Wow....I am realizing by descriptions here that a typical dose is WAY higher than what the doc prescribed for my daughter. She is only on one "creon 6" per meal. None with snacks. Compared to your 7-8 "creon 12" per meal plus snack pills. And Printer's 10 "creon 24" per meal. This has been very helpful because if we don't see much improvement in my daughter, this may not necessarily rule out pancreatic malfunction, it might just be the fact that the doseage of creon isn't high enough. Shouldn't the doctor have started her on a bigger dose? Were you implying by your response to your mother in law that there is no really bad side effect from being on enzymes long-term? I don't know much about this as you can tell. I appreciate your help.
Creon dosage
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Wow....I am realizing by descriptions here that a typical dose is WAY higher than what the doc prescribed for my daughter. She is only on one "creon 6" per meal. None with snacks. Compared to your 7-8 "creon 12" per meal plus snack pills. And Printer's 10 "creon 24" per meal. This has been very helpful because if we don't see much improvement in my daughter, this may not necessarily rule out pancreatic malfunction, it might just be the fact that the doseage of creon isn't high enough. Shouldn't the doctor have started her on a bigger dose? Were you implying by your response to your mother in law that there is no really bad side effect from being on enzymes long-term? I don't know much about this as you can tell. I appreciate your help.
From my teenage years until early 2009, I was stuck at a certain weight that I never could break no matter what. I went from 98 pounds (when I was in college, with no insurance, and no enzymes due to my own fault) to when I was busting my butt trying to gain (about 125-130). Then in early 2009 I jacked up my Creon to about 6 Creon-24 per meal - and gained 15 pounds or more in a month. Since then I've gotten up to about 160 lbs, and have a gut I need to do something about 
From my teenage years until early 2009, I was stuck at a certain weight that I never could break no matter what. I went from 98 pounds (when I was in college, with no insurance, and no enzymes due to my own fault) to when I was busting my butt trying to gain (about 125-130). Then in early 2009 I jacked up my Creon to about 6 Creon-24 per meal - and gained 15 pounds or more in a month. Since then I've gotten up to about 160 lbs, and have a gut I need to do something about
Hi
We're in South Africa, so hopefully this calculation is not too challenging, considering we're metric, but:
Anna takes Creon 10000. She is currently 11kg. So she is allowed 11 in total per day.
She's thus on 'the maximum', which is quite high compared to other 2 year olds at the clinic.
We've spoken to doctors at CF clinics in Cape Town, and also in Utrecht, Netherlands, and the general consensus is that too many Creon capsules might possibly damage the stomach lining over a period of time, if given persistently, so they advise against it.
We've also been told countless times, there's no set rule re. Creon dosage, it's a case of trial and error, like Bill says. And of course, the doc should give the final word. But that's not to say that there's no wisdom in people's advice and experience...
Good luck! It's a neverending juggle, but you'll make peace with the juggling over time <img src="i/expressions/face-icon-small-smile.gif" border="0">
We're in South Africa, so hopefully this calculation is not too challenging, considering we're metric, but:
Anna takes Creon 10000. She is currently 11kg. So she is allowed 11 in total per day.
She's thus on 'the maximum', which is quite high compared to other 2 year olds at the clinic.
We've spoken to doctors at CF clinics in Cape Town, and also in Utrecht, Netherlands, and the general consensus is that too many Creon capsules might possibly damage the stomach lining over a period of time, if given persistently, so they advise against it.
We've also been told countless times, there's no set rule re. Creon dosage, it's a case of trial and error, like Bill says. And of course, the doc should give the final word. But that's not to say that there's no wisdom in people's advice and experience...
Good luck! It's a neverending juggle, but you'll make peace with the juggling over time <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi
We're in South Africa, so hopefully this calculation is not too challenging, considering we're metric, but:
Anna takes Creon 10000. She is currently 11kg. So she is allowed 11 in total per day.
She's thus on 'the maximum', which is quite high compared to other 2 year olds at the clinic.
We've spoken to doctors at CF clinics in Cape Town, and also in Utrecht, Netherlands, and the general consensus is that too many Creon capsules might possibly damage the stomach lining over a period of time, if given persistently, so they advise against it.
We've also been told countless times, there's no set rule re. Creon dosage, it's a case of trial and error, like Bill says. And of course, the doc should give the final word. But that's not to say that there's no wisdom in people's advice and experience...
Good luck! It's a neverending juggle, but you'll make peace with the juggling over time <img src="i/expressions/face-icon-small-smile.gif" border="0">
We're in South Africa, so hopefully this calculation is not too challenging, considering we're metric, but:
Anna takes Creon 10000. She is currently 11kg. So she is allowed 11 in total per day.
She's thus on 'the maximum', which is quite high compared to other 2 year olds at the clinic.
We've spoken to doctors at CF clinics in Cape Town, and also in Utrecht, Netherlands, and the general consensus is that too many Creon capsules might possibly damage the stomach lining over a period of time, if given persistently, so they advise against it.
We've also been told countless times, there's no set rule re. Creon dosage, it's a case of trial and error, like Bill says. And of course, the doc should give the final word. But that's not to say that there's no wisdom in people's advice and experience...
Good luck! It's a neverending juggle, but you'll make peace with the juggling over time <img src="i/expressions/face-icon-small-smile.gif" border="0">
When a Doctor faces the issue of placing a PI patient on enzymes, he/she has to guess at the amount of enzymes are being produced by the pancreasis at that time. Because the patient is PI, it is clear that the pancrease is not producing 100% of the enzyme needed. So the question is the amount of natural production, that needs to be suplemented, 99%, 0% or something in between.
There are tests that will HELP zero in on the amount of enzymes needed but the tests are only a guide.
Therefore the need for the trial and error approach and the need to be patient while this system works itself out. Even when the optimum amount is arrived at, the patient will continue to need to continue to increase the dosage over his/her lifetime.
Bill
There are tests that will HELP zero in on the amount of enzymes needed but the tests are only a guide.
Therefore the need for the trial and error approach and the need to be patient while this system works itself out. Even when the optimum amount is arrived at, the patient will continue to need to continue to increase the dosage over his/her lifetime.
Bill
When a Doctor faces the issue of placing a PI patient on enzymes, he/she has to guess at the amount of enzymes are being produced by the pancreasis at that time. Because the patient is PI, it is clear that the pancrease is not producing 100% of the enzyme needed. So the question is the amount of natural production, that needs to be suplemented, 99%, 0% or something in between.
There are tests that will HELP zero in on the amount of enzymes needed but the tests are only a guide.
Therefore the need for the trial and error approach and the need to be patient while this system works itself out. Even when the optimum amount is arrived at, the patient will continue to need to continue to increase the dosage over his/her lifetime.
Bill
There are tests that will HELP zero in on the amount of enzymes needed but the tests are only a guide.
Therefore the need for the trial and error approach and the need to be patient while this system works itself out. Even when the optimum amount is arrived at, the patient will continue to need to continue to increase the dosage over his/her lifetime.
Bill
When DS was a baby, I'd give him his enzymes and it was a hit or miss if he'd only eat an ounce or two instead of his usual 4-6. Or if he didn't eat at all. I was concerned especially about the product literature talking about strictions and issues caused by too many enzymes, so I asked his doctor who told us that it refers more to a HUGE number of enzymes and not just a few missed meals or an extra capsule here of there.
DS usually eats the same food things, but every once in awhile eats something with a heck of a lot more fat, so we adjust accordingly. Pizza night he usually gets more enzymes due to the extra cheese, pepperoni and the extra glass of carnation instant breakfast made with whole milk and cream he drinks. Breakfast he gets fewer enzymes as it's usually CIB and a poptart.
DS usually eats the same food things, but every once in awhile eats something with a heck of a lot more fat, so we adjust accordingly. Pizza night he usually gets more enzymes due to the extra cheese, pepperoni and the extra glass of carnation instant breakfast made with whole milk and cream he drinks. Breakfast he gets fewer enzymes as it's usually CIB and a poptart.
When DS was a baby, I'd give him his enzymes and it was a hit or miss if he'd only eat an ounce or two instead of his usual 4-6. Or if he didn't eat at all. I was concerned especially about the product literature talking about strictions and issues caused by too many enzymes, so I asked his doctor who told us that it refers more to a HUGE number of enzymes and not just a few missed meals or an extra capsule here of there.
DS usually eats the same food things, but every once in awhile eats something with a heck of a lot more fat, so we adjust accordingly. Pizza night he usually gets more enzymes due to the extra cheese, pepperoni and the extra glass of carnation instant breakfast made with whole milk and cream he drinks. Breakfast he gets fewer enzymes as it's usually CIB and a poptart.
DS usually eats the same food things, but every once in awhile eats something with a heck of a lot more fat, so we adjust accordingly. Pizza night he usually gets more enzymes due to the extra cheese, pepperoni and the extra glass of carnation instant breakfast made with whole milk and cream he drinks. Breakfast he gets fewer enzymes as it's usually CIB and a poptart.
Thanks everybody for your help and input. I am realizing like you said that dosing can be tricky and trial and error and the need to be flexible depending on the day. But I am also realizing that I think my daughter was prescribed far too low a dose. I looked up dosing guidelines according to FDA standards for her weight in kg, and she should take a <span style="text-decoration: underline;">minimum of 15,000 units per meal (more if PI is worse). Doctor told us only one 6000 unit pill per meal and none for snacks. This is 2-3 time LESS than the minimum. I can respect him starting at a lower dose and working up, but he is also using this as a test as to whether it is truly the pancreas that caused our abnormal 72-hour fecal fat test, and in my mind, if the dose is too low to make improvement anyway, it is not a sound test. Is anybody else's child on such a low dose? Should I question the doctor on this and politely suggest he is in error?
Thanks everybody for your help and input. I am realizing like you said that dosing can be tricky and trial and error and the need to be flexible depending on the day. But I am also realizing that I think my daughter was prescribed far too low a dose. I looked up dosing guidelines according to FDA standards for her weight in kg, and she should take a <span style="text-decoration: underline;">minimum of 15,000 units per meal (more if PI is worse). Doctor told us only one 6000 unit pill per meal and none for snacks. This is 2-3 time LESS than the minimum. I can respect him starting at a lower dose and working up, but he is also using this as a test as to whether it is truly the pancreas that caused our abnormal 72-hour fecal fat test, and in my mind, if the dose is too low to make improvement anyway, it is not a sound test. Is anybody else's child on such a low dose? Should I question the doctor on this and politely suggest he is in error?