son losing pancreatic sufficiency?

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mommy2diego

New member
my 4 year old has been having stomach issues for the last month and a half. constant stomachaches....etc. weird appetite...back and forth on wanting to eat like crazy, not wanting to eat at all. His last stool elastase was 270 a year ago. He's had no drop in weight but hasn't grown or gained any weight since the last clinic visit. The doctors want to run another test to see if his numbers have dropped. (i dont see all of his stools, i have asked him not to flush and i have seen a few that have looked orangeish and couple that floated) so i'm ok with retesting. i just want to get to the bottom of his stomach issues...

just wondering if anyone lost sufficiency over time? I know like 80% are insufficient...just wondering how many are out there that were sufficient through the first years of their lives and then lost it......and was it hard to adjust to?
 
M

mommy2diego

New member
my 4 year old has been having stomach issues for the last month and a half. constant stomachaches....etc. weird appetite...back and forth on wanting to eat like crazy, not wanting to eat at all. His last stool elastase was 270 a year ago. He's had no drop in weight but hasn't grown or gained any weight since the last clinic visit. The doctors want to run another test to see if his numbers have dropped. (i dont see all of his stools, i have asked him not to flush and i have seen a few that have looked orangeish and couple that floated) so i'm ok with retesting. i just want to get to the bottom of his stomach issues...

just wondering if anyone lost sufficiency over time? I know like 80% are insufficient...just wondering how many are out there that were sufficient through the first years of their lives and then lost it......and was it hard to adjust to?
 
M

mommy2diego

New member
my 4 year old has been having stomach issues for the last month and a half. constant stomachaches....etc. weird appetite...back and forth on wanting to eat like crazy, not wanting to eat at all. His last stool elastase was 270 a year ago. He's had no drop in weight but hasn't grown or gained any weight since the last clinic visit. The doctors want to run another test to see if his numbers have dropped. (i dont see all of his stools, i have asked him not to flush and i have seen a few that have looked orangeish and couple that floated) so i'm ok with retesting. i just want to get to the bottom of his stomach issues...

just wondering if anyone lost sufficiency over time? I know like 80% are insufficient...just wondering how many are out there that were sufficient through the first years of their lives and then lost it......and was it hard to adjust to?
 
M

mommy2diego

New member
my 4 year old has been having stomach issues for the last month and a half. constant stomachaches....etc. weird appetite...back and forth on wanting to eat like crazy, not wanting to eat at all. His last stool elastase was 270 a year ago. He's had no drop in weight but hasn't grown or gained any weight since the last clinic visit. The doctors want to run another test to see if his numbers have dropped. (i dont see all of his stools, i have asked him not to flush and i have seen a few that have looked orangeish and couple that floated) so i'm ok with retesting. i just want to get to the bottom of his stomach issues...

just wondering if anyone lost sufficiency over time? I know like 80% are insufficient...just wondering how many are out there that were sufficient through the first years of their lives and then lost it......and was it hard to adjust to?
 
M

mommy2diego

New member
my 4 year old has been having stomach issues for the last month and a half. constant stomachaches....etc. weird appetite...back and forth on wanting to eat like crazy, not wanting to eat at all. His last stool elastase was 270 a year ago. He's had no drop in weight but hasn't grown or gained any weight since the last clinic visit. The doctors want to run another test to see if his numbers have dropped. (i dont see all of his stools, i have asked him not to flush and i have seen a few that have looked orangeish and couple that floated) so i'm ok with retesting. i just want to get to the bottom of his stomach issues...
<br />
<br />just wondering if anyone lost sufficiency over time? I know like 80% are insufficient...just wondering how many are out there that were sufficient through the first years of their lives and then lost it......and was it hard to adjust to?
 
D

dasjsmum

New member
Hi
My oldest son probably had pancreatic sufficiency for four months, then started losing weight before he was diagnosed. My other two cfer's were placed straight onto enzymes from about five weeks I guess.

I see it as almost inevitable that cfer's will be on enzymes, it's the least important issue from my perspective, and fairly easily treated for most. The enzyme dosing is a bit of an issue I guess, but once they master swallowing pills it's not an issue.

Hope that helps <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
D

dasjsmum

New member
Hi
My oldest son probably had pancreatic sufficiency for four months, then started losing weight before he was diagnosed. My other two cfer's were placed straight onto enzymes from about five weeks I guess.

I see it as almost inevitable that cfer's will be on enzymes, it's the least important issue from my perspective, and fairly easily treated for most. The enzyme dosing is a bit of an issue I guess, but once they master swallowing pills it's not an issue.

Hope that helps <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
D

dasjsmum

New member
Hi
My oldest son probably had pancreatic sufficiency for four months, then started losing weight before he was diagnosed. My other two cfer's were placed straight onto enzymes from about five weeks I guess.

I see it as almost inevitable that cfer's will be on enzymes, it's the least important issue from my perspective, and fairly easily treated for most. The enzyme dosing is a bit of an issue I guess, but once they master swallowing pills it's not an issue.

Hope that helps <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
D

dasjsmum

New member
Hi
My oldest son probably had pancreatic sufficiency for four months, then started losing weight before he was diagnosed. My other two cfer's were placed straight onto enzymes from about five weeks I guess.

I see it as almost inevitable that cfer's will be on enzymes, it's the least important issue from my perspective, and fairly easily treated for most. The enzyme dosing is a bit of an issue I guess, but once they master swallowing pills it's not an issue.

Hope that helps <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
D

dasjsmum

New member
Hi
<br />My oldest son probably had pancreatic sufficiency for four months, then started losing weight before he was diagnosed. My other two cfer's were placed straight onto enzymes from about five weeks I guess.
<br />
<br />I see it as almost inevitable that cfer's will be on enzymes, it's the least important issue from my perspective, and fairly easily treated for most. The enzyme dosing is a bit of an issue I guess, but once they master swallowing pills it's not an issue.
<br />
<br />Hope that helps <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

Mommafirst

Guest
Hi Andrea. I'll be curious to hear how this goes for your son, because we are hanging out in the same position just a few months behind you.

My daughter was considered sufficient with a score of 250. That isn't really normal (normal is 500) but it isn't considered insufficient (under 200) either. We've been struggling with weight gain issues forever with her and now with a feeding tube are finally seeing a jump in weight. We've considered retesting her stools, but since she is already on enzymes there isn't really a point of knowing. Our docs said they suspect she will lose sufficiency at some point, that it won't jump up and down, but it is likely for the stool elastase numbers to continue to fall over time.
 
M

Mommafirst

Guest
Hi Andrea. I'll be curious to hear how this goes for your son, because we are hanging out in the same position just a few months behind you.

My daughter was considered sufficient with a score of 250. That isn't really normal (normal is 500) but it isn't considered insufficient (under 200) either. We've been struggling with weight gain issues forever with her and now with a feeding tube are finally seeing a jump in weight. We've considered retesting her stools, but since she is already on enzymes there isn't really a point of knowing. Our docs said they suspect she will lose sufficiency at some point, that it won't jump up and down, but it is likely for the stool elastase numbers to continue to fall over time.
 
M

Mommafirst

Guest
Hi Andrea. I'll be curious to hear how this goes for your son, because we are hanging out in the same position just a few months behind you.

My daughter was considered sufficient with a score of 250. That isn't really normal (normal is 500) but it isn't considered insufficient (under 200) either. We've been struggling with weight gain issues forever with her and now with a feeding tube are finally seeing a jump in weight. We've considered retesting her stools, but since she is already on enzymes there isn't really a point of knowing. Our docs said they suspect she will lose sufficiency at some point, that it won't jump up and down, but it is likely for the stool elastase numbers to continue to fall over time.
 
M

Mommafirst

Guest
Hi Andrea. I'll be curious to hear how this goes for your son, because we are hanging out in the same position just a few months behind you.

My daughter was considered sufficient with a score of 250. That isn't really normal (normal is 500) but it isn't considered insufficient (under 200) either. We've been struggling with weight gain issues forever with her and now with a feeding tube are finally seeing a jump in weight. We've considered retesting her stools, but since she is already on enzymes there isn't really a point of knowing. Our docs said they suspect she will lose sufficiency at some point, that it won't jump up and down, but it is likely for the stool elastase numbers to continue to fall over time.
 
M

Mommafirst

Guest
Hi Andrea. I'll be curious to hear how this goes for your son, because we are hanging out in the same position just a few months behind you.
<br />
<br />My daughter was considered sufficient with a score of 250. That isn't really normal (normal is 500) but it isn't considered insufficient (under 200) either. We've been struggling with weight gain issues forever with her and now with a feeding tube are finally seeing a jump in weight. We've considered retesting her stools, but since she is already on enzymes there isn't really a point of knowing. Our docs said they suspect she will lose sufficiency at some point, that it won't jump up and down, but it is likely for the stool elastase numbers to continue to fall over time.
 
S

saveferris2009

New member
CF is characterized by a great deal of plugging and scaring of the pancreas.

some CFer's need more enzymes over time - others get CFRD (also from scaring of the pancreas).

so going from PS to PI is absolutely feasible. This is a progressive disease, after all - things definitely don't stay constant.
 
S

saveferris2009

New member
CF is characterized by a great deal of plugging and scaring of the pancreas.

some CFer's need more enzymes over time - others get CFRD (also from scaring of the pancreas).

so going from PS to PI is absolutely feasible. This is a progressive disease, after all - things definitely don't stay constant.
 
S

saveferris2009

New member
CF is characterized by a great deal of plugging and scaring of the pancreas.

some CFer's need more enzymes over time - others get CFRD (also from scaring of the pancreas).

so going from PS to PI is absolutely feasible. This is a progressive disease, after all - things definitely don't stay constant.
 
S

saveferris2009

New member
CF is characterized by a great deal of plugging and scaring of the pancreas.

some CFer's need more enzymes over time - others get CFRD (also from scaring of the pancreas).

so going from PS to PI is absolutely feasible. This is a progressive disease, after all - things definitely don't stay constant.
 
S

saveferris2009

New member
CF is characterized by a great deal of plugging and scaring of the pancreas.
<br />
<br />some CFer's need more enzymes over time - others get CFRD (also from scaring of the pancreas).
<br />
<br />so going from PS to PI is absolutely feasible. This is a progressive disease, after all - things definitely don't stay constant.
 
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