DDF508 and Pancreatic Sufficiency

S

salubrick

New member
Hi,

We have just received the results of a faecal elastase test for our LPWCF. The result has come back as 390 which apparently is smack bang in the middle of the normal range regardless of CF. We are amazed as our daughter is homozygous D508 which seems to be pretty much always associated with Pancreatic Insufficiency. The result however does tally with her lack of GI problems and excellent weight gain. Has anyone come across this before? Is this a false dawn our can we finally count this as good news in what has been a dreadful 3 months since Charloote was diagnosed via new born screening? Any advice or opinion you can offer on this would be greatfully appreciated!
 
S

salubrick

New member
Hi,

We have just received the results of a faecal elastase test for our LPWCF. The result has come back as 390 which apparently is smack bang in the middle of the normal range regardless of CF. We are amazed as our daughter is homozygous D508 which seems to be pretty much always associated with Pancreatic Insufficiency. The result however does tally with her lack of GI problems and excellent weight gain. Has anyone come across this before? Is this a false dawn our can we finally count this as good news in what has been a dreadful 3 months since Charloote was diagnosed via new born screening? Any advice or opinion you can offer on this would be greatfully appreciated!
 
S

salubrick

New member
Hi,

We have just received the results of a faecal elastase test for our LPWCF. The result has come back as 390 which apparently is smack bang in the middle of the normal range regardless of CF. We are amazed as our daughter is homozygous D508 which seems to be pretty much always associated with Pancreatic Insufficiency. The result however does tally with her lack of GI problems and excellent weight gain. Has anyone come across this before? Is this a false dawn our can we finally count this as good news in what has been a dreadful 3 months since Charloote was diagnosed via new born screening? Any advice or opinion you can offer on this would be greatfully appreciated!
 
S

salubrick

New member
Hi,

We have just received the results of a faecal elastase test for our LPWCF. The result has come back as 390 which apparently is smack bang in the middle of the normal range regardless of CF. We are amazed as our daughter is homozygous D508 which seems to be pretty much always associated with Pancreatic Insufficiency. The result however does tally with her lack of GI problems and excellent weight gain. Has anyone come across this before? Is this a false dawn our can we finally count this as good news in what has been a dreadful 3 months since Charloote was diagnosed via new born screening? Any advice or opinion you can offer on this would be greatfully appreciated!
 
S

salubrick

New member
Hi,
<br />
<br />We have just received the results of a faecal elastase test for our LPWCF. The result has come back as 390 which apparently is smack bang in the middle of the normal range regardless of CF. We are amazed as our daughter is homozygous D508 which seems to be pretty much always associated with Pancreatic Insufficiency. The result however does tally with her lack of GI problems and excellent weight gain. Has anyone come across this before? Is this a false dawn our can we finally count this as good news in what has been a dreadful 3 months since Charloote was diagnosed via new born screening? Any advice or opinion you can offer on this would be greatfully appreciated!
<br />
 
M

mousesmom

New member
Pancreatic Insufficiency can differ from one cf'r to the next. Monique is DD508 and has severe insufficiency. Count this as a good thing because good weight gain is very important in treating lung infections. It also means less pills to worry about. PI may also change so your clinic should be doing regular tests and you should look out for if her stools ever look oily but it's nothing a few enzymes won't sort out.
Keep positive and don't worry too much.
 
M

mousesmom

New member
Pancreatic Insufficiency can differ from one cf'r to the next. Monique is DD508 and has severe insufficiency. Count this as a good thing because good weight gain is very important in treating lung infections. It also means less pills to worry about. PI may also change so your clinic should be doing regular tests and you should look out for if her stools ever look oily but it's nothing a few enzymes won't sort out.
Keep positive and don't worry too much.
 
M

mousesmom

New member
Pancreatic Insufficiency can differ from one cf'r to the next. Monique is DD508 and has severe insufficiency. Count this as a good thing because good weight gain is very important in treating lung infections. It also means less pills to worry about. PI may also change so your clinic should be doing regular tests and you should look out for if her stools ever look oily but it's nothing a few enzymes won't sort out.
Keep positive and don't worry too much.
 
M

mousesmom

New member
Pancreatic Insufficiency can differ from one cf'r to the next. Monique is DD508 and has severe insufficiency. Count this as a good thing because good weight gain is very important in treating lung infections. It also means less pills to worry about. PI may also change so your clinic should be doing regular tests and you should look out for if her stools ever look oily but it's nothing a few enzymes won't sort out.
Keep positive and don't worry too much.
 
M

mousesmom

New member
Pancreatic Insufficiency can differ from one cf'r to the next. Monique is DD508 and has severe insufficiency. Count this as a good thing because good weight gain is very important in treating lung infections. It also means less pills to worry about. PI may also change so your clinic should be doing regular tests and you should look out for if her stools ever look oily but it's nothing a few enzymes won't sort out.
<br />Keep positive and don't worry too much.
 
M

moxie1

Guest
Hi,

I'm DDF508 and I was pancreatic sufficient until my late twenties. They started me on enzymes because my protein levels were a little low. I still don't take many enzymes (maybe 6 a day) and prefer to control my diet by eating low-fat foods.

I do not have any weight issues---in fact I went to Jenny Craig in high school because I was a little chunky.
 
M

moxie1

Guest
Hi,

I'm DDF508 and I was pancreatic sufficient until my late twenties. They started me on enzymes because my protein levels were a little low. I still don't take many enzymes (maybe 6 a day) and prefer to control my diet by eating low-fat foods.

I do not have any weight issues---in fact I went to Jenny Craig in high school because I was a little chunky.
 
M

moxie1

Guest
Hi,

I'm DDF508 and I was pancreatic sufficient until my late twenties. They started me on enzymes because my protein levels were a little low. I still don't take many enzymes (maybe 6 a day) and prefer to control my diet by eating low-fat foods.

I do not have any weight issues---in fact I went to Jenny Craig in high school because I was a little chunky.
 
M

moxie1

Guest
Hi,

I'm DDF508 and I was pancreatic sufficient until my late twenties. They started me on enzymes because my protein levels were a little low. I still don't take many enzymes (maybe 6 a day) and prefer to control my diet by eating low-fat foods.

I do not have any weight issues---in fact I went to Jenny Craig in high school because I was a little chunky.
 
M

moxie1

Guest
Hi,
<br />
<br />I'm DDF508 and I was pancreatic sufficient until my late twenties. They started me on enzymes because my protein levels were a little low. I still don't take many enzymes (maybe 6 a day) and prefer to control my diet by eating low-fat foods.
<br />
<br />I do not have any weight issues---in fact I went to Jenny Craig in high school because I was a little chunky.
<br />
<br />
 
S

salubrick

New member
Joanne,

I agree its good news that charlotte is PS at this stage but we have had some really low points since her diagnosis it just seems hard to finally accept a bit of good news for a change - silly I know! Every day she remains asympotmatic just reinforces a little bit that she is actually doing OK and getting stronger.

Becki,

Wow that really is excellent - its so uplifting to hear from other PWCF who are DDF508ers and having few/less severe GI issues. If you don't mind me asking how has being PS for most of your life impacted on the pulmonary issues associated with CF/where are your PFTs at the moment?

I am constantly amazed by the strength of will and determnination of the people who input to this site and I wish you/your loved ones stay well and happy.
 
S

salubrick

New member
Joanne,

I agree its good news that charlotte is PS at this stage but we have had some really low points since her diagnosis it just seems hard to finally accept a bit of good news for a change - silly I know! Every day she remains asympotmatic just reinforces a little bit that she is actually doing OK and getting stronger.

Becki,

Wow that really is excellent - its so uplifting to hear from other PWCF who are DDF508ers and having few/less severe GI issues. If you don't mind me asking how has being PS for most of your life impacted on the pulmonary issues associated with CF/where are your PFTs at the moment?

I am constantly amazed by the strength of will and determnination of the people who input to this site and I wish you/your loved ones stay well and happy.
 
S

salubrick

New member
Joanne,

I agree its good news that charlotte is PS at this stage but we have had some really low points since her diagnosis it just seems hard to finally accept a bit of good news for a change - silly I know! Every day she remains asympotmatic just reinforces a little bit that she is actually doing OK and getting stronger.

Becki,

Wow that really is excellent - its so uplifting to hear from other PWCF who are DDF508ers and having few/less severe GI issues. If you don't mind me asking how has being PS for most of your life impacted on the pulmonary issues associated with CF/where are your PFTs at the moment?

I am constantly amazed by the strength of will and determnination of the people who input to this site and I wish you/your loved ones stay well and happy.
 
S

salubrick

New member
Joanne,

I agree its good news that charlotte is PS at this stage but we have had some really low points since her diagnosis it just seems hard to finally accept a bit of good news for a change - silly I know! Every day she remains asympotmatic just reinforces a little bit that she is actually doing OK and getting stronger.

Becki,

Wow that really is excellent - its so uplifting to hear from other PWCF who are DDF508ers and having few/less severe GI issues. If you don't mind me asking how has being PS for most of your life impacted on the pulmonary issues associated with CF/where are your PFTs at the moment?

I am constantly amazed by the strength of will and determnination of the people who input to this site and I wish you/your loved ones stay well and happy.
 
S

salubrick

New member
Joanne,
<br />
<br />I agree its good news that charlotte is PS at this stage but we have had some really low points since her diagnosis it just seems hard to finally accept a bit of good news for a change - silly I know! Every day she remains asympotmatic just reinforces a little bit that she is actually doing OK and getting stronger.
<br />
<br />Becki,
<br />
<br />Wow that really is excellent - its so uplifting to hear from other PWCF who are DDF508ers and having few/less severe GI issues. If you don't mind me asking how has being PS for most of your life impacted on the pulmonary issues associated with CF/where are your PFTs at the moment?
<br />
<br />I am constantly amazed by the strength of will and determnination of the people who input to this site and I wish you/your loved ones stay well and happy.
 
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