I need help. I have a 2 1/2 year old daughter with CF who has done well with eating all this time. My issue is the people caring for her. I need to be able to tell them exactly how to dose the creon. MD says take 4 with meals, 2-3 with snacks. She's on creon 6. I usually give her 2 to start a meal, then the remaining 2 during if she eats everything. has anyone been given a guide on how to determine the number of creon to give? Like 1 creon per "x" amount of calories/fat grams? I think that would make more sense to my caregivers then what I've been telling them. Thanks!!
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creon help
- Thread starter ajb900
- Start date
I need help. I have a 2 1/2 year old daughter with CF who has done well with eating all this time. My issue is the people caring for her. I need to be able to tell them exactly how to dose the creon. MD says take 4 with meals, 2-3 with snacks. She's on creon 6. I usually give her 2 to start a meal, then the remaining 2 during if she eats everything. has anyone been given a guide on how to determine the number of creon to give? Like 1 creon per "x" amount of calories/fat grams? I think that would make more sense to my caregivers then what I've been telling them. Thanks!!
I need help. I have a 2 1/2 year old daughter with CF who has done well with eating all this time. My issue is the people caring for her. I need to be able to tell them exactly how to dose the creon. MD says take 4 with meals, 2-3 with snacks. She's on creon 6. I usually give her 2 to start a meal, then the remaining 2 during if she eats everything. has anyone been given a guide on how to determine the number of creon to give? Like 1 creon per "x" amount of calories/fat grams? I think that would make more sense to my caregivers then what I've been telling them. Thanks!!
K
Kaethe108
Guest
Yes, we know that our daughter needs 2500 units (is that the right word in English?) with each gram fat. This is half of these little cups that come with Creon for kids.
BUT this is different for every patient! So please talk with your CF-doctor or CF-dietitian!
BUT this is different for every patient! So please talk with your CF-doctor or CF-dietitian!
K
Kaethe108
Guest
Yes, we know that our daughter needs 2500 units (is that the right word in English?) with each gram fat. This is half of these little cups that come with Creon for kids.
BUT this is different for every patient! So please talk with your CF-doctor or CF-dietitian!
BUT this is different for every patient! So please talk with your CF-doctor or CF-dietitian!
K
Kaethe108
Guest
Yes, we know that our daughter needs 2500 units (is that the right word in English?) with each gram fat. This is half of these little cups that come with Creon for kids.
BUT this is different for every patient! So please talk with your CF-doctor or CF-dietitian!
BUT this is different for every patient! So please talk with your CF-doctor or CF-dietitian!
momtohazel
New member
we have asked this question many times, we have asked our daughter's CF doc, her CF nutritionist and a very highly regarded pediatric GI specialist...and unfortunately there is not, as far as we have understood them<br><br>in addition, the regulation of enzymes (despite best efforts) is very hard. what i mean is that it difficult to "titrate" (if that is an appropriate term) enzymes (i also heard this from a women's whose job is to regulate supplements). so we think we are giving our kids "x" amount of lipase units/capsule but that is really a "best guess" or "average" as i understand it. if you were to "average" all the enzymes in the entire bottle you would get that average lipase units/cap that is listed on the bottle.<br><br>so even if there was a "formula" i.e. "x" amount enzymes for "x" amount of calories/fat, you could not guarantee the exact amt of enzymes in each cap.<br><br>we have been frustrated by this from the get go but doesn't sound like there is much that can be done except to "do our best"<br><br>there is a "new" non porcine type of enzyme being studied called liprotamase that potentially would help that somewhat (at the very least it is less susceptible to stomach acid and may reduce/eliminate the need for PPIs) but unfortunately, there is not that much info available and i am unsure when, if ever, it may come to market. Which is unfortunate, given the incidence and early manifestations of PI I would like to see more money/research being directed at improving digestion especially since we know the correlation between weight and lung function<br><br>sorry, got off an a little tangent.<br>good luck <br>
momtohazel
New member
we have asked this question many times, we have asked our daughter's CF doc, her CF nutritionist and a very highly regarded pediatric GI specialist...and unfortunately there is not, as far as we have understood them<br><br>in addition, the regulation of enzymes (despite best efforts) is very hard. what i mean is that it difficult to "titrate" (if that is an appropriate term) enzymes (i also heard this from a women's whose job is to regulate supplements). so we think we are giving our kids "x" amount of lipase units/capsule but that is really a "best guess" or "average" as i understand it. if you were to "average" all the enzymes in the entire bottle you would get that average lipase units/cap that is listed on the bottle.<br><br>so even if there was a "formula" i.e. "x" amount enzymes for "x" amount of calories/fat, you could not guarantee the exact amt of enzymes in each cap.<br><br>we have been frustrated by this from the get go but doesn't sound like there is much that can be done except to "do our best"<br><br>there is a "new" non porcine type of enzyme being studied called liprotamase that potentially would help that somewhat (at the very least it is less susceptible to stomach acid and may reduce/eliminate the need for PPIs) but unfortunately, there is not that much info available and i am unsure when, if ever, it may come to market. Which is unfortunate, given the incidence and early manifestations of PI I would like to see more money/research being directed at improving digestion especially since we know the correlation between weight and lung function<br><br>sorry, got off an a little tangent.<br>good luck <br>
momtohazel
New member
we have asked this question many times, we have asked our daughter's CF doc, her CF nutritionist and a very highly regarded pediatric GI specialist...and unfortunately there is not, as far as we have understood them<br><br>in addition, the regulation of enzymes (despite best efforts) is very hard. what i mean is that it difficult to "titrate" (if that is an appropriate term) enzymes (i also heard this from a women's whose job is to regulate supplements). so we think we are giving our kids "x" amount of lipase units/capsule but that is really a "best guess" or "average" as i understand it. if you were to "average" all the enzymes in the entire bottle you would get that average lipase units/cap that is listed on the bottle.<br><br>so even if there was a "formula" i.e. "x" amount enzymes for "x" amount of calories/fat, you could not guarantee the exact amt of enzymes in each cap.<br><br>we have been frustrated by this from the get go but doesn't sound like there is much that can be done except to "do our best"<br><br>there is a "new" non porcine type of enzyme being studied called liprotamase that potentially would help that somewhat (at the very least it is less susceptible to stomach acid and may reduce/eliminate the need for PPIs) but unfortunately, there is not that much info available and i am unsure when, if ever, it may come to market. Which is unfortunate, given the incidence and early manifestations of PI I would like to see more money/research being directed at improving digestion especially since we know the correlation between weight and lung function<br><br>sorry, got off an a little tangent.<br>good luck <br>
<P>I had to determine the correct amount of Creon to take without taking too much. This was done under the watchful eye of a Gastro CF Researcher. I started off at a level below what I believed I needed and watched for the signs that I wasn't taking enough (gas, stomach discomfort and stool). I increased the dosage as needed until there was no noticable pain, gas or diarrhea. At that point it was decided that I was taking the proper dose. The amount of enzyme needed will vary with each individual based upon the amount of natural enzyme that is produced by the pancrease. As the function of the pancrease detereates, the amount of enzymes will need to be increased. This may be the reason that Doctors are not willing to come up with a one size fits all formula.</P>
<P></P>
<P>I hope that this helps. Bill</P>
<P></P>
<P>I hope that this helps. Bill</P>
<P>I had to determine the correct amount of Creon to take without taking too much. This was done under the watchful eye of a Gastro CF Researcher. I started off at a level below what I believed I needed and watched for the signs that I wasn't taking enough (gas, stomach discomfort and stool). I increased the dosage as needed until there was no noticable pain, gas or diarrhea. At that point it was decided that I was taking the proper dose. The amount of enzyme needed will vary with each individual based upon the amount of natural enzyme that is produced by the pancrease. As the function of the pancrease detereates, the amount of enzymes will need to be increased. This may be the reason that Doctors are not willing to come up with a one size fits all formula.</P>
<P></P>
<P>I hope that this helps. Bill</P>
<P></P>
<P>I hope that this helps. Bill</P>
<P>I had to determine the correct amount of Creon to take without taking too much. This was done under the watchful eye of a Gastro CF Researcher. I started off at a level below what I believed I needed and watched for the signs that I wasn't taking enough (gas, stomach discomfort and stool). I increased the dosage as needed until there was no noticable pain, gas or diarrhea. At that point it was decided that I was taking the proper dose. The amount of enzyme needed will vary with each individual based upon the amount of natural enzyme that is produced by the pancrease. As the function of the pancrease detereates, the amount of enzymes will need to be increased. This may be the reason that Doctors are not willing to come up with a one size fits all formula.</P>
<P></P>
<P>I hope that this helps. Bill</P>
<P></P>
<P>I hope that this helps. Bill</P>
Even the deterioration of the pancreas doesn't necessarily correlate when dosing enzymes. The physiological environment (e.g., pH of the stomach, intestines) affects enzyme efficacy - thus why so many people with CF are on PPIs. DD is severely PI yet not on a PPI...the next individual with severe PI may need a PPI in order to absorb/digest fats...not an exact science at all! <img src="i/expressions/face-icon-small-sad.gif" border="0">
Even the deterioration of the pancreas doesn't necessarily correlate when dosing enzymes. The physiological environment (e.g., pH of the stomach, intestines) affects enzyme efficacy - thus why so many people with CF are on PPIs. DD is severely PI yet not on a PPI...the next individual with severe PI may need a PPI in order to absorb/digest fats...not an exact science at all! <img src="i/expressions/face-icon-small-sad.gif" border="0">
Even the deterioration of the pancreas doesn't necessarily correlate when dosing enzymes. The physiological environment (e.g., pH of the stomach, intestines) affects enzyme efficacy - thus why so many people with CF are on PPIs. DD is severely PI yet not on a PPI...the next individual with severe PI may need a PPI in order to absorb/digest fats...not an exact science at all! <img src="i/expressions/face-icon-small-sad.gif" border="0">
The amount varies from person to person, depending on how well/bad your digestive system is working.
What I've always done is regulate depending on several variables:
1) how much fat had the actual meal (more fat = more enzymes)
2) my bowel movements (too loose = increase enzymes, too hard/several days without going = reduce enzymes).
There's many more factors, but that's my system in a nutshell...
What I've always done is regulate depending on several variables:
1) how much fat had the actual meal (more fat = more enzymes)
2) my bowel movements (too loose = increase enzymes, too hard/several days without going = reduce enzymes).
There's many more factors, but that's my system in a nutshell...
The amount varies from person to person, depending on how well/bad your digestive system is working.
What I've always done is regulate depending on several variables:
1) how much fat had the actual meal (more fat = more enzymes)
2) my bowel movements (too loose = increase enzymes, too hard/several days without going = reduce enzymes).
There's many more factors, but that's my system in a nutshell...
What I've always done is regulate depending on several variables:
1) how much fat had the actual meal (more fat = more enzymes)
2) my bowel movements (too loose = increase enzymes, too hard/several days without going = reduce enzymes).
There's many more factors, but that's my system in a nutshell...