Severe pacreatic insufficiency

S

Seana30

New member
Courtney, 15 years old, has severe pancreatic insufficiency. She has had weight issues since birth although she was not diagnosed with CF till she was 10.

She is 5 feet 4 inches tall and weighs 94 pounds.

As we speak we are monitoring her blood sugars because she has been showing some symptoms of CFRD.

We just stay on Courtneys case about taking her enzymes (since she has hit her teens she has become somewhat noncomplaint with her meds)and keep a close eye on her weight.

I do have one question for the CFers of this site dealing with this issue......

How do you keep the large calorie intake when you have CFRD? I would think this would be a very hard balance between keeping a high caloric intake, but watching sugar and carb intake?!

Seana
 
S

Seana30

New member
Courtney, 15 years old, has severe pancreatic insufficiency. She has had weight issues since birth although she was not diagnosed with CF till she was 10.

She is 5 feet 4 inches tall and weighs 94 pounds.

As we speak we are monitoring her blood sugars because she has been showing some symptoms of CFRD.

We just stay on Courtneys case about taking her enzymes (since she has hit her teens she has become somewhat noncomplaint with her meds)and keep a close eye on her weight.

I do have one question for the CFers of this site dealing with this issue......

How do you keep the large calorie intake when you have CFRD? I would think this would be a very hard balance between keeping a high caloric intake, but watching sugar and carb intake?!

Seana
 
S

Seana30

New member
Courtney, 15 years old, has severe pancreatic insufficiency. She has had weight issues since birth although she was not diagnosed with CF till she was 10.

She is 5 feet 4 inches tall and weighs 94 pounds.

As we speak we are monitoring her blood sugars because she has been showing some symptoms of CFRD.

We just stay on Courtneys case about taking her enzymes (since she has hit her teens she has become somewhat noncomplaint with her meds)and keep a close eye on her weight.

I do have one question for the CFers of this site dealing with this issue......

How do you keep the large calorie intake when you have CFRD? I would think this would be a very hard balance between keeping a high caloric intake, but watching sugar and carb intake?!

Seana
 
S

Seana30

New member
Courtney, 15 years old, has severe pancreatic insufficiency. She has had weight issues since birth although she was not diagnosed with CF till she was 10.

She is 5 feet 4 inches tall and weighs 94 pounds.

As we speak we are monitoring her blood sugars because she has been showing some symptoms of CFRD.

We just stay on Courtneys case about taking her enzymes (since she has hit her teens she has become somewhat noncomplaint with her meds)and keep a close eye on her weight.

I do have one question for the CFers of this site dealing with this issue......

How do you keep the large calorie intake when you have CFRD? I would think this would be a very hard balance between keeping a high caloric intake, but watching sugar and carb intake?!

Seana
 
S

Seana30

New member
Courtney, 15 years old, has severe pancreatic insufficiency. She has had weight issues since birth although she was not diagnosed with CF till she was 10.
<br />
<br />She is 5 feet 4 inches tall and weighs 94 pounds.
<br />
<br />As we speak we are monitoring her blood sugars because she has been showing some symptoms of CFRD.
<br />
<br />We just stay on Courtneys case about taking her enzymes (since she has hit her teens she has become somewhat noncomplaint with her meds)and keep a close eye on her weight.
<br />
<br />I do have one question for the CFers of this site dealing with this issue......
<br />
<br />How do you keep the large calorie intake when you have CFRD? I would think this would be a very hard balance between keeping a high caloric intake, but watching sugar and carb intake?!
<br />
<br />Seana
<br />
<br />
 
J

JoshuasMom

New member
My son is 11 months old and was diagnosed with CF at birth. Subsequent testing shows that he had severe pancreatic insufficiency. He has been on ever increasing doses of Creon ever since.
 
J

JoshuasMom

New member
My son is 11 months old and was diagnosed with CF at birth. Subsequent testing shows that he had severe pancreatic insufficiency. He has been on ever increasing doses of Creon ever since.
 
J

JoshuasMom

New member
My son is 11 months old and was diagnosed with CF at birth. Subsequent testing shows that he had severe pancreatic insufficiency. He has been on ever increasing doses of Creon ever since.
 
J

JoshuasMom

New member
My son is 11 months old and was diagnosed with CF at birth. Subsequent testing shows that he had severe pancreatic insufficiency. He has been on ever increasing doses of Creon ever since.
 
J

JoshuasMom

New member
My son is 11 months old and was diagnosed with CF at birth. Subsequent testing shows that he had severe pancreatic insufficiency. He has been on ever increasing doses of Creon ever since.
 
D

dsrtsno

New member
i was dxd at birth w/ m.i. and have been p.i. since. was dxd with diabetes at 12, then they changed it to cfrd when i was 18.

this past year, while trying to figure out what is causing some severe pain i'm having in my abdomen i've found out that because of all the high doses of enzymes i've taken, i have thickened bowel walls, along with colitis (not related to the enzymes, just because jesus loves me)...

if you have sever p.i. or your child does, make sure you talk to your dr about the amount of lipase, etc, that is safe for your/their weight. my drs aren't sure if the thickening is what is causing my problems now, but if it is... you dont want to experience it. im living off vicodin and zofran.

also, i was JUST (i'm 26) told that i should be taking my enzymes a few bites into my meal to get the most benefit from them. for 26 years i was told to take them before i ate and that that could have been causing some problems i have....

(im in the hospital right now in some excruciating pain, so im sorry for my babbling and random writing)

i think the best thing you could do for your child is educate yourself as much as you can on the digestive system, what a normal pancrease for their size/weight would produce, what amount is needed for specific caloric/fat % foods... and talk to your nutritionist about working it out so its functional and not just depending on their "high cal - high protein" diet, because as educated as our health care officials are, we aren't just one disease and we haven't had the treatments they give long enough to realize the side effects they could produce... and if you can do it and implement when the kids young, when they get older and have to manage it on their own it will be a lot easier for them.

that was a book sorry... and sorry if it is very coherent... i'll probably come back and edit it in the am when i'm not so frustrated!!!

good luck!!
 
D

dsrtsno

New member
i was dxd at birth w/ m.i. and have been p.i. since. was dxd with diabetes at 12, then they changed it to cfrd when i was 18.

this past year, while trying to figure out what is causing some severe pain i'm having in my abdomen i've found out that because of all the high doses of enzymes i've taken, i have thickened bowel walls, along with colitis (not related to the enzymes, just because jesus loves me)...

if you have sever p.i. or your child does, make sure you talk to your dr about the amount of lipase, etc, that is safe for your/their weight. my drs aren't sure if the thickening is what is causing my problems now, but if it is... you dont want to experience it. im living off vicodin and zofran.

also, i was JUST (i'm 26) told that i should be taking my enzymes a few bites into my meal to get the most benefit from them. for 26 years i was told to take them before i ate and that that could have been causing some problems i have....

(im in the hospital right now in some excruciating pain, so im sorry for my babbling and random writing)

i think the best thing you could do for your child is educate yourself as much as you can on the digestive system, what a normal pancrease for their size/weight would produce, what amount is needed for specific caloric/fat % foods... and talk to your nutritionist about working it out so its functional and not just depending on their "high cal - high protein" diet, because as educated as our health care officials are, we aren't just one disease and we haven't had the treatments they give long enough to realize the side effects they could produce... and if you can do it and implement when the kids young, when they get older and have to manage it on their own it will be a lot easier for them.

that was a book sorry... and sorry if it is very coherent... i'll probably come back and edit it in the am when i'm not so frustrated!!!

good luck!!
 
D

dsrtsno

New member
i was dxd at birth w/ m.i. and have been p.i. since. was dxd with diabetes at 12, then they changed it to cfrd when i was 18.

this past year, while trying to figure out what is causing some severe pain i'm having in my abdomen i've found out that because of all the high doses of enzymes i've taken, i have thickened bowel walls, along with colitis (not related to the enzymes, just because jesus loves me)...

if you have sever p.i. or your child does, make sure you talk to your dr about the amount of lipase, etc, that is safe for your/their weight. my drs aren't sure if the thickening is what is causing my problems now, but if it is... you dont want to experience it. im living off vicodin and zofran.

also, i was JUST (i'm 26) told that i should be taking my enzymes a few bites into my meal to get the most benefit from them. for 26 years i was told to take them before i ate and that that could have been causing some problems i have....

(im in the hospital right now in some excruciating pain, so im sorry for my babbling and random writing)

i think the best thing you could do for your child is educate yourself as much as you can on the digestive system, what a normal pancrease for their size/weight would produce, what amount is needed for specific caloric/fat % foods... and talk to your nutritionist about working it out so its functional and not just depending on their "high cal - high protein" diet, because as educated as our health care officials are, we aren't just one disease and we haven't had the treatments they give long enough to realize the side effects they could produce... and if you can do it and implement when the kids young, when they get older and have to manage it on their own it will be a lot easier for them.

that was a book sorry... and sorry if it is very coherent... i'll probably come back and edit it in the am when i'm not so frustrated!!!

good luck!!
 
D

dsrtsno

New member
i was dxd at birth w/ m.i. and have been p.i. since. was dxd with diabetes at 12, then they changed it to cfrd when i was 18.

this past year, while trying to figure out what is causing some severe pain i'm having in my abdomen i've found out that because of all the high doses of enzymes i've taken, i have thickened bowel walls, along with colitis (not related to the enzymes, just because jesus loves me)...

if you have sever p.i. or your child does, make sure you talk to your dr about the amount of lipase, etc, that is safe for your/their weight. my drs aren't sure if the thickening is what is causing my problems now, but if it is... you dont want to experience it. im living off vicodin and zofran.

also, i was JUST (i'm 26) told that i should be taking my enzymes a few bites into my meal to get the most benefit from them. for 26 years i was told to take them before i ate and that that could have been causing some problems i have....

(im in the hospital right now in some excruciating pain, so im sorry for my babbling and random writing)

i think the best thing you could do for your child is educate yourself as much as you can on the digestive system, what a normal pancrease for their size/weight would produce, what amount is needed for specific caloric/fat % foods... and talk to your nutritionist about working it out so its functional and not just depending on their "high cal - high protein" diet, because as educated as our health care officials are, we aren't just one disease and we haven't had the treatments they give long enough to realize the side effects they could produce... and if you can do it and implement when the kids young, when they get older and have to manage it on their own it will be a lot easier for them.

that was a book sorry... and sorry if it is very coherent... i'll probably come back and edit it in the am when i'm not so frustrated!!!

good luck!!
 
D

dsrtsno

New member
i was dxd at birth w/ m.i. and have been p.i. since. was dxd with diabetes at 12, then they changed it to cfrd when i was 18.
<br />
<br />this past year, while trying to figure out what is causing some severe pain i'm having in my abdomen i've found out that because of all the high doses of enzymes i've taken, i have thickened bowel walls, along with colitis (not related to the enzymes, just because jesus loves me)...
<br />
<br />if you have sever p.i. or your child does, make sure you talk to your dr about the amount of lipase, etc, that is safe for your/their weight. my drs aren't sure if the thickening is what is causing my problems now, but if it is... you dont want to experience it. im living off vicodin and zofran.
<br />
<br />also, i was JUST (i'm 26) told that i should be taking my enzymes a few bites into my meal to get the most benefit from them. for 26 years i was told to take them before i ate and that that could have been causing some problems i have....
<br />
<br />(im in the hospital right now in some excruciating pain, so im sorry for my babbling and random writing)
<br />
<br />i think the best thing you could do for your child is educate yourself as much as you can on the digestive system, what a normal pancrease for their size/weight would produce, what amount is needed for specific caloric/fat % foods... and talk to your nutritionist about working it out so its functional and not just depending on their "high cal - high protein" diet, because as educated as our health care officials are, we aren't just one disease and we haven't had the treatments they give long enough to realize the side effects they could produce... and if you can do it and implement when the kids young, when they get older and have to manage it on their own it will be a lot easier for them.
<br />
<br />that was a book sorry... and sorry if it is very coherent... i'll probably come back and edit it in the am when i'm not so frustrated!!!
<br />
<br />good luck!!
 
B

bagged2drag

Active member
A doctor can merely speculate if a child will get cfrd, and at what age. As you can see, many of us here have completely different outcomes. I myself have severe pancreatic deficiency, have since I was a child. Even with 10 MT 20's, I hit the bathroom 5+ times a day on normal food, even more with anything greasy, or watery (like soup). For a long time though, I would get obstructions if I took any pancrease. Needless to say, I was around the 15-25 percentile my whole life. It is probably a good idea to just find out what works best for your child, as there is no definite rules for the outcome. Hopefully, with early intervention and a well controlled diet, your child will do very well. Also, I see dsrtsno takes pancrease right after starting a meal, but used to beforehand. This seams to be an issue that many of us face, when IS the right time? Many doctors will give a different answer to that question, unfortunately I don't know exactly what is the best choice. I was told to take my meds at the time of eating, I have been told 15-20 mins before, and I have been told to stagger throughout my meal.. Honestly, for me though, I don't experience a difference any way I do it.
 
B

bagged2drag

Active member
A doctor can merely speculate if a child will get cfrd, and at what age. As you can see, many of us here have completely different outcomes. I myself have severe pancreatic deficiency, have since I was a child. Even with 10 MT 20's, I hit the bathroom 5+ times a day on normal food, even more with anything greasy, or watery (like soup). For a long time though, I would get obstructions if I took any pancrease. Needless to say, I was around the 15-25 percentile my whole life. It is probably a good idea to just find out what works best for your child, as there is no definite rules for the outcome. Hopefully, with early intervention and a well controlled diet, your child will do very well. Also, I see dsrtsno takes pancrease right after starting a meal, but used to beforehand. This seams to be an issue that many of us face, when IS the right time? Many doctors will give a different answer to that question, unfortunately I don't know exactly what is the best choice. I was told to take my meds at the time of eating, I have been told 15-20 mins before, and I have been told to stagger throughout my meal.. Honestly, for me though, I don't experience a difference any way I do it.
 
B

bagged2drag

Active member
A doctor can merely speculate if a child will get cfrd, and at what age. As you can see, many of us here have completely different outcomes. I myself have severe pancreatic deficiency, have since I was a child. Even with 10 MT 20's, I hit the bathroom 5+ times a day on normal food, even more with anything greasy, or watery (like soup). For a long time though, I would get obstructions if I took any pancrease. Needless to say, I was around the 15-25 percentile my whole life. It is probably a good idea to just find out what works best for your child, as there is no definite rules for the outcome. Hopefully, with early intervention and a well controlled diet, your child will do very well. Also, I see dsrtsno takes pancrease right after starting a meal, but used to beforehand. This seams to be an issue that many of us face, when IS the right time? Many doctors will give a different answer to that question, unfortunately I don't know exactly what is the best choice. I was told to take my meds at the time of eating, I have been told 15-20 mins before, and I have been told to stagger throughout my meal.. Honestly, for me though, I don't experience a difference any way I do it.
 
B

bagged2drag

Active member
A doctor can merely speculate if a child will get cfrd, and at what age. As you can see, many of us here have completely different outcomes. I myself have severe pancreatic deficiency, have since I was a child. Even with 10 MT 20's, I hit the bathroom 5+ times a day on normal food, even more with anything greasy, or watery (like soup). For a long time though, I would get obstructions if I took any pancrease. Needless to say, I was around the 15-25 percentile my whole life. It is probably a good idea to just find out what works best for your child, as there is no definite rules for the outcome. Hopefully, with early intervention and a well controlled diet, your child will do very well. Also, I see dsrtsno takes pancrease right after starting a meal, but used to beforehand. This seams to be an issue that many of us face, when IS the right time? Many doctors will give a different answer to that question, unfortunately I don't know exactly what is the best choice. I was told to take my meds at the time of eating, I have been told 15-20 mins before, and I have been told to stagger throughout my meal.. Honestly, for me though, I don't experience a difference any way I do it.
 
B

bagged2drag

Active member
A doctor can merely speculate if a child will get cfrd, and at what age. As you can see, many of us here have completely different outcomes. I myself have severe pancreatic deficiency, have since I was a child. Even with 10 MT 20's, I hit the bathroom 5+ times a day on normal food, even more with anything greasy, or watery (like soup). For a long time though, I would get obstructions if I took any pancrease. Needless to say, I was around the 15-25 percentile my whole life. It is probably a good idea to just find out what works best for your child, as there is no definite rules for the outcome. Hopefully, with early intervention and a well controlled diet, your child will do very well. Also, I see dsrtsno takes pancrease right after starting a meal, but used to beforehand. This seams to be an issue that many of us face, when IS the right time? Many doctors will give a different answer to that question, unfortunately I don't know exactly what is the best choice. I was told to take my meds at the time of eating, I have been told 15-20 mins before, and I have been told to stagger throughout my meal.. Honestly, for me though, I don't experience a difference any way I do it.
 
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