Pancreatic sufficient -- or not??? Help! Confused!

SarahProcter · Mar 8, 2009

Hello -

My daughter (almost 5 months old) was deemed pancreatic sufficient at 2 months of age, due to a fecal elastase test with a value of 227, against a scale where <100 indicates severe insufficiency, and 100-200 ranges from moderate to mild insufficiency, and >200 is "normal".

They've gotten worried that she isn't gaining weight fast enough (she is 15lbs and 26" tall - around 50% for weight and off the charts tall, above the 95% curve for height). So they want us to start using enzymes. This confuses me.

(1) Do some babies start out pancreatic sufficient and then become insufficient?

(2) Would having a "low normal" amount of pancreatic enzymes warrant supplementation?

(3) If she's malnourished, why is she so darn tall?

(4) Her fat soluble vitamin levels are all fine (they tested blood levels of A, E, and D, and all were good). Wouldn't this indicate that she's digesting fats well enough?

(5) Her poop looks like baby poop to me - yellow, thick-ish, slightly seedy. Doesn't smell bad. No sheen of oil, no drops of oil, nothing that looks like fat to me -- what would it look like if there was fat in her diaper? Would I be able to tell? This is my first baby, I don't have extensive baby poop experience!

We're redoing the fecal elastase test because I was nettled at the idea of supplementing enzymes if her enzyme levels were normal.

Am I irresponsible to be resisting supplenting enzymes? I fear the impact on our breastfeeding relationship, especially for nighttime feeds which are done in the dark with her most of the way asleep - adding enzymes to those feeds seems like a great way to mess up her sleep! The doctor was not friendly towards the idea of me adding enzymes only to daytime feeds.

They also want me to give her a bottle a day of expressed breast milk fortified with powdered formula - but my baby won't take a bottle <img src="i/expressions/face-icon-small-sad.gif" border="0"> I'm feeling a little desperate here.

Any thoughts? I am going to decide soon about the enzymes, we should have the retest results back in a few days. Any input would be MOST appreciated. Thanks!

SarahProcter · Mar 8, 2009

Hello -

My daughter (almost 5 months old) was deemed pancreatic sufficient at 2 months of age, due to a fecal elastase test with a value of 227, against a scale where <100 indicates severe insufficiency, and 100-200 ranges from moderate to mild insufficiency, and >200 is "normal".

They've gotten worried that she isn't gaining weight fast enough (she is 15lbs and 26" tall - around 50% for weight and off the charts tall, above the 95% curve for height). So they want us to start using enzymes. This confuses me.

(1) Do some babies start out pancreatic sufficient and then become insufficient?

(2) Would having a "low normal" amount of pancreatic enzymes warrant supplementation?

(3) If she's malnourished, why is she so darn tall?

(4) Her fat soluble vitamin levels are all fine (they tested blood levels of A, E, and D, and all were good). Wouldn't this indicate that she's digesting fats well enough?

(5) Her poop looks like baby poop to me - yellow, thick-ish, slightly seedy. Doesn't smell bad. No sheen of oil, no drops of oil, nothing that looks like fat to me -- what would it look like if there was fat in her diaper? Would I be able to tell? This is my first baby, I don't have extensive baby poop experience!

We're redoing the fecal elastase test because I was nettled at the idea of supplementing enzymes if her enzyme levels were normal.

Am I irresponsible to be resisting supplenting enzymes? I fear the impact on our breastfeeding relationship, especially for nighttime feeds which are done in the dark with her most of the way asleep - adding enzymes to those feeds seems like a great way to mess up her sleep! The doctor was not friendly towards the idea of me adding enzymes only to daytime feeds.

They also want me to give her a bottle a day of expressed breast milk fortified with powdered formula - but my baby won't take a bottle <img src="i/expressions/face-icon-small-sad.gif" border="0"> I'm feeling a little desperate here.

Any thoughts? I am going to decide soon about the enzymes, we should have the retest results back in a few days. Any input would be MOST appreciated. Thanks!

SarahProcter · Mar 8, 2009

Hello -

My daughter (almost 5 months old) was deemed pancreatic sufficient at 2 months of age, due to a fecal elastase test with a value of 227, against a scale where <100 indicates severe insufficiency, and 100-200 ranges from moderate to mild insufficiency, and >200 is "normal".

They've gotten worried that she isn't gaining weight fast enough (she is 15lbs and 26" tall - around 50% for weight and off the charts tall, above the 95% curve for height). So they want us to start using enzymes. This confuses me.

(1) Do some babies start out pancreatic sufficient and then become insufficient?

(2) Would having a "low normal" amount of pancreatic enzymes warrant supplementation?

(3) If she's malnourished, why is she so darn tall?

(4) Her fat soluble vitamin levels are all fine (they tested blood levels of A, E, and D, and all were good). Wouldn't this indicate that she's digesting fats well enough?

(5) Her poop looks like baby poop to me - yellow, thick-ish, slightly seedy. Doesn't smell bad. No sheen of oil, no drops of oil, nothing that looks like fat to me -- what would it look like if there was fat in her diaper? Would I be able to tell? This is my first baby, I don't have extensive baby poop experience!

We're redoing the fecal elastase test because I was nettled at the idea of supplementing enzymes if her enzyme levels were normal.

Am I irresponsible to be resisting supplenting enzymes? I fear the impact on our breastfeeding relationship, especially for nighttime feeds which are done in the dark with her most of the way asleep - adding enzymes to those feeds seems like a great way to mess up her sleep! The doctor was not friendly towards the idea of me adding enzymes only to daytime feeds.

They also want me to give her a bottle a day of expressed breast milk fortified with powdered formula - but my baby won't take a bottle <img src="i/expressions/face-icon-small-sad.gif" border="0"> I'm feeling a little desperate here.

Any thoughts? I am going to decide soon about the enzymes, we should have the retest results back in a few days. Any input would be MOST appreciated. Thanks!

SarahProcter · Mar 8, 2009

Hello -

My daughter (almost 5 months old) was deemed pancreatic sufficient at 2 months of age, due to a fecal elastase test with a value of 227, against a scale where <100 indicates severe insufficiency, and 100-200 ranges from moderate to mild insufficiency, and >200 is "normal".

They've gotten worried that she isn't gaining weight fast enough (she is 15lbs and 26" tall - around 50% for weight and off the charts tall, above the 95% curve for height). So they want us to start using enzymes. This confuses me.

(1) Do some babies start out pancreatic sufficient and then become insufficient?

(2) Would having a "low normal" amount of pancreatic enzymes warrant supplementation?

(3) If she's malnourished, why is she so darn tall?

(4) Her fat soluble vitamin levels are all fine (they tested blood levels of A, E, and D, and all were good). Wouldn't this indicate that she's digesting fats well enough?

(5) Her poop looks like baby poop to me - yellow, thick-ish, slightly seedy. Doesn't smell bad. No sheen of oil, no drops of oil, nothing that looks like fat to me -- what would it look like if there was fat in her diaper? Would I be able to tell? This is my first baby, I don't have extensive baby poop experience!

We're redoing the fecal elastase test because I was nettled at the idea of supplementing enzymes if her enzyme levels were normal.

Am I irresponsible to be resisting supplenting enzymes? I fear the impact on our breastfeeding relationship, especially for nighttime feeds which are done in the dark with her most of the way asleep - adding enzymes to those feeds seems like a great way to mess up her sleep! The doctor was not friendly towards the idea of me adding enzymes only to daytime feeds.

They also want me to give her a bottle a day of expressed breast milk fortified with powdered formula - but my baby won't take a bottle <img src="i/expressions/face-icon-small-sad.gif" border="0"> I'm feeling a little desperate here.

Any thoughts? I am going to decide soon about the enzymes, we should have the retest results back in a few days. Any input would be MOST appreciated. Thanks!

SarahProcter · Mar 8, 2009

Hello -
 
 My daughter (almost 5 months old) was deemed pancreatic sufficient at 2 months of age, due to a fecal elastase test with a value of 227, against a scale where <100 indicates severe insufficiency, and 100-200 ranges from moderate to mild insufficiency, and >200 is "normal".
 
 They've gotten worried that she isn't gaining weight fast enough (she is 15lbs and 26" tall - around 50% for weight and off the charts tall, above the 95% curve for height). So they want us to start using enzymes. This confuses me.
 
 (1) Do some babies start out pancreatic sufficient and then become insufficient?
 
 (2) Would having a "low normal" amount of pancreatic enzymes warrant supplementation?
 
 (3) If she's malnourished, why is she so darn tall?
 
 (4) Her fat soluble vitamin levels are all fine (they tested blood levels of A, E, and D, and all were good). Wouldn't this indicate that she's digesting fats well enough?
 
 (5) Her poop looks like baby poop to me - yellow, thick-ish, slightly seedy. Doesn't smell bad. No sheen of oil, no drops of oil, nothing that looks like fat to me -- what would it look like if there was fat in her diaper? Would I be able to tell? This is my first baby, I don't have extensive baby poop experience!
 
 We're redoing the fecal elastase test because I was nettled at the idea of supplementing enzymes if her enzyme levels were normal.
 
 Am I irresponsible to be resisting supplenting enzymes? I fear the impact on our breastfeeding relationship, especially for nighttime feeds which are done in the dark with her most of the way asleep - adding enzymes to those feeds seems like a great way to mess up her sleep! The doctor was not friendly towards the idea of me adding enzymes only to daytime feeds.
 
 They also want me to give her a bottle a day of expressed breast milk fortified with powdered formula - but my baby won't take a bottle <img src="i/expressions/face-icon-small-sad.gif" border="0"> I'm feeling a little desperate here.
 
 Any thoughts? I am going to decide soon about the enzymes, we should have the retest results back in a few days. Any input would be MOST appreciated. Thanks!

mommy2diego · Mar 8, 2009

hi, sorry for your frustration. My kids are pancreatic sufficient but i do know that about 85% of Cf'ers are pancreatic insufficient. A big percentage of those even born pancreatic sufficient, lose suffciency within the first year of life. There are some mutations that tend to be more associated with insufficiency. Do you know your babies mutations?

Also, although my kids are sufficient now, my doctor says that there are no guarantees that they will stay that way. She says she's seen patients lose their sufficiency at old ages too. This disease presents itself differently in everbody.

It's a good idea to retest the stool periodically ... i know that some are treated with enzymes if the doctor feels it would be beneficial to growth/nutritional status, if they are in that borderline area (being close number wise to insuffciency).

As far as what the stool looks like if you need enzymes i haven't seen it. I only know what to look for as you have listed. I'm sure there are lots of parents and adult cf'ers that can give detailed descriptions of that. :0)

But I just wanted to let you know, that YES it is possible to be born pancreatic suffcient and then become pancreatic insuffcient and need enzymes and other supplements.

take care, and hope some other posters will help you out more with this one.

mommy2diego · Mar 8, 2009

hi, sorry for your frustration. My kids are pancreatic sufficient but i do know that about 85% of Cf'ers are pancreatic insufficient. A big percentage of those even born pancreatic sufficient, lose suffciency within the first year of life. There are some mutations that tend to be more associated with insufficiency. Do you know your babies mutations?

Also, although my kids are sufficient now, my doctor says that there are no guarantees that they will stay that way. She says she's seen patients lose their sufficiency at old ages too. This disease presents itself differently in everbody.

It's a good idea to retest the stool periodically ... i know that some are treated with enzymes if the doctor feels it would be beneficial to growth/nutritional status, if they are in that borderline area (being close number wise to insuffciency).

As far as what the stool looks like if you need enzymes i haven't seen it. I only know what to look for as you have listed. I'm sure there are lots of parents and adult cf'ers that can give detailed descriptions of that. :0)

But I just wanted to let you know, that YES it is possible to be born pancreatic suffcient and then become pancreatic insuffcient and need enzymes and other supplements.

take care, and hope some other posters will help you out more with this one.

mommy2diego · Mar 8, 2009

hi, sorry for your frustration. My kids are pancreatic sufficient but i do know that about 85% of Cf'ers are pancreatic insufficient. A big percentage of those even born pancreatic sufficient, lose suffciency within the first year of life. There are some mutations that tend to be more associated with insufficiency. Do you know your babies mutations?

Also, although my kids are sufficient now, my doctor says that there are no guarantees that they will stay that way. She says she's seen patients lose their sufficiency at old ages too. This disease presents itself differently in everbody.

It's a good idea to retest the stool periodically ... i know that some are treated with enzymes if the doctor feels it would be beneficial to growth/nutritional status, if they are in that borderline area (being close number wise to insuffciency).

As far as what the stool looks like if you need enzymes i haven't seen it. I only know what to look for as you have listed. I'm sure there are lots of parents and adult cf'ers that can give detailed descriptions of that. :0)

But I just wanted to let you know, that YES it is possible to be born pancreatic suffcient and then become pancreatic insuffcient and need enzymes and other supplements.

take care, and hope some other posters will help you out more with this one.

mommy2diego · Mar 8, 2009

hi, sorry for your frustration. My kids are pancreatic sufficient but i do know that about 85% of Cf'ers are pancreatic insufficient. A big percentage of those even born pancreatic sufficient, lose suffciency within the first year of life. There are some mutations that tend to be more associated with insufficiency. Do you know your babies mutations?

Also, although my kids are sufficient now, my doctor says that there are no guarantees that they will stay that way. She says she's seen patients lose their sufficiency at old ages too. This disease presents itself differently in everbody.

It's a good idea to retest the stool periodically ... i know that some are treated with enzymes if the doctor feels it would be beneficial to growth/nutritional status, if they are in that borderline area (being close number wise to insuffciency).

As far as what the stool looks like if you need enzymes i haven't seen it. I only know what to look for as you have listed. I'm sure there are lots of parents and adult cf'ers that can give detailed descriptions of that. :0)

But I just wanted to let you know, that YES it is possible to be born pancreatic suffcient and then become pancreatic insuffcient and need enzymes and other supplements.

take care, and hope some other posters will help you out more with this one.

mommy2diego · Mar 8, 2009

hi, sorry for your frustration. My kids are pancreatic sufficient but i do know that about 85% of Cf'ers are pancreatic insufficient. A big percentage of those even born pancreatic sufficient, lose suffciency within the first year of life. There are some mutations that tend to be more associated with insufficiency. Do you know your babies mutations?
 
 Also, although my kids are sufficient now, my doctor says that there are no guarantees that they will stay that way. She says she's seen patients lose their sufficiency at old ages too. This disease presents itself differently in everbody.
 
 It's a good idea to retest the stool periodically ... i know that some are treated with enzymes if the doctor feels it would be beneficial to growth/nutritional status, if they are in that borderline area (being close number wise to insuffciency).
 
 As far as what the stool looks like if you need enzymes i haven't seen it. I only know what to look for as you have listed. I'm sure there are lots of parents and adult cf'ers that can give detailed descriptions of that. :0)
 
 But I just wanted to let you know, that YES it is possible to be born pancreatic suffcient and then become pancreatic insuffcient and need enzymes and other supplements.
 
 take care, and hope some other posters will help you out more with this one.

amyr · Mar 8, 2009

That # is considered borderline insufficent according to my GI. We went through the same thing. My son who was malnourished had an elastase # of 356. Originally I was told by the covering Pulmonologist no enzymes were needed. Thankfully his Dr. thought he needed them and started him on them. Here we are 11 months later and my son who was NEVER on the charts has gained 20lbs!! We have since been to our GI who works with the CF population who has said his # of 356 is borderline insufficent and needs enzymes. He also explained that you cant base it on one elastase test and if there is questions.. You need several and the best way to determine just how much enzymes you need is to do the 72 hour fat fecal test. Please feel free to PM me with any questions.

amyr · Mar 8, 2009

That # is considered borderline insufficent according to my GI. We went through the same thing. My son who was malnourished had an elastase # of 356. Originally I was told by the covering Pulmonologist no enzymes were needed. Thankfully his Dr. thought he needed them and started him on them. Here we are 11 months later and my son who was NEVER on the charts has gained 20lbs!! We have since been to our GI who works with the CF population who has said his # of 356 is borderline insufficent and needs enzymes. He also explained that you cant base it on one elastase test and if there is questions.. You need several and the best way to determine just how much enzymes you need is to do the 72 hour fat fecal test. Please feel free to PM me with any questions.

amyr · Mar 8, 2009

That # is considered borderline insufficent according to my GI. We went through the same thing. My son who was malnourished had an elastase # of 356. Originally I was told by the covering Pulmonologist no enzymes were needed. Thankfully his Dr. thought he needed them and started him on them. Here we are 11 months later and my son who was NEVER on the charts has gained 20lbs!! We have since been to our GI who works with the CF population who has said his # of 356 is borderline insufficent and needs enzymes. He also explained that you cant base it on one elastase test and if there is questions.. You need several and the best way to determine just how much enzymes you need is to do the 72 hour fat fecal test. Please feel free to PM me with any questions.

amyr · Mar 8, 2009

That # is considered borderline insufficent according to my GI. We went through the same thing. My son who was malnourished had an elastase # of 356. Originally I was told by the covering Pulmonologist no enzymes were needed. Thankfully his Dr. thought he needed them and started him on them. Here we are 11 months later and my son who was NEVER on the charts has gained 20lbs!! We have since been to our GI who works with the CF population who has said his # of 356 is borderline insufficent and needs enzymes. He also explained that you cant base it on one elastase test and if there is questions.. You need several and the best way to determine just how much enzymes you need is to do the 72 hour fat fecal test. Please feel free to PM me with any questions.

amyr · Mar 8, 2009

That # is considered borderline insufficent according to my GI. We went through the same thing. My son who was malnourished had an elastase # of 356. Originally I was told by the covering Pulmonologist no enzymes were needed. Thankfully his Dr. thought he needed them and started him on them. Here we are 11 months later and my son who was NEVER on the charts has gained 20lbs!! We have since been to our GI who works with the CF population who has said his # of 356 is borderline insufficent and needs enzymes. He also explained that you cant base it on one elastase test and if there is questions.. You need several and the best way to determine just how much enzymes you need is to do the 72 hour fat fecal test. Please feel free to PM me with any questions.

Mommafirst · Mar 8, 2009

This is such a frustrating subject for me as well and we've been dealing with it for three years.

My daughter's fecal elastase was almost exactly where your dd's is (240) when she was tested as an infant. We were told pancreatic sufficient but that it could always drop into insufficiency.

As we introduced solids, she refused to eat anything, just would take breast milk and mostly only from the breast. Eventually we started enzymes not because of her poops, but because her weight got sooo sluggish -- and I've been told that many pancreatic sufficient CFers are placed on enzymes for the hope that it will help them gain weight.

We have not had her retested for fecal elastase and she is on a small amt of enzymes compared to those that are PI. But we were told that she would definitely be on enzymes if she dropped below 200, so since we were so close it was a reasonable expectation that she is probably dropping.

We were told that a normal (non-CF) person would have a fecal elastase of over 500. That 100 was severe insufficiency and that 200-500 was in the rang of borderline.

I have no suggestions to get your dd to take a supplemented bottle, we had the same issue and all I can give you is the wisdom of the big picture that soon enough it will be foods and other ways to supplement her calories.

Mommafirst · Mar 8, 2009

This is such a frustrating subject for me as well and we've been dealing with it for three years.

My daughter's fecal elastase was almost exactly where your dd's is (240) when she was tested as an infant. We were told pancreatic sufficient but that it could always drop into insufficiency.

As we introduced solids, she refused to eat anything, just would take breast milk and mostly only from the breast. Eventually we started enzymes not because of her poops, but because her weight got sooo sluggish -- and I've been told that many pancreatic sufficient CFers are placed on enzymes for the hope that it will help them gain weight.

We have not had her retested for fecal elastase and she is on a small amt of enzymes compared to those that are PI. But we were told that she would definitely be on enzymes if she dropped below 200, so since we were so close it was a reasonable expectation that she is probably dropping.

We were told that a normal (non-CF) person would have a fecal elastase of over 500. That 100 was severe insufficiency and that 200-500 was in the rang of borderline.

I have no suggestions to get your dd to take a supplemented bottle, we had the same issue and all I can give you is the wisdom of the big picture that soon enough it will be foods and other ways to supplement her calories.

Mommafirst · Mar 8, 2009

This is such a frustrating subject for me as well and we've been dealing with it for three years.

My daughter's fecal elastase was almost exactly where your dd's is (240) when she was tested as an infant. We were told pancreatic sufficient but that it could always drop into insufficiency.

As we introduced solids, she refused to eat anything, just would take breast milk and mostly only from the breast. Eventually we started enzymes not because of her poops, but because her weight got sooo sluggish -- and I've been told that many pancreatic sufficient CFers are placed on enzymes for the hope that it will help them gain weight.

We have not had her retested for fecal elastase and she is on a small amt of enzymes compared to those that are PI. But we were told that she would definitely be on enzymes if she dropped below 200, so since we were so close it was a reasonable expectation that she is probably dropping.

We were told that a normal (non-CF) person would have a fecal elastase of over 500. That 100 was severe insufficiency and that 200-500 was in the rang of borderline.

I have no suggestions to get your dd to take a supplemented bottle, we had the same issue and all I can give you is the wisdom of the big picture that soon enough it will be foods and other ways to supplement her calories.

Mommafirst · Mar 8, 2009

This is such a frustrating subject for me as well and we've been dealing with it for three years.

My daughter's fecal elastase was almost exactly where your dd's is (240) when she was tested as an infant. We were told pancreatic sufficient but that it could always drop into insufficiency.

As we introduced solids, she refused to eat anything, just would take breast milk and mostly only from the breast. Eventually we started enzymes not because of her poops, but because her weight got sooo sluggish -- and I've been told that many pancreatic sufficient CFers are placed on enzymes for the hope that it will help them gain weight.

We have not had her retested for fecal elastase and she is on a small amt of enzymes compared to those that are PI. But we were told that she would definitely be on enzymes if she dropped below 200, so since we were so close it was a reasonable expectation that she is probably dropping.

We were told that a normal (non-CF) person would have a fecal elastase of over 500. That 100 was severe insufficiency and that 200-500 was in the rang of borderline.

I have no suggestions to get your dd to take a supplemented bottle, we had the same issue and all I can give you is the wisdom of the big picture that soon enough it will be foods and other ways to supplement her calories.

Mommafirst · Mar 8, 2009

This is such a frustrating subject for me as well and we've been dealing with it for three years.
 
 My daughter's fecal elastase was almost exactly where your dd's is (240) when she was tested as an infant. We were told pancreatic sufficient but that it could always drop into insufficiency.
 
 As we introduced solids, she refused to eat anything, just would take breast milk and mostly only from the breast. Eventually we started enzymes not because of her poops, but because her weight got sooo sluggish -- and I've been told that many pancreatic sufficient CFers are placed on enzymes for the hope that it will help them gain weight.
 
 We have not had her retested for fecal elastase and she is on a small amt of enzymes compared to those that are PI. But we were told that she would definitely be on enzymes if she dropped below 200, so since we were so close it was a reasonable expectation that she is probably dropping.
 
 We were told that a normal (non-CF) person would have a fecal elastase of over 500. That 100 was severe insufficiency and that 200-500 was in the rang of borderline.
 
 I have no suggestions to get your dd to take a supplemented bottle, we had the same issue and all I can give you is the wisdom of the big picture that soon enough it will be foods and other ways to supplement her calories.

Pancreatic sufficient -- or not??? Help! Confused!

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