Enzymes and the oil slick

K

kitomd21

New member
Thought the title would catch somebody's attention! <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'm very frustrated with finding an effective enzyme formulation for my daughter. She's done "well" with Pancrease (waiting for it to become available...where are you Pancreaze?!). We're currently trying her on Zenpep, but there is a LOT of noticeable oil in her stools. The first day or two on Zenpep seemed like it would be fine for her - more formed stools than on Pancrease. Now she's back to her normal goo poo. We've tried her on Creon, but it was terrible for her.

I truly am frightened about her nutrition. We've been administering her enzymes as advised yet they appear to be minimally effective at times. Is the oil separation something that any of you have experienced while still maintaining adequate weight? She's due to see her dietician soon...but I'm mystified as to why enzymes are such a problem for her. Her last weight:length % was in the 60th percentile, but I think she's dropped below. We faithfully achieve the recommended intake of 1500 calories/day. So frustrating.
 
K

kitomd21

New member
Thought the title would catch somebody's attention! <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'm very frustrated with finding an effective enzyme formulation for my daughter. She's done "well" with Pancrease (waiting for it to become available...where are you Pancreaze?!). We're currently trying her on Zenpep, but there is a LOT of noticeable oil in her stools. The first day or two on Zenpep seemed like it would be fine for her - more formed stools than on Pancrease. Now she's back to her normal goo poo. We've tried her on Creon, but it was terrible for her.

I truly am frightened about her nutrition. We've been administering her enzymes as advised yet they appear to be minimally effective at times. Is the oil separation something that any of you have experienced while still maintaining adequate weight? She's due to see her dietician soon...but I'm mystified as to why enzymes are such a problem for her. Her last weight:length % was in the 60th percentile, but I think she's dropped below. We faithfully achieve the recommended intake of 1500 calories/day. So frustrating.
 
K

kitomd21

New member
Thought the title would catch somebody's attention! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />I'm very frustrated with finding an effective enzyme formulation for my daughter. She's done "well" with Pancrease (waiting for it to become available...where are you Pancreaze?!). We're currently trying her on Zenpep, but there is a LOT of noticeable oil in her stools. The first day or two on Zenpep seemed like it would be fine for her - more formed stools than on Pancrease. Now she's back to her normal goo poo. We've tried her on Creon, but it was terrible for her.
<br />
<br />I truly am frightened about her nutrition. We've been administering her enzymes as advised yet they appear to be minimally effective at times. Is the oil separation something that any of you have experienced while still maintaining adequate weight? She's due to see her dietician soon...but I'm mystified as to why enzymes are such a problem for her. Her last weight:length % was in the 60th percentile, but I think she's dropped below. We faithfully achieve the recommended intake of 1500 calories/day. So frustrating.
 
H

hmw

New member
Emily does better with some fats than others. Have you experimented with how she gets her calories, i.e. tried foods rich in mct fat instead of some of the other fats? MCT is easier to absorb than some of the others. Milkfat vs. oils vs. high fat/high cal meats... all are absorbed differently by different people with cf. Some kids do better with their enzymes spread out throughout a meal if they tend to take a while to eat, too. Have you tried an antacid? These can also help the enzymes work better.

Emily still has greasy stools & floaters on occasion, but not all the time. They are markedly improved over where they were 2yrs ago starting enzymes. I doubt she'll ever have 'normal all the time' stools but we have achieved something much better than what it was. I do know that adding Prevacid did make a big difference, too.

I hope her weight/length hasn't dropped and you are able to figure out more to help her.

I truly hope the Pancreaze is available for you soon. This enzyme situation has been a DISASTER, with the enzyme manufacturers and FDA all acting very irresponsibly in how it was handled. Why did they all wait till the last minute for this?!?! Creon was approved nearly a year before the deadline and on the shelves w/ a good 9mo to spare (we had our 1st bottle of reformulated Creon in hand right around 8/1/09)... don't tell me the others couldn't have done the same had they tried hard enough. SO many people are suffering because of this.... all the threads of people experiencing trouble due to this are so frustrating for me to see. <img src="i/expressions/face-icon-small-mad.gif" border="0">
 
H

hmw

New member
Emily does better with some fats than others. Have you experimented with how she gets her calories, i.e. tried foods rich in mct fat instead of some of the other fats? MCT is easier to absorb than some of the others. Milkfat vs. oils vs. high fat/high cal meats... all are absorbed differently by different people with cf. Some kids do better with their enzymes spread out throughout a meal if they tend to take a while to eat, too. Have you tried an antacid? These can also help the enzymes work better.

Emily still has greasy stools & floaters on occasion, but not all the time. They are markedly improved over where they were 2yrs ago starting enzymes. I doubt she'll ever have 'normal all the time' stools but we have achieved something much better than what it was. I do know that adding Prevacid did make a big difference, too.

I hope her weight/length hasn't dropped and you are able to figure out more to help her.

I truly hope the Pancreaze is available for you soon. This enzyme situation has been a DISASTER, with the enzyme manufacturers and FDA all acting very irresponsibly in how it was handled. Why did they all wait till the last minute for this?!?! Creon was approved nearly a year before the deadline and on the shelves w/ a good 9mo to spare (we had our 1st bottle of reformulated Creon in hand right around 8/1/09)... don't tell me the others couldn't have done the same had they tried hard enough. SO many people are suffering because of this.... all the threads of people experiencing trouble due to this are so frustrating for me to see. <img src="i/expressions/face-icon-small-mad.gif" border="0">
 
H

hmw

New member
Emily does better with some fats than others. Have you experimented with how she gets her calories, i.e. tried foods rich in mct fat instead of some of the other fats? MCT is easier to absorb than some of the others. Milkfat vs. oils vs. high fat/high cal meats... all are absorbed differently by different people with cf. Some kids do better with their enzymes spread out throughout a meal if they tend to take a while to eat, too. Have you tried an antacid? These can also help the enzymes work better.
<br />
<br />Emily still has greasy stools & floaters on occasion, but not all the time. They are markedly improved over where they were 2yrs ago starting enzymes. I doubt she'll ever have 'normal all the time' stools but we have achieved something much better than what it was. I do know that adding Prevacid did make a big difference, too.
<br />
<br />I hope her weight/length hasn't dropped and you are able to figure out more to help her.
<br />
<br />I truly hope the Pancreaze is available for you soon. This enzyme situation has been a DISASTER, with the enzyme manufacturers and FDA all acting very irresponsibly in how it was handled. Why did they all wait till the last minute for this?!?! Creon was approved nearly a year before the deadline and on the shelves w/ a good 9mo to spare (we had our 1st bottle of reformulated Creon in hand right around 8/1/09)... don't tell me the others couldn't have done the same had they tried hard enough. SO many people are suffering because of this.... all the threads of people experiencing trouble due to this are so frustrating for me to see. <img src="i/expressions/face-icon-small-mad.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
Pancreaze has been available from the manufacturer since the end of July. Unfortunately for us BCBS won't cover it as a formulary. We switched to creon and fortunately DS has done fine with it..

Have you tried increasing the enzymes by half a capsule or so? Our doctor has never been all that stringent on DS having to take x number of capsules and ONLY that many. So we've always based # of enzymes on output and gradually increased. DS is also a big snacker, so even though his script says 1-2 creon for a snack, he grazes for quite a long time AND it's high calories stuff such as peanuts or sunflower seeds. So I'm forever adding an extra capsule.
 
R

Ratatosk

Administrator
Staff member
Pancreaze has been available from the manufacturer since the end of July. Unfortunately for us BCBS won't cover it as a formulary. We switched to creon and fortunately DS has done fine with it..

Have you tried increasing the enzymes by half a capsule or so? Our doctor has never been all that stringent on DS having to take x number of capsules and ONLY that many. So we've always based # of enzymes on output and gradually increased. DS is also a big snacker, so even though his script says 1-2 creon for a snack, he grazes for quite a long time AND it's high calories stuff such as peanuts or sunflower seeds. So I'm forever adding an extra capsule.
 
R

Ratatosk

Administrator
Staff member
Pancreaze has been available from the manufacturer since the end of July. Unfortunately for us BCBS won't cover it as a formulary. We switched to creon and fortunately DS has done fine with it..
<br />
<br />Have you tried increasing the enzymes by half a capsule or so? Our doctor has never been all that stringent on DS having to take x number of capsules and ONLY that many. So we've always based # of enzymes on output and gradually increased. DS is also a big snacker, so even though his script says 1-2 creon for a snack, he grazes for quite a long time AND it's high calories stuff such as peanuts or sunflower seeds. So I'm forever adding an extra capsule.
 
R

Rebjane

Super Moderator
Do you see a nutritionist at CF clinic. We see our every 3 months and she is the enzyme expert..I always go to her to help with enzyme adjustment according to weight and poops.

Does your daughter take an acid blocker like Zantac or Prevacid? It works to help the enzymes work better.

Also, my daughter takes Culturelle every day. It really helps with her digestion.
 
R

Rebjane

Super Moderator
Do you see a nutritionist at CF clinic. We see our every 3 months and she is the enzyme expert..I always go to her to help with enzyme adjustment according to weight and poops.

Does your daughter take an acid blocker like Zantac or Prevacid? It works to help the enzymes work better.

Also, my daughter takes Culturelle every day. It really helps with her digestion.
 
R

Rebjane

Super Moderator
Do you see a nutritionist at CF clinic. We see our every 3 months and she is the enzyme expert..I always go to her to help with enzyme adjustment according to weight and poops.
<br />
<br />Does your daughter take an acid blocker like Zantac or Prevacid? It works to help the enzymes work better.
<br />
<br />Also, my daughter takes Culturelle every day. It really helps with her digestion.
 
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