Pancreatic Insufficiency

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mom2caseyafrica

New member
When my daughter was first diagnosed with CF they put her on creon enzymes for pancreatic insufficiency. They attempted to do a sweat test with no luck. She started growing and is doing a lot better. She has doubled her weight at birth, at least. They redid the sweat test upon my request. The numbers said 13. Strange. Then she cultured staph and got a cold. They put her on antibiotics. She is getting better. This morning I got a call saying her stool came back and her pancreas is now working, which means no more enzymes. Very strange. Has anyone else experienced this where they start out with pancreatic insufficiency but then the pancreas started working?
 
M

mom2caseyafrica

New member
When my daughter was first diagnosed with CF they put her on creon enzymes for pancreatic insufficiency. They attempted to do a sweat test with no luck. She started growing and is doing a lot better. She has doubled her weight at birth, at least. They redid the sweat test upon my request. The numbers said 13. Strange. Then she cultured staph and got a cold. They put her on antibiotics. She is getting better. This morning I got a call saying her stool came back and her pancreas is now working, which means no more enzymes. Very strange. Has anyone else experienced this where they start out with pancreatic insufficiency but then the pancreas started working?
 
M

mom2caseyafrica

New member
When my daughter was first diagnosed with CF they put her on creon enzymes for pancreatic insufficiency. They attempted to do a sweat test with no luck. She started growing and is doing a lot better. She has doubled her weight at birth, at least. They redid the sweat test upon my request. The numbers said 13. Strange. Then she cultured staph and got a cold. They put her on antibiotics. She is getting better. This morning I got a call saying her stool came back and her pancreas is now working, which means no more enzymes. Very strange. Has anyone else experienced this where they start out with pancreatic insufficiency but then the pancreas started working?
 
Y

ymikhale

New member
yes it happened to my dd as well. When she was first tested she had fecal elastase of 60, very low. Was put on enzymes. A year later she was at 449 (200 is considered PS) and enzymes were stopped.

Someone on this forum mentioned that little CFer's pancreas sometimes need to be "jumpstarted", meaning the pancreatic status flips from PI to PS before stabilizing.
 
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ymikhale

New member
yes it happened to my dd as well. When she was first tested she had fecal elastase of 60, very low. Was put on enzymes. A year later she was at 449 (200 is considered PS) and enzymes were stopped.

Someone on this forum mentioned that little CFer's pancreas sometimes need to be "jumpstarted", meaning the pancreatic status flips from PI to PS before stabilizing.
 
Y

ymikhale

New member
yes it happened to my dd as well. When she was first tested she had fecal elastase of 60, very low. Was put on enzymes. A year later she was at 449 (200 is considered PS) and enzymes were stopped.
<br />
<br />Someone on this forum mentioned that little CFer's pancreas sometimes need to be "jumpstarted", meaning the pancreatic status flips from PI to PS before stabilizing.
 
Y

ymikhale

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2caseyafrica</b></i>

What do PI and PS mean? how is your dd doing now? i dont know what the numbers were for either time. I will have to ask.</end quote></div>

PI=pancreatic insufficient; PS=pancreatic sufficient. My dd is doing fine, but know that pancreatic status can change throughout life as pancreas get more damaged.
 
Y

ymikhale

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2caseyafrica</b></i>

What do PI and PS mean? how is your dd doing now? i dont know what the numbers were for either time. I will have to ask.</end quote>

PI=pancreatic insufficient; PS=pancreatic sufficient. My dd is doing fine, but know that pancreatic status can change throughout life as pancreas get more damaged.
 
Y

ymikhale

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2caseyafrica</b></i>
<br />
<br />What do PI and PS mean? how is your dd doing now? i dont know what the numbers were for either time. I will have to ask.</end quote>
<br />
<br />PI=pancreatic insufficient; PS=pancreatic sufficient. My dd is doing fine, but know that pancreatic status can change throughout life as pancreas get more damaged.
 
M

mom2caseyafrica

New member
Oh, Thank you. Thats good to hear. And I completely understand that this disease is progressive and will worsen over time. I am just so glad that she doesnt have to have enzymes for the time being. Thank you for your information, its good to hear other peoples experiences so I can understand what to expect.
 
M

mom2caseyafrica

New member
Oh, Thank you. Thats good to hear. And I completely understand that this disease is progressive and will worsen over time. I am just so glad that she doesnt have to have enzymes for the time being. Thank you for your information, its good to hear other peoples experiences so I can understand what to expect.
 
M

mom2caseyafrica

New member
Oh, Thank you. Thats good to hear. And I completely understand that this disease is progressive and will worsen over time. I am just so glad that she doesnt have to have enzymes for the time being. Thank you for your information, its good to hear other peoples experiences so I can understand what to expect.
 
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