Jadens Story

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kayleesgrandma

New member
What a great story! I can't wait to show it to my granddaughter--she will have someone to identify with! Also her older brother, Jaykub, will appreciate Jaden's big brother. Thank you for posting this! Question--what kind of enzymes are you use? Kaylee uses Ultrase and her cf doctor doesn't want her to use more than 9 or 10 a day! He says he is worried about her pancreas being affected. How much does Jaden weigh? Maybe that is the reason. Thanks for your help.
 
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babyjaden2004

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kayleesgrandma</b></i>

What a great story! I can't wait to show it to my granddaughter--she will have someone to identify with! Also her older brother, Jaykub, will appreciate Jaden's big brother. Thank you for posting this! Question--what kind of enzymes are you use? Kaylee uses Ultrase and her cf doctor doesn't want her to use more than 9 or 10 a day! He says he is worried about her pancreas being affected. How much does Jaden weigh? Maybe that is the reason. Thanks for your help.</end quote></div>

She is on Pancrecarb MS-4 and we are up to 6 with every meal and snack. Last weight check was 26lbs we go this week for another one.
 
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babyjaden2004

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kayleesgrandma</b></i>

What a great story! I can't wait to show it to my granddaughter--she will have someone to identify with! Also her older brother, Jaykub, will appreciate Jaden's big brother. Thank you for posting this! Question--what kind of enzymes are you use? Kaylee uses Ultrase and her cf doctor doesn't want her to use more than 9 or 10 a day! He says he is worried about her pancreas being affected. How much does Jaden weigh? Maybe that is the reason. Thanks for your help.</end quote></div>

She is on Pancrecarb MS-4 and we are up to 6 with every meal and snack. Last weight check was 26lbs we go this week for another one.
 
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babyjaden2004

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kayleesgrandma</b></i>

What a great story! I can't wait to show it to my granddaughter--she will have someone to identify with! Also her older brother, Jaykub, will appreciate Jaden's big brother. Thank you for posting this! Question--what kind of enzymes are you use? Kaylee uses Ultrase and her cf doctor doesn't want her to use more than 9 or 10 a day! He says he is worried about her pancreas being affected. How much does Jaden weigh? Maybe that is the reason. Thanks for your help.</end quote></div>

She is on Pancrecarb MS-4 and we are up to 6 with every meal and snack. Last weight check was 26lbs we go this week for another one.
 
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izemmom

New member
Just wanted to add that we are on Panrecarb MS4's, too. We do 3 or 4 with a snack, depending on what it is and 5 with a meal or bottle. Emily weighs just over 18 pounds. I'm sure that doctors vary in thier opinion of how much is too much. Actually, our dietician someties seems to change her opinion from one visit to the next (aaarrrgh!) but I figure as long as her stools are consistent and she is gaining weight, then we must be doing something right. I do worry a little that we may be doing some long term damage to the pancreas if we are over dosing her, but for now we are doing as directed by our team! Its so hard to know if we are doing hte right thing, though.
 
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izemmom

New member
Just wanted to add that we are on Panrecarb MS4's, too. We do 3 or 4 with a snack, depending on what it is and 5 with a meal or bottle. Emily weighs just over 18 pounds. I'm sure that doctors vary in thier opinion of how much is too much. Actually, our dietician someties seems to change her opinion from one visit to the next (aaarrrgh!) but I figure as long as her stools are consistent and she is gaining weight, then we must be doing something right. I do worry a little that we may be doing some long term damage to the pancreas if we are over dosing her, but for now we are doing as directed by our team! Its so hard to know if we are doing hte right thing, though.
 
I

izemmom

New member
Just wanted to add that we are on Panrecarb MS4's, too. We do 3 or 4 with a snack, depending on what it is and 5 with a meal or bottle. Emily weighs just over 18 pounds. I'm sure that doctors vary in thier opinion of how much is too much. Actually, our dietician someties seems to change her opinion from one visit to the next (aaarrrgh!) but I figure as long as her stools are consistent and she is gaining weight, then we must be doing something right. I do worry a little that we may be doing some long term damage to the pancreas if we are over dosing her, but for now we are doing as directed by our team! Its so hard to know if we are doing hte right thing, though.
 
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LouLou

New member
Recently I was reviewing my blood work results with my doctor and when I asked him why my kidney numbers were a little off (high or low I can't remember) he said because of this and pointed to my long list of med's. Then the shocking part was when he pinpointed the pancreatic enzyme and said this is the roughest of all the med's I am on but of course reassured me that I should be taking them and that the damage that is done is very minor / nothing to react to really. I was surprised because I always thought the pancreatic enzyme was the drug to least worry about. It's amazing how you learn something new about cf even at my age very often.
 
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LouLou

New member
Recently I was reviewing my blood work results with my doctor and when I asked him why my kidney numbers were a little off (high or low I can't remember) he said because of this and pointed to my long list of med's. Then the shocking part was when he pinpointed the pancreatic enzyme and said this is the roughest of all the med's I am on but of course reassured me that I should be taking them and that the damage that is done is very minor / nothing to react to really. I was surprised because I always thought the pancreatic enzyme was the drug to least worry about. It's amazing how you learn something new about cf even at my age very often.
 
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LouLou

New member
Recently I was reviewing my blood work results with my doctor and when I asked him why my kidney numbers were a little off (high or low I can't remember) he said because of this and pointed to my long list of med's. Then the shocking part was when he pinpointed the pancreatic enzyme and said this is the roughest of all the med's I am on but of course reassured me that I should be taking them and that the damage that is done is very minor / nothing to react to really. I was surprised because I always thought the pancreatic enzyme was the drug to least worry about. It's amazing how you learn something new about cf even at my age very often.
 
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LouLou

New member
oh in case anyone's curious...
I take 3 Ultrase MT20 with meals. 1-2 with snacks if there's fat present. I know I should take them even with an apple but I just don't feel the need.
 
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LouLou

New member
oh in case anyone's curious...
I take 3 Ultrase MT20 with meals. 1-2 with snacks if there's fat present. I know I should take them even with an apple but I just don't feel the need.
 
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LouLou

New member
oh in case anyone's curious...
I take 3 Ultrase MT20 with meals. 1-2 with snacks if there's fat present. I know I should take them even with an apple but I just don't feel the need.
 
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amber682

New member
I too was told no need for an enzymes with an apple (no fat I guess?)<img src="i/expressions/face-icon-small-smile.gif" border="0">

Edited to add: my sons doctor said too many enzymes can cause problems such as colon strictures but never mentioned anything about the pancreas or kidneys being affected. I learn something new on this site almost every day!

Next appt. we have to have a discussion about enzymes anyway, I think they need to be increased due to very poor weight gain and very light-colored, very bulky stools coming out the top and legs of the diaper. They're also very smushy, like sticky frosting instead of formed. The doctors are also worried about the weight issue (no gain in like 6 mos.) since he hasn't had problems with weight in the past and was always over the 50th percentile. But they don't want to increase his enzymes because they're not happening more frequently (not more than once a day) and they say he's already on a "pretty high dose for such a little guy". He takes 3 Creon 10's and weighs about 26 lbs. I'm sticking to my guns and think they should be increased, but they talked to me about the risk of stricture.

Sorry that sort of sent me off on a vent! Sorry to steal your thread!
 
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