Creon dosage

[jmom]

My daughter recently had abnormal values (malabsorbs 12%) on her 72 hour fecal fat test and the doctor is convinced we have ruled out all non-pancreatic causes. This leaves us with the pancreas as the culprit, but the confusing thing is that her pancreatic elastase came back normal. As a kind of a "trial" or "test", doctor is putting her on creon, and if it helps, this will seal the deal on him thinkingshe is truly pancreatic insufficient. She startedthe creonlast week, and it seems to have helped her symptoms, but then last night she had another bad episode in the toilet. This makes me question all over again whether it is indeed her pancreas or not. Shouldn't the creon take care of this?
So, my next question is, maybe the doseage isn't high enough? So, I was wondering what a typical dose is for a PI kid? She is on one pill of creon 6 three times a day. Is this a minimal dose or a high dose? I suspect her malabsorption is not that severe at only 12% - does anybody know what a typical malabsorption percentage is for PI?
I appreciate so much having a place where I can post a question to an experienced group of people. For anyone who has gone through a difficult diagnostic process, these are the things that help us survive - finding a support group is so important.

 

[jmom]

My daughter recently had abnormal values (malabsorbs 12%) on her 72 hour fecal fat test and the doctor is convinced we have ruled out all non-pancreatic causes. This leaves us with the pancreas as the culprit, but the confusing thing is that her pancreatic elastase came back normal. As a kind of a "trial" or "test", doctor is putting her on creon, and if it helps, this will seal the deal on him thinkingshe is truly pancreatic insufficient. She startedthe creonlast week, and it seems to have helped her symptoms, but then last night she had another bad episode in the toilet. This makes me question all over again whether it is indeed her pancreas or not. Shouldn't the creon take care of this?
So, my next question is, maybe the doseage isn't high enough? So, I was wondering what a typical dose is for a PI kid? She is on one pill of creon 6 three times a day. Is this a minimal dose or a high dose? I suspect her malabsorption is not that severe at only 12% - does anybody know what a typical malabsorption percentage is for PI?
I appreciate so much having a place where I can post a question to an experienced group of people. For anyone who has gone through a difficult diagnostic process, these are the things that help us survive - finding a support group is so important.

 

[2005CFmom]

It does seem like a rather small dose. I don't know how much she weighs, but my 100 lb daughter can take up to 5 creon 20 with each meal, add in a few for snacks and she is taking up to 20 creon 20 a day. You state she takes it 3 times a day, is this at each meal? Creon needs to be taken when she eats to be effective. Foods higher in fat/protein will require more enzymes than sugar/carb foods. Since you said that it seemed to be working, maybe 1 pill with each meal is a good start. But ask the doctor if you can increase it to 2 if the meal is higher in fat/protein.

 

[2005CFmom]

It does seem like a rather small dose. I don't know how much she weighs, but my 100 lb daughter can take up to 5 creon 20 with each meal, add in a few for snacks and she is taking up to 20 creon 20 a day. You state she takes it 3 times a day, is this at each meal? Creon needs to be taken when she eats to be effective. Foods higher in fat/protein will require more enzymes than sugar/carb foods. Since you said that it seemed to be working, maybe 1 pill with each meal is a good start. But ask the doctor if you can increase it to 2 if the meal is higher in fat/protein.

 

[livinglovinggrace]

Hello

I am unsure how old your daughter is so I can't really comment on what the dose is like for her particular size/age/maximum however that doesn't seem quite right to me for someone who is PI. As CFmom ^ said creon needs to be taken with food or meals as it replaces the natural enzymes the body would usually produce. Usually once the strength of the creon needed is determined there is a formula for how many capsules you take per grams of fat in the food. For example I take creon 10, 000 and take one capsule/ 5 grams of fat in the food I am consuming - granted I am an adult (though have been on this dose since I was little). Creon is usually taken with ALL food, not just bigger meals in CF patients, although you will need to work out what is best for your child.

It might seem confusing and overwhelming right now but once you have worked out the strength needed it really dose become second nature. Good luck.

 

[livinglovinggrace]

Hello

I am unsure how old your daughter is so I can't really comment on what the dose is like for her particular size/age/maximum however that doesn't seem quite right to me for someone who is PI. As CFmom ^ said creon needs to be taken with food or meals as it replaces the natural enzymes the body would usually produce. Usually once the strength of the creon needed is determined there is a formula for how many capsules you take per grams of fat in the food. For example I take creon 10, 000 and take one capsule/ 5 grams of fat in the food I am consuming - granted I am an adult (though have been on this dose since I was little). Creon is usually taken with ALL food, not just bigger meals in CF patients, although you will need to work out what is best for your child.

It might seem confusing and overwhelming right now but once you have worked out the strength needed it really dose become second nature. Good luck.

 

[jmom]

Thank you to the two of you for your helpful advice! She takes one creon 6 before each of the three main meals. From what you are saying, this sounds like a minimal dose. You know, it's interesting, but today I was gone all day and forgot to tell her to take her pills (we'll get used to this routine eventually!) and when I got home, bless her heart, there was a note on my kitchen counter from her (she's at that adorable 9 year old age between little girl and young adult) and it said, "Mom - all FLOATIES today. Love, Jessica" (That's our code word for bad fatty stools that float.) So here's my question - if a dose or two of creon is skipped, does a person see an immediate effect of that, or is it the type of medicine that takes a couple of days to get into the system and a couple of days to get out of the system? Thanks again, really appreciate the advice!

 

[jmom]

Thank you to the two of you for your helpful advice! She takes one creon 6 before each of the three main meals. From what you are saying, this sounds like a minimal dose. You know, it's interesting, but today I was gone all day and forgot to tell her to take her pills (we'll get used to this routine eventually!) and when I got home, bless her heart, there was a note on my kitchen counter from her (she's at that adorable 9 year old age between little girl and young adult) and it said, "Mom - all FLOATIES today. Love, Jessica" (That's our code word for bad fatty stools that float.) So here's my question - if a dose or two of creon is skipped, does a person see an immediate effect of that, or is it the type of medicine that takes a couple of days to get into the system and a couple of days to get out of the system? Thanks again, really appreciate the advice!

 

[Ratatosk]

I can tell if DS didn't get his enzymes or get enough enzymes as they're usually floating, lighter orangish color and break apart easily when I flush the toilet. When DS eats something that's higher in fat, such as movie popcorn feels like I'm just handing out enzymes like candy, otherwise stools are very loose usually a few hours later or the next day. At thanksgiving, he at 4 Lindt truffles without our knowledge, without enzymes and had very loose stools and stomach upset the thru the next morning.

 

[Ratatosk]

I can tell if DS didn't get his enzymes or get enough enzymes as they're usually floating, lighter orangish color and break apart easily when I flush the toilet. When DS eats something that's higher in fat, such as movie popcorn feels like I'm just handing out enzymes like candy, otherwise stools are very loose usually a few hours later or the next day. At thanksgiving, he at 4 Lindt truffles without our knowledge, without enzymes and had very loose stools and stomach upset the thru the next morning.

 

[Printer]

As someone who is 100% PI, let me join in. First she needs to be seen by a CYSTIC FIBROSIS GASTROLOGIST. If you can't find one then a CYSTIC FIBROSIS INTERNIST.

The determination of the proper dosage of Pantreatic Enzyme is not cast in stone, rather it is a trial and error approach. You need to work very closely with her Doctor in finding the optimum dosage and this will take some time. Be patient.

Bill

 

[Printer]

As someone who is 100% PI, let me join in. First she needs to be seen by a CYSTIC FIBROSIS GASTROLOGIST. If you can't find one then a CYSTIC FIBROSIS INTERNIST.

The determination of the proper dosage of Pantreatic Enzyme is not cast in stone, rather it is a trial and error approach. You need to work very closely with her Doctor in finding the optimum dosage and this will take some time. Be patient.

Bill

 

[Printer]

Not that is directly revelant to your DD but I take ten (10) Creon 24 with EVERY meal AND SNACK. If I don't I will have abdominal discomfort and gas within four hours.

If she is eating ANY snacks, without Creon, she will definatly have "floaties" and is voiding the value of the "test".

Much like a Primary Care Physician performing BRAIN SURGERY, would be out of their league, I believe your Doctor MAY also be out of his/her league in this matter.

Bill

 

[Printer]

Not that is directly revelant to your DD but I take ten (10) Creon 24 with EVERY meal AND SNACK. If I don't I will have abdominal discomfort and gas within four hours.

If she is eating ANY snacks, without Creon, she will definatly have "floaties" and is voiding the value of the "test".

Much like a Primary Care Physician performing BRAIN SURGERY, would be out of their league, I believe your Doctor MAY also be out of his/her league in this matter.

Bill

 

[jmom]

Thanks, Ratotask - you helped me understand the timing and cause/effect of all of this, and printer, I really appreciate your advice. It seems my daughter is taking a really small dose compared to you. You are correct that if we really are going to do this "trial of creon" the right way, it is tricky and needs to be worked out correctly.

 

[jmom]

Thanks, Ratotask - you helped me understand the timing and cause/effect of all of this, and printer, I really appreciate your advice. It seems my daughter is taking a really small dose compared to you. You are correct that if we really are going to do this "trial of creon" the right way, it is tricky and needs to be worked out correctly.

 

[Ratatosk]

When DS was an infant, we were given a guideline in terms of how many enzymes to give him with each bottle and based on his diapers, as he began to eat more, we'd increase his enzymes gradually by half a capsule.

Now that he's older we know that he usually has 7-8 creon 12 with meals, 4 for snacks; however, on the weekends, he's a big snacker and sometimes it seems as if all he does is eat, so after about 20-30 minutes, I'll give him a couple more. With movie popcorn, I was shocked to hear that 1 cup contained 900 calories, so no wonder DS needed more enzymes.

My MIL is a nurse and struggles with the idea of giving DS too many enzymes, and we're constantly reminding her that she doesn't need to worry about that.

 

[Ratatosk]

When DS was an infant, we were given a guideline in terms of how many enzymes to give him with each bottle and based on his diapers, as he began to eat more, we'd increase his enzymes gradually by half a capsule.

Now that he's older we know that he usually has 7-8 creon 12 with meals, 4 for snacks; however, on the weekends, he's a big snacker and sometimes it seems as if all he does is eat, so after about 20-30 minutes, I'll give him a couple more. With movie popcorn, I was shocked to hear that 1 cup contained 900 calories, so no wonder DS needed more enzymes.

My MIL is a nurse and struggles with the idea of giving DS too many enzymes, and we're constantly reminding her that she doesn't need to worry about that.

 

[CJPsMom]

My son will be 15 months next week and takes <em>18</em> creon 6 daily. He's completely pancreatic insufficient and only weighs 22 pounds. Given those parameters, your dosage for a 9 year old sounds very, very low.

 

[CJPsMom]

My son will be 15 months next week and takes <em>18</em> creon 6 daily. He's completely pancreatic insufficient and only weighs 22 pounds. Given those parameters, your dosage for a 9 year old sounds very, very low.