meal. I don't take any with snacks. My mutations are DF508 and 3396delC. My lung problems were non-existant until I started culturing Pseudomonas when I was 18. Then I had a moderate decline in lung function but have since evened out to about 60 - 65% FEV1. It's always interesting when you find someone with CF but no digestive issues or the other way around (digestive issues with no lung problems) - I guess you never know what you're going to get with this illness! Adrienne - 25 w/CF

 

[alegris]

I was pancreatic sufficient until I was about 10 (diagnosed at 8). Now I take enzymes, but don't need too many and it's usually not too disasterous if I miss them with a meal. I don't take any with snacks. My mutations are DF508 and 3396delC. My lung problems were non-existant until I started culturing Pseudomonas when I was 18. Then I had a moderate decline in lung function but have since evened out to about 60 - 65% FEV1. It's always interesting when you find someone with CF but no digestive issues or the other way around (digestive issues with no lung problems) - I guess you never know what you're going to get with this illness! Adrienne - 25 w/CF

 

[alegris]

I was pancreatic sufficient until I was about 10 (diagnosed at 8). Now I take enzymes, but don't need too many and it's usually not too disasterous if I miss them with a meal. I don't take any with snacks. My mutations are DF508 and 3396delC. My lung problems were non-existant until I started culturing Pseudomonas when I was 18. Then I had a moderate decline in lung function but have since evened out to about 60 - 65% FEV1. It's always interesting when you find someone with CF but no digestive issues or the other way around (digestive issues with no lung problems) - I guess you never know what you're going to get with this illness! Adrienne - 25 w/CF

 

[alegris]

I was pancreatic sufficient until I was about 10 (diagnosed at 8). Now I take enzymes, but don't need too many and it's usually not too disasterous if I miss them with a meal. I don't take any with snacks. My mutations are DF508 and 3396delC. My lung problems were non-existant until I started culturing Pseudomonas when I was 18. Then I had a moderate decline in lung function but have since evened out to about 60 - 65% FEV1. It's always interesting when you find someone with CF but no digestive issues or the other way around (digestive issues with no lung problems) - I guess you never know what you're going to get with this illness! Adrienne - 25 w/CF

 

[alegris]

I was pancreatic sufficient until I was about 10 (diagnosed at 8). Now I take enzymes, but don't need too many and it's usually not too disasterous if I miss them with a meal. I don't take any with snacks. My mutations are DF508 and 3396delC. My lung problems were non-existant until I started culturing Pseudomonas when I was 18. Then I had a moderate decline in lung function but have since evened out to about 60 - 65% FEV1. It's always interesting when you find someone with CF but no digestive issues or the other way around (digestive issues with no lung problems) - I guess you never know what you're going to get with this illness! Adrienne - 25 w/CF

 

[mom2lillian]

It is dangerous to make generalizations in this illness since both the array of symptoms and the progression is on such a wide continuum.

That being said I think that those whom are pancreatic sufficient have an easier time in that wiht any disease good nutrition is vital so being pancreatic sufficient gives you an edge, not syaing that you cant get good nutrition if you are not PS -- its just one more hurdle.

I am sorry for your diagnosis in both your hcildren, I am sure you will find alot of support here

 

[mom2lillian]

It is dangerous to make generalizations in this illness since both the array of symptoms and the progression is on such a wide continuum.

That being said I think that those whom are pancreatic sufficient have an easier time in that wiht any disease good nutrition is vital so being pancreatic sufficient gives you an edge, not syaing that you cant get good nutrition if you are not PS -- its just one more hurdle.

I am sorry for your diagnosis in both your hcildren, I am sure you will find alot of support here

 

[mom2lillian]

It is dangerous to make generalizations in this illness since both the array of symptoms and the progression is on such a wide continuum.

That being said I think that those whom are pancreatic sufficient have an easier time in that wiht any disease good nutrition is vital so being pancreatic sufficient gives you an edge, not syaing that you cant get good nutrition if you are not PS -- its just one more hurdle.

I am sorry for your diagnosis in both your hcildren, I am sure you will find alot of support here

 

[mom2lillian]

It is dangerous to make generalizations in this illness since both the array of symptoms and the progression is on such a wide continuum.

That being said I think that those whom are pancreatic sufficient have an easier time in that wiht any disease good nutrition is vital so being pancreatic sufficient gives you an edge, not syaing that you cant get good nutrition if you are not PS -- its just one more hurdle.

I am sorry for your diagnosis in both your hcildren, I am sure you will find alot of support here

 

[mom2lillian]

It is dangerous to make generalizations in this illness since both the array of symptoms and the progression is on such a wide continuum.

That being said I think that those whom are pancreatic sufficient have an easier time in that wiht any disease good nutrition is vital so being pancreatic sufficient gives you an edge, not syaing that you cant get good nutrition if you are not PS -- its just one more hurdle.

I am sorry for your diagnosis in both your hcildren, I am sure you will find alot of support here