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

[SarahProcter]

It will be nice to know if the number has changed, one way or another, at least. Something concrete to tell me whether her pancreatic function has diminished.

Comparing test values is made more complex by the fact that different labs use different scales, too - the first time they described the test to me, they told me that 200-400 was moderate-mild insufficiency and that 400+ was the normal range - but then when they actually did the test,they used a lab that calibrates the values differently, such that 100-200 is moderate-mild insufficiency and 200+ is normal. And then didn't mention this to me, told me that her value was 227, and didn't understand why I burst into tears >< Straightening that confusion out was messy!

Just to make things less predictable, she has one DF508 mutation and one very rare mutation, S1159P. Not much is known about S1159P, but it's associated with pancreatic sufficiency into adulthood, in the small set of cases they could dig up. So. We have some reason to hope, and a lot of confusion, and a lot of fretting!

I do so hope that her pancreas is not in decline <img src="i/expressions/face-icon-small-sad.gif" border="0"> I worry so about my little baby.

 

[SarahProcter]

It will be nice to know if the number has changed, one way or another, at least. Something concrete to tell me whether her pancreatic function has diminished.

Comparing test values is made more complex by the fact that different labs use different scales, too - the first time they described the test to me, they told me that 200-400 was moderate-mild insufficiency and that 400+ was the normal range - but then when they actually did the test,they used a lab that calibrates the values differently, such that 100-200 is moderate-mild insufficiency and 200+ is normal. And then didn't mention this to me, told me that her value was 227, and didn't understand why I burst into tears >< Straightening that confusion out was messy!

Just to make things less predictable, she has one DF508 mutation and one very rare mutation, S1159P. Not much is known about S1159P, but it's associated with pancreatic sufficiency into adulthood, in the small set of cases they could dig up. So. We have some reason to hope, and a lot of confusion, and a lot of fretting!

I do so hope that her pancreas is not in decline <img src="i/expressions/face-icon-small-sad.gif" border="0"> I worry so about my little baby.

 

[SarahProcter]

It will be nice to know if the number has changed, one way or another, at least. Something concrete to tell me whether her pancreatic function has diminished.

Comparing test values is made more complex by the fact that different labs use different scales, too - the first time they described the test to me, they told me that 200-400 was moderate-mild insufficiency and that 400+ was the normal range - but then when they actually did the test,they used a lab that calibrates the values differently, such that 100-200 is moderate-mild insufficiency and 200+ is normal. And then didn't mention this to me, told me that her value was 227, and didn't understand why I burst into tears >< Straightening that confusion out was messy!

Just to make things less predictable, she has one DF508 mutation and one very rare mutation, S1159P. Not much is known about S1159P, but it's associated with pancreatic sufficiency into adulthood, in the small set of cases they could dig up. So. We have some reason to hope, and a lot of confusion, and a lot of fretting!

I do so hope that her pancreas is not in decline <img src="i/expressions/face-icon-small-sad.gif" border="0"> I worry so about my little baby.

 

[SarahProcter]

It will be nice to know if the number has changed, one way or another, at least. Something concrete to tell me whether her pancreatic function has diminished.

Comparing test values is made more complex by the fact that different labs use different scales, too - the first time they described the test to me, they told me that 200-400 was moderate-mild insufficiency and that 400+ was the normal range - but then when they actually did the test,they used a lab that calibrates the values differently, such that 100-200 is moderate-mild insufficiency and 200+ is normal. And then didn't mention this to me, told me that her value was 227, and didn't understand why I burst into tears >< Straightening that confusion out was messy!

Just to make things less predictable, she has one DF508 mutation and one very rare mutation, S1159P. Not much is known about S1159P, but it's associated with pancreatic sufficiency into adulthood, in the small set of cases they could dig up. So. We have some reason to hope, and a lot of confusion, and a lot of fretting!

I do so hope that her pancreas is not in decline <img src="i/expressions/face-icon-small-sad.gif" border="0"> I worry so about my little baby.

 

[SarahProcter]

It will be nice to know if the number has changed, one way or another, at least. Something concrete to tell me whether her pancreatic function has diminished.
<br />
<br />Comparing test values is made more complex by the fact that different labs use different scales, too - the first time they described the test to me, they told me that 200-400 was moderate-mild insufficiency and that 400+ was the normal range - but then when they actually did the test,they used a lab that calibrates the values differently, such that 100-200 is moderate-mild insufficiency and 200+ is normal. And then didn't mention this to me, told me that her value was 227, and didn't understand why I burst into tears >< Straightening that confusion out was messy!
<br />
<br />Just to make things less predictable, she has one DF508 mutation and one very rare mutation, S1159P. Not much is known about S1159P, but it's associated with pancreatic sufficiency into adulthood, in the small set of cases they could dig up. So. We have some reason to hope, and a lot of confusion, and a lot of fretting!
<br />
<br />I do so hope that her pancreas is not in decline <img src="i/expressions/face-icon-small-sad.gif" border="0"> I worry so about my little baby.

 

[letefk]

I would just second what others here have heard. Both my girls are pancreatic sufficient, but they are regularly screened because it is very possible that this could change.

I would suspect that the concern here is the BMI, not the weight. If your child is 95% for height and 50% for weight, then I would guess the BMI (the ratio between the two) is under 50%. In the past few years, there has been a lot of new evidence that CFers who can maintain a BMI of 50% or more have much better outcomes in terms of lung development. So now there is much more emphasis on getting that BMI to 50%. That has been our issue with our youngest. She is very tiny and very petite. We struggle to keep her BMI around that 50% mark. Since she is pancreatic sufficient, we just try to do extra calories in her food (she is older, obviously, and on solid foods!)

I would say that if you don't understand the reasons, ask and ask. The first few years of clinic visits, we arrived with notes and questions ready to ask, and we insisted that things be explained to us so that we understood what we were doing and why. I think that helped train us well for dealing with hospital stays. You have to be your child's advocate. There is a difference between resisting and insisting that you understand!

 

[letefk]

I would just second what others here have heard. Both my girls are pancreatic sufficient, but they are regularly screened because it is very possible that this could change.

I would suspect that the concern here is the BMI, not the weight. If your child is 95% for height and 50% for weight, then I would guess the BMI (the ratio between the two) is under 50%. In the past few years, there has been a lot of new evidence that CFers who can maintain a BMI of 50% or more have much better outcomes in terms of lung development. So now there is much more emphasis on getting that BMI to 50%. That has been our issue with our youngest. She is very tiny and very petite. We struggle to keep her BMI around that 50% mark. Since she is pancreatic sufficient, we just try to do extra calories in her food (she is older, obviously, and on solid foods!)

I would say that if you don't understand the reasons, ask and ask. The first few years of clinic visits, we arrived with notes and questions ready to ask, and we insisted that things be explained to us so that we understood what we were doing and why. I think that helped train us well for dealing with hospital stays. You have to be your child's advocate. There is a difference between resisting and insisting that you understand!

 

[letefk]

I would just second what others here have heard. Both my girls are pancreatic sufficient, but they are regularly screened because it is very possible that this could change.

I would suspect that the concern here is the BMI, not the weight. If your child is 95% for height and 50% for weight, then I would guess the BMI (the ratio between the two) is under 50%. In the past few years, there has been a lot of new evidence that CFers who can maintain a BMI of 50% or more have much better outcomes in terms of lung development. So now there is much more emphasis on getting that BMI to 50%. That has been our issue with our youngest. She is very tiny and very petite. We struggle to keep her BMI around that 50% mark. Since she is pancreatic sufficient, we just try to do extra calories in her food (she is older, obviously, and on solid foods!)

I would say that if you don't understand the reasons, ask and ask. The first few years of clinic visits, we arrived with notes and questions ready to ask, and we insisted that things be explained to us so that we understood what we were doing and why. I think that helped train us well for dealing with hospital stays. You have to be your child's advocate. There is a difference between resisting and insisting that you understand!

 

[letefk]

I would just second what others here have heard. Both my girls are pancreatic sufficient, but they are regularly screened because it is very possible that this could change.

I would suspect that the concern here is the BMI, not the weight. If your child is 95% for height and 50% for weight, then I would guess the BMI (the ratio between the two) is under 50%. In the past few years, there has been a lot of new evidence that CFers who can maintain a BMI of 50% or more have much better outcomes in terms of lung development. So now there is much more emphasis on getting that BMI to 50%. That has been our issue with our youngest. She is very tiny and very petite. We struggle to keep her BMI around that 50% mark. Since she is pancreatic sufficient, we just try to do extra calories in her food (she is older, obviously, and on solid foods!)

I would say that if you don't understand the reasons, ask and ask. The first few years of clinic visits, we arrived with notes and questions ready to ask, and we insisted that things be explained to us so that we understood what we were doing and why. I think that helped train us well for dealing with hospital stays. You have to be your child's advocate. There is a difference between resisting and insisting that you understand!

 

[letefk]

I would just second what others here have heard. Both my girls are pancreatic sufficient, but they are regularly screened because it is very possible that this could change.
<br />
<br />I would suspect that the concern here is the BMI, not the weight. If your child is 95% for height and 50% for weight, then I would guess the BMI (the ratio between the two) is under 50%. In the past few years, there has been a lot of new evidence that CFers who can maintain a BMI of 50% or more have much better outcomes in terms of lung development. So now there is much more emphasis on getting that BMI to 50%. That has been our issue with our youngest. She is very tiny and very petite. We struggle to keep her BMI around that 50% mark. Since she is pancreatic sufficient, we just try to do extra calories in her food (she is older, obviously, and on solid foods!)
<br />
<br />I would say that if you don't understand the reasons, ask and ask. The first few years of clinic visits, we arrived with notes and questions ready to ask, and we insisted that things be explained to us so that we understood what we were doing and why. I think that helped train us well for dealing with hospital stays. You have to be your child's advocate. There is a difference between resisting and insisting that you understand!

 

[grassisgreener]

<b><b>(1) Do some babies start out pancreatic sufficient and then become insufficient? <b>I think this definately happens in some cases. My daughter was dx at 12 months. She was exclusively breastfed until starting cereal at 5 months. It was shortly after adding babyfoods to her diet that her weight started to slow, until then she was gaining really well. She was around 18-19 pounds when she was dx w/cf and of course was considered PI by then.</b>

(2) Would having a "low normal" amount of pancreatic enzymes warrant supplementation? <b>That makes sense, but I really don't know enough about it.</b>

(3) If she's malnourished, why is she so darn tall? <b>Not sure, maybe genetics? Does she have tall genes?</b>

(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? <b>My daughter's levels were all good when tested at her dx. </b>

(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! I don't know, I had seen alot of baby diapers when my daughter was born bc I used to work in daycare during college. I never noticed anything weird about her poops.</b></b>

I hope you can get some answers soon. I think it is really important to for us parents to stay on top of these things so our kids don't get overlooked. Hopefully your daughter is PS but try not to worry too much about the PI or PS bc that may not even matter in her long-term health. Sending lots of hugs to you and your little girl!

 

[grassisgreener]

<b><b>(1) Do some babies start out pancreatic sufficient and then become insufficient? <b>I think this definately happens in some cases. My daughter was dx at 12 months. She was exclusively breastfed until starting cereal at 5 months. It was shortly after adding babyfoods to her diet that her weight started to slow, until then she was gaining really well. She was around 18-19 pounds when she was dx w/cf and of course was considered PI by then.</b>

(2) Would having a "low normal" amount of pancreatic enzymes warrant supplementation? <b>That makes sense, but I really don't know enough about it.</b>

(3) If she's malnourished, why is she so darn tall? <b>Not sure, maybe genetics? Does she have tall genes?</b>

(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? <b>My daughter's levels were all good when tested at her dx. </b>

(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! I don't know, I had seen alot of baby diapers when my daughter was born bc I used to work in daycare during college. I never noticed anything weird about her poops.</b></b>

I hope you can get some answers soon. I think it is really important to for us parents to stay on top of these things so our kids don't get overlooked. Hopefully your daughter is PS but try not to worry too much about the PI or PS bc that may not even matter in her long-term health. Sending lots of hugs to you and your little girl!

 

[grassisgreener]

<b><b>(1) Do some babies start out pancreatic sufficient and then become insufficient? <b>I think this definately happens in some cases. My daughter was dx at 12 months. She was exclusively breastfed until starting cereal at 5 months. It was shortly after adding babyfoods to her diet that her weight started to slow, until then she was gaining really well. She was around 18-19 pounds when she was dx w/cf and of course was considered PI by then.</b>

(2) Would having a "low normal" amount of pancreatic enzymes warrant supplementation? <b>That makes sense, but I really don't know enough about it.</b>

(3) If she's malnourished, why is she so darn tall? <b>Not sure, maybe genetics? Does she have tall genes?</b>

(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? <b>My daughter's levels were all good when tested at her dx. </b>

(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! I don't know, I had seen alot of baby diapers when my daughter was born bc I used to work in daycare during college. I never noticed anything weird about her poops.</b></b>

I hope you can get some answers soon. I think it is really important to for us parents to stay on top of these things so our kids don't get overlooked. Hopefully your daughter is PS but try not to worry too much about the PI or PS bc that may not even matter in her long-term health. Sending lots of hugs to you and your little girl!

 

[grassisgreener]

<b><b>(1) Do some babies start out pancreatic sufficient and then become insufficient? <b>I think this definately happens in some cases. My daughter was dx at 12 months. She was exclusively breastfed until starting cereal at 5 months. It was shortly after adding babyfoods to her diet that her weight started to slow, until then she was gaining really well. She was around 18-19 pounds when she was dx w/cf and of course was considered PI by then.</b>

(2) Would having a "low normal" amount of pancreatic enzymes warrant supplementation? <b>That makes sense, but I really don't know enough about it.</b>

(3) If she's malnourished, why is she so darn tall? <b>Not sure, maybe genetics? Does she have tall genes?</b>

(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? <b>My daughter's levels were all good when tested at her dx. </b>

(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! I don't know, I had seen alot of baby diapers when my daughter was born bc I used to work in daycare during college. I never noticed anything weird about her poops.</b></b>

I hope you can get some answers soon. I think it is really important to for us parents to stay on top of these things so our kids don't get overlooked. Hopefully your daughter is PS but try not to worry too much about the PI or PS bc that may not even matter in her long-term health. Sending lots of hugs to you and your little girl!

 

[grassisgreener]

<b><b>(1) Do some babies start out pancreatic sufficient and then become insufficient? <b>I think this definately happens in some cases. My daughter was dx at 12 months. She was exclusively breastfed until starting cereal at 5 months. It was shortly after adding babyfoods to her diet that her weight started to slow, until then she was gaining really well. She was around 18-19 pounds when she was dx w/cf and of course was considered PI by then.</b>
<br />
<br />(2) Would having a "low normal" amount of pancreatic enzymes warrant supplementation? <b>That makes sense, but I really don't know enough about it.</b>
<br />
<br />(3) If she's malnourished, why is she so darn tall? <b>Not sure, maybe genetics? Does she have tall genes?</b>
<br />
<br />(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? <b>My daughter's levels were all good when tested at her dx. </b>
<br />
<br />(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! I don't know, I had seen alot of baby diapers when my daughter was born bc I used to work in daycare during college. I never noticed anything weird about her poops.</b></b>
<br />
<br />I hope you can get some answers soon. I think it is really important to for us parents to stay on top of these things so our kids don't get overlooked. Hopefully your daughter is PS but try not to worry too much about the PI or PS bc that may not even matter in her long-term health. Sending lots of hugs to you and your little girl!

 

[janddburke]

my daughter is now considered PS. but we did give her enzymes for the first 5 years of her life, from 5 months until 5 1/2 years old. we were not aware that it was possible for CFers to be pancreatic sufficient. the resources available to us now for research just were not available and I'm not sure I was ready at that point to digest(pun) it all anyway.
after 5 years of 1 Pancrease MT4 before each meal or snack I started to 'forget' a few times. nothing happened. so we suggested to the dr. that she might just not need them. he agreed to let us try over a long weekend (just in case we needed to add them back in). We've never looked back.
I think like alot of what we do there are no hard and fast rules around dosages etc. just trial and error.

best of luck to you and yours.

 

[janddburke]

my daughter is now considered PS. but we did give her enzymes for the first 5 years of her life, from 5 months until 5 1/2 years old. we were not aware that it was possible for CFers to be pancreatic sufficient. the resources available to us now for research just were not available and I'm not sure I was ready at that point to digest(pun) it all anyway.
after 5 years of 1 Pancrease MT4 before each meal or snack I started to 'forget' a few times. nothing happened. so we suggested to the dr. that she might just not need them. he agreed to let us try over a long weekend (just in case we needed to add them back in). We've never looked back.
I think like alot of what we do there are no hard and fast rules around dosages etc. just trial and error.

best of luck to you and yours.

 

[janddburke]

my daughter is now considered PS. but we did give her enzymes for the first 5 years of her life, from 5 months until 5 1/2 years old. we were not aware that it was possible for CFers to be pancreatic sufficient. the resources available to us now for research just were not available and I'm not sure I was ready at that point to digest(pun) it all anyway.
after 5 years of 1 Pancrease MT4 before each meal or snack I started to 'forget' a few times. nothing happened. so we suggested to the dr. that she might just not need them. he agreed to let us try over a long weekend (just in case we needed to add them back in). We've never looked back.
I think like alot of what we do there are no hard and fast rules around dosages etc. just trial and error.

best of luck to you and yours.

 

[janddburke]

my daughter is now considered PS. but we did give her enzymes for the first 5 years of her life, from 5 months until 5 1/2 years old. we were not aware that it was possible for CFers to be pancreatic sufficient. the resources available to us now for research just were not available and I'm not sure I was ready at that point to digest(pun) it all anyway.
after 5 years of 1 Pancrease MT4 before each meal or snack I started to 'forget' a few times. nothing happened. so we suggested to the dr. that she might just not need them. he agreed to let us try over a long weekend (just in case we needed to add them back in). We've never looked back.
I think like alot of what we do there are no hard and fast rules around dosages etc. just trial and error.

best of luck to you and yours.

 

[janddburke]

my daughter is now considered PS. but we did give her enzymes for the first 5 years of her life, from 5 months until 5 1/2 years old. we were not aware that it was possible for CFers to be pancreatic sufficient. the resources available to us now for research just were not available and I'm not sure I was ready at that point to digest(pun) it all anyway.
<br /> after 5 years of 1 Pancrease MT4 before each meal or snack I started to 'forget' a few times. nothing happened. so we suggested to the dr. that she might just not need them. he agreed to let us try over a long weekend (just in case we needed to add them back in). We've never looked back.
<br /> I think like alot of what we do there are no hard and fast rules around dosages etc. just trial and error.
<br />
<br />best of luck to you and yours.