ENZMYME QUESTION

CFMOM65

New member
hi i am having a little confusion on the enzymes , my daughter now 17 mnths old had rectal prolapse when she was 9 mnths old due to the dr didn't have her taking enough enzymes it took 3 wks in one hospital and finally i found a surgeon that new what he was dealing w / at another hospital - she was totally prolapsed and it would not go back in. i fought to get her to see that surgeon and won almost after a nervous breakdown. iwas so glad i found him because she was in a downward spiral, she was failure to thrive she also caught in the hospital pseudonomas , pneumonia, sinus inf, and had to have a blood transfusion and a meconium illeus equivalent. this surgeon was a miracle , an angel he was confident in what he did and he cared about my daughter he performed a procedure where he put her under gen anesthesia cleaned her bowels out looked for any polyps wich there was none he then put the rectal muscle back in and injected something that creates scar tissue he also put an epidural in and sedated her in picu for 3 days and on the 4th day the epidural was taken out and she woke up and we waited to see what would happen it was a true miracle it has never prolapsed again and her health has never been better shes in the 75th percintile for weight she does have contipation issues. when all that happened the drs told me that she needed to intake 48 - 70,000 units of lipase a day, the way they explained it was that every pancrease mt 4 caps had 4,000 units in it she doesn't like to snack she eats breakfast , lunch , dinner and a bed time snack and she takes 4 caps with each feeding my question is she doesn't always want her bedtime snack but imake her eat it anyways because iwant to make sure she gets enough enzymes in a day after the whole experience i don't ever want her to go thru that again, i just want to get some opinions from everyone if u think not having those exta 4 enzymes at night will hurt ?
 

CFMOM65

New member
hi i am having a little confusion on the enzymes , my daughter now 17 mnths old had rectal prolapse when she was 9 mnths old due to the dr didn't have her taking enough enzymes it took 3 wks in one hospital and finally i found a surgeon that new what he was dealing w / at another hospital - she was totally prolapsed and it would not go back in. i fought to get her to see that surgeon and won almost after a nervous breakdown. iwas so glad i found him because she was in a downward spiral, she was failure to thrive she also caught in the hospital pseudonomas , pneumonia, sinus inf, and had to have a blood transfusion and a meconium illeus equivalent. this surgeon was a miracle , an angel he was confident in what he did and he cared about my daughter he performed a procedure where he put her under gen anesthesia cleaned her bowels out looked for any polyps wich there was none he then put the rectal muscle back in and injected something that creates scar tissue he also put an epidural in and sedated her in picu for 3 days and on the 4th day the epidural was taken out and she woke up and we waited to see what would happen it was a true miracle it has never prolapsed again and her health has never been better shes in the 75th percintile for weight she does have contipation issues. when all that happened the drs told me that she needed to intake 48 - 70,000 units of lipase a day, the way they explained it was that every pancrease mt 4 caps had 4,000 units in it she doesn't like to snack she eats breakfast , lunch , dinner and a bed time snack and she takes 4 caps with each feeding my question is she doesn't always want her bedtime snack but imake her eat it anyways because iwant to make sure she gets enough enzymes in a day after the whole experience i don't ever want her to go thru that again, i just want to get some opinions from everyone if u think not having those exta 4 enzymes at night will hurt ?
 

CFMOM65

New member
hi i am having a little confusion on the enzymes , my daughter now 17 mnths old had rectal prolapse when she was 9 mnths old due to the dr didn't have her taking enough enzymes it took 3 wks in one hospital and finally i found a surgeon that new what he was dealing w / at another hospital - she was totally prolapsed and it would not go back in. i fought to get her to see that surgeon and won almost after a nervous breakdown. iwas so glad i found him because she was in a downward spiral, she was failure to thrive she also caught in the hospital pseudonomas , pneumonia, sinus inf, and had to have a blood transfusion and a meconium illeus equivalent. this surgeon was a miracle , an angel he was confident in what he did and he cared about my daughter he performed a procedure where he put her under gen anesthesia cleaned her bowels out looked for any polyps wich there was none he then put the rectal muscle back in and injected something that creates scar tissue he also put an epidural in and sedated her in picu for 3 days and on the 4th day the epidural was taken out and she woke up and we waited to see what would happen it was a true miracle it has never prolapsed again and her health has never been better shes in the 75th percintile for weight she does have contipation issues. when all that happened the drs told me that she needed to intake 48 - 70,000 units of lipase a day, the way they explained it was that every pancrease mt 4 caps had 4,000 units in it she doesn't like to snack she eats breakfast , lunch , dinner and a bed time snack and she takes 4 caps with each feeding my question is she doesn't always want her bedtime snack but imake her eat it anyways because iwant to make sure she gets enough enzymes in a day after the whole experience i don't ever want her to go thru that again, i just want to get some opinions from everyone if u think not having those exta 4 enzymes at night will hurt ?
 

kybert

New member
enzymes are only needed with food. they do not need to be taken x times a day. if she does not have a bedtime snack then she does not need the enzymes at that time. she does not have to be force fed to reach the doctors 70000 per day request, which i must add is quite bizarre. the dosage is dependant on how much/what she eats. it is not a set daily dose. making her eat more so you can give her more enzymes isnt beneficial to her digestive system and wont prevent any digestive complaints. i think perhaps the doctors assumed that your daughter always had breakfast, lunch, dinner and a snack without fail and thats why they brought up that estimation. either way, less food = less enzymes.
 

kybert

New member
enzymes are only needed with food. they do not need to be taken x times a day. if she does not have a bedtime snack then she does not need the enzymes at that time. she does not have to be force fed to reach the doctors 70000 per day request, which i must add is quite bizarre. the dosage is dependant on how much/what she eats. it is not a set daily dose. making her eat more so you can give her more enzymes isnt beneficial to her digestive system and wont prevent any digestive complaints. i think perhaps the doctors assumed that your daughter always had breakfast, lunch, dinner and a snack without fail and thats why they brought up that estimation. either way, less food = less enzymes.
 

kybert

New member
enzymes are only needed with food. they do not need to be taken x times a day. if she does not have a bedtime snack then she does not need the enzymes at that time. she does not have to be force fed to reach the doctors 70000 per day request, which i must add is quite bizarre. the dosage is dependant on how much/what she eats. it is not a set daily dose. making her eat more so you can give her more enzymes isnt beneficial to her digestive system and wont prevent any digestive complaints. i think perhaps the doctors assumed that your daughter always had breakfast, lunch, dinner and a snack without fail and thats why they brought up that estimation. either way, less food = less enzymes.
 

amber682

New member
I'm not positive on this, but I would think the docotrs want her on that many enzymes because that is how much she'd need to digest the amount of calories she eats. But if she eats less calories, because she doesn't have the night time snack, then she wouldn't need as many enzymes, I think.

Plus, if she just has the 3 meals a day with 4 enzymes each time, that's 48,000 unit anyways.

Or you could try to get her to eat the snack at a different time of day, or maybe substitute the snack with a nice high calorie shake?
 

amber682

New member
I'm not positive on this, but I would think the docotrs want her on that many enzymes because that is how much she'd need to digest the amount of calories she eats. But if she eats less calories, because she doesn't have the night time snack, then she wouldn't need as many enzymes, I think.

Plus, if she just has the 3 meals a day with 4 enzymes each time, that's 48,000 unit anyways.

Or you could try to get her to eat the snack at a different time of day, or maybe substitute the snack with a nice high calorie shake?
 

amber682

New member
I'm not positive on this, but I would think the docotrs want her on that many enzymes because that is how much she'd need to digest the amount of calories she eats. But if she eats less calories, because she doesn't have the night time snack, then she wouldn't need as many enzymes, I think.

Plus, if she just has the 3 meals a day with 4 enzymes each time, that's 48,000 unit anyways.

Or you could try to get her to eat the snack at a different time of day, or maybe substitute the snack with a nice high calorie shake?
 

grassisgreener

New member
As you know, enzyme doseage is really tricky, especially for little ones. I think the lipase range your doctor gave you might be based on her weight. If that is the case than you wouldn't want to give her more than 70k a day bc it could cause damage. That range is just that, a range. It does not mean that taking the top end of the range is better for her, you have to "experiment" to figure out what amount is best for her and remember that it depends on how much fat and protein she is eating (fat being the biggest factor). Taking too many enzmyes could make her constipated and not taking enough could make her constipated.

I know what the worry is like bc my daughter also had a prolapse and while she didn't need surgery (light sedation for 24 hours to keep it reduced) we DID NOT want to go through it again either! She does battle constipation quite often but it has gotten better now that she is older (4) and her eating patterns are more established which makes enzyme doseage easier. Still though, this morning we gave her the full meal dose of Creon and then she only ate about half of her normal meal amount...that probably means that she will want to eat more for lunch to make it up...which means more enzymes at lunch time??? So, we will give her her regular amount of lunchtime enzymes then if she wants to eat more food at lunch we will give her more enzymes during the meal. Does that make sense? I don't want to give her too many enzymes if she isn't going to need them.

Here is a really good article on CF Nutrition issues that I have read over and over. I use it to calculate my daughters enzymes according to her intake and it has really helped me sort things out for her enzyme doseage.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.healthsystem.virginia.edu/internet/digestive-health/nutritionarticles/goodinarticle.pdf
">http://www.healthsystem.virgin...les/goodinarticle.pdf
</a>
It is a long article but I have it saved to my computer (in case it is ever removed from the web) bc I find the information very useful.

Congrats on your daughter being so healthy now. She has shown that she can pull through an adverse situation and that is great! You will help her so much by doing this research for her now while she cannot do it for herself.
 

grassisgreener

New member
As you know, enzyme doseage is really tricky, especially for little ones. I think the lipase range your doctor gave you might be based on her weight. If that is the case than you wouldn't want to give her more than 70k a day bc it could cause damage. That range is just that, a range. It does not mean that taking the top end of the range is better for her, you have to "experiment" to figure out what amount is best for her and remember that it depends on how much fat and protein she is eating (fat being the biggest factor). Taking too many enzmyes could make her constipated and not taking enough could make her constipated.

I know what the worry is like bc my daughter also had a prolapse and while she didn't need surgery (light sedation for 24 hours to keep it reduced) we DID NOT want to go through it again either! She does battle constipation quite often but it has gotten better now that she is older (4) and her eating patterns are more established which makes enzyme doseage easier. Still though, this morning we gave her the full meal dose of Creon and then she only ate about half of her normal meal amount...that probably means that she will want to eat more for lunch to make it up...which means more enzymes at lunch time??? So, we will give her her regular amount of lunchtime enzymes then if she wants to eat more food at lunch we will give her more enzymes during the meal. Does that make sense? I don't want to give her too many enzymes if she isn't going to need them.

Here is a really good article on CF Nutrition issues that I have read over and over. I use it to calculate my daughters enzymes according to her intake and it has really helped me sort things out for her enzyme doseage.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.healthsystem.virginia.edu/internet/digestive-health/nutritionarticles/goodinarticle.pdf
">http://www.healthsystem.virgin...les/goodinarticle.pdf
</a>
It is a long article but I have it saved to my computer (in case it is ever removed from the web) bc I find the information very useful.

Congrats on your daughter being so healthy now. She has shown that she can pull through an adverse situation and that is great! You will help her so much by doing this research for her now while she cannot do it for herself.
 

grassisgreener

New member
As you know, enzyme doseage is really tricky, especially for little ones. I think the lipase range your doctor gave you might be based on her weight. If that is the case than you wouldn't want to give her more than 70k a day bc it could cause damage. That range is just that, a range. It does not mean that taking the top end of the range is better for her, you have to "experiment" to figure out what amount is best for her and remember that it depends on how much fat and protein she is eating (fat being the biggest factor). Taking too many enzmyes could make her constipated and not taking enough could make her constipated.

I know what the worry is like bc my daughter also had a prolapse and while she didn't need surgery (light sedation for 24 hours to keep it reduced) we DID NOT want to go through it again either! She does battle constipation quite often but it has gotten better now that she is older (4) and her eating patterns are more established which makes enzyme doseage easier. Still though, this morning we gave her the full meal dose of Creon and then she only ate about half of her normal meal amount...that probably means that she will want to eat more for lunch to make it up...which means more enzymes at lunch time??? So, we will give her her regular amount of lunchtime enzymes then if she wants to eat more food at lunch we will give her more enzymes during the meal. Does that make sense? I don't want to give her too many enzymes if she isn't going to need them.

Here is a really good article on CF Nutrition issues that I have read over and over. I use it to calculate my daughters enzymes according to her intake and it has really helped me sort things out for her enzyme doseage.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.healthsystem.virginia.edu/internet/digestive-health/nutritionarticles/goodinarticle.pdf
">http://www.healthsystem.virgin...les/goodinarticle.pdf
</a>
It is a long article but I have it saved to my computer (in case it is ever removed from the web) bc I find the information very useful.

Congrats on your daughter being so healthy now. She has shown that she can pull through an adverse situation and that is great! You will help her so much by doing this research for her now while she cannot do it for herself.
 
T

tammykrumrey

Guest
I have found that enzyme dosage is sometimes a challenge, that is always changing, especially when our kids are little. There is really no set number that the child needs, it just depends on the child, how severe the PI is, the types of foods eaten, etc. My girls are not on the same type of enzymes, nor the same dosages. One is on Creon and one on Ultrase. We work with our dietician from CF clinic to get the best combination to help each of them grow as best we can. One daughter is in the 50% and one is at about 40%.

My girls don't always take X amount with a meal. I have to take into account how much fat and protein is in the meal or snack, and then make a decision as to how much enzyme they need. Sometimes the snack, like before dinner, is just a few pretzels and I will give them only one enzyme, not four like with a meal.

I have read here before of someone else whose doctor has the child taking enzymes even when not eating, and that would have me concerned. I was under the belief that the enzymes could cause some damage if taken too often without food?

My oldest daughter also had problems with rectal prolapse. That is how come she was tested for CF at 14 months old. We also went throught the surgical procedure that it sounds like your daughter went through, although it had to be done at 15 months, again at 17 months and again at three years old. She had so many prolapses I could not even begin to count them. She had one more at about four years old that corrected itself and thank God none since then!! She is now nine.
 
T

tammykrumrey

Guest
I have found that enzyme dosage is sometimes a challenge, that is always changing, especially when our kids are little. There is really no set number that the child needs, it just depends on the child, how severe the PI is, the types of foods eaten, etc. My girls are not on the same type of enzymes, nor the same dosages. One is on Creon and one on Ultrase. We work with our dietician from CF clinic to get the best combination to help each of them grow as best we can. One daughter is in the 50% and one is at about 40%.

My girls don't always take X amount with a meal. I have to take into account how much fat and protein is in the meal or snack, and then make a decision as to how much enzyme they need. Sometimes the snack, like before dinner, is just a few pretzels and I will give them only one enzyme, not four like with a meal.

I have read here before of someone else whose doctor has the child taking enzymes even when not eating, and that would have me concerned. I was under the belief that the enzymes could cause some damage if taken too often without food?

My oldest daughter also had problems with rectal prolapse. That is how come she was tested for CF at 14 months old. We also went throught the surgical procedure that it sounds like your daughter went through, although it had to be done at 15 months, again at 17 months and again at three years old. She had so many prolapses I could not even begin to count them. She had one more at about four years old that corrected itself and thank God none since then!! She is now nine.
 
T

tammykrumrey

Guest
I have found that enzyme dosage is sometimes a challenge, that is always changing, especially when our kids are little. There is really no set number that the child needs, it just depends on the child, how severe the PI is, the types of foods eaten, etc. My girls are not on the same type of enzymes, nor the same dosages. One is on Creon and one on Ultrase. We work with our dietician from CF clinic to get the best combination to help each of them grow as best we can. One daughter is in the 50% and one is at about 40%.

My girls don't always take X amount with a meal. I have to take into account how much fat and protein is in the meal or snack, and then make a decision as to how much enzyme they need. Sometimes the snack, like before dinner, is just a few pretzels and I will give them only one enzyme, not four like with a meal.

I have read here before of someone else whose doctor has the child taking enzymes even when not eating, and that would have me concerned. I was under the belief that the enzymes could cause some damage if taken too often without food?

My oldest daughter also had problems with rectal prolapse. That is how come she was tested for CF at 14 months old. We also went throught the surgical procedure that it sounds like your daughter went through, although it had to be done at 15 months, again at 17 months and again at three years old. She had so many prolapses I could not even begin to count them. She had one more at about four years old that corrected itself and thank God none since then!! She is now nine.
 

Ratatosk

Administrator
Staff member
It's my understanding that taking way too many enzymes can cause strictures in the colon. With infants there can be issues with too many enzymes causing a big red monkey butt.

We were probably not giving DS enough enzymes when he was a baby, but there were times when we'd give him enzymes and then he wouldn't eat. He was no worse for the wear, but it wasn't an all day every day thing. We usually had a set number we gave him with his bottle of formula -- think it was 2 1/2-3 pancrease MT4s and he drank about 3-4 ounces. When he first started eating solids and snacking, we'd usually see how much he actually ate -- last night he grabbed a package of potato sticks off the shelf and started eating a couple, so I gave him an enzyme -- later I noticed he was pouring the container into his mouth, so I gave him a couple more enzymes with some milk. Just never quite know how much they're going to eat.
 

Ratatosk

Administrator
Staff member
It's my understanding that taking way too many enzymes can cause strictures in the colon. With infants there can be issues with too many enzymes causing a big red monkey butt.

We were probably not giving DS enough enzymes when he was a baby, but there were times when we'd give him enzymes and then he wouldn't eat. He was no worse for the wear, but it wasn't an all day every day thing. We usually had a set number we gave him with his bottle of formula -- think it was 2 1/2-3 pancrease MT4s and he drank about 3-4 ounces. When he first started eating solids and snacking, we'd usually see how much he actually ate -- last night he grabbed a package of potato sticks off the shelf and started eating a couple, so I gave him an enzyme -- later I noticed he was pouring the container into his mouth, so I gave him a couple more enzymes with some milk. Just never quite know how much they're going to eat.
 

Ratatosk

Administrator
Staff member
It's my understanding that taking way too many enzymes can cause strictures in the colon. With infants there can be issues with too many enzymes causing a big red monkey butt.

We were probably not giving DS enough enzymes when he was a baby, but there were times when we'd give him enzymes and then he wouldn't eat. He was no worse for the wear, but it wasn't an all day every day thing. We usually had a set number we gave him with his bottle of formula -- think it was 2 1/2-3 pancrease MT4s and he drank about 3-4 ounces. When he first started eating solids and snacking, we'd usually see how much he actually ate -- last night he grabbed a package of potato sticks off the shelf and started eating a couple, so I gave him an enzyme -- later I noticed he was pouring the container into his mouth, so I gave him a couple more enzymes with some milk. Just never quite know how much they're going to eat.
 

CFMOM65

New member
thanks for all the inputs its nice to know that some of you have gone thru the the same situation, it makes me feel that i'm not the only one. sometimes you feel like your the only one but then you come here and you know your not the only one thanks so much

cfmom


daughter 9 yrs old w/o cf and baby girl 17 mnths w/ cf
 

CFMOM65

New member
thanks for all the inputs its nice to know that some of you have gone thru the the same situation, it makes me feel that i'm not the only one. sometimes you feel like your the only one but then you come here and you know your not the only one thanks so much

cfmom


daughter 9 yrs old w/o cf and baby girl 17 mnths w/ cf
 
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