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Pancreas issues ..sigh
- Thread starter martysmom
- Start date
Kelly, there are no words to properly express how concerned you are. My daughter is due to have her A1C rechecked this month due to a possible elevation a couple of months ago. Her CF doctor didn't make anything of her value but her nutritionist looked at the value incredulously! Nice that the nutritionist was concerned but her doctor wasn't! At any rate, her doctor said that the CFF is likely going to drop the A1C value as a diagnostic tool for CFRD. It can be elevated in times of illness (a chronic state for CFers it would seem as they fight bacteria in their lungs!) and the pre and post prandial values may be more telling.
My daughter's nutritionist was convinced she had Celiac disease due to proper enzyme dosing/administration and poor weight gain. We ruled that out over time and changes in her stool that weren't related to anything Celiac. She also thought her poor weight gain was due to CFRD due to her possible elevation in A1C. Our dietician has the habit of focusing on the "rare" occurrences (e.g., CFRD in a 2.5 yr old like my daughter) and forgetting to pursue other avenues for weight gain. In my opinion, her dietician hasn't been the most helpful - rather, she's had us freaked out about various concurrent illnesses unnecessarily it seems. However, weight gain is important (obviously!) and does relate to lung function...any possible cause for poor weight gain should be pursued. <img src="i/expressions/face-icon-small-sad.gif" border="0">
At any rate...I feel your pain. What we're finding more success with is giving our daughter her enzymes during her meal (i.e., beginning, middle, end). She isn't on a PPI at this point, but I do know how common it is for CFers to take a PPI to improve enzyme efficiency. She's been on Pancrease MT4s, Creon, and Zenpep. Creon was AWFUL. Also odd how some individuals do well with one enzyme and another does quite poorly. Zenpep has been comparable to Pancrease, but I do believe her weight gain has improved since moving from the Zenpep5's to Zenpep10's (perhaps the "time-release" component is better with the larger beads?).
Lastly, CFRD is not the same as Type 1 or 2 diabetes. It's easier to manage and these individuals aren't prone to the many other issues that often accompany diabetes (e.g., circulatory problems, etc.). Having no CFRD is ideal...but, know that if this is the answer to Marty's poor weight gain, he'll quickly get on track with weight gain.
There are just no simple answers. I'll be praying for your little guy!!
My daughter's nutritionist was convinced she had Celiac disease due to proper enzyme dosing/administration and poor weight gain. We ruled that out over time and changes in her stool that weren't related to anything Celiac. She also thought her poor weight gain was due to CFRD due to her possible elevation in A1C. Our dietician has the habit of focusing on the "rare" occurrences (e.g., CFRD in a 2.5 yr old like my daughter) and forgetting to pursue other avenues for weight gain. In my opinion, her dietician hasn't been the most helpful - rather, she's had us freaked out about various concurrent illnesses unnecessarily it seems. However, weight gain is important (obviously!) and does relate to lung function...any possible cause for poor weight gain should be pursued. <img src="i/expressions/face-icon-small-sad.gif" border="0">
At any rate...I feel your pain. What we're finding more success with is giving our daughter her enzymes during her meal (i.e., beginning, middle, end). She isn't on a PPI at this point, but I do know how common it is for CFers to take a PPI to improve enzyme efficiency. She's been on Pancrease MT4s, Creon, and Zenpep. Creon was AWFUL. Also odd how some individuals do well with one enzyme and another does quite poorly. Zenpep has been comparable to Pancrease, but I do believe her weight gain has improved since moving from the Zenpep5's to Zenpep10's (perhaps the "time-release" component is better with the larger beads?).
Lastly, CFRD is not the same as Type 1 or 2 diabetes. It's easier to manage and these individuals aren't prone to the many other issues that often accompany diabetes (e.g., circulatory problems, etc.). Having no CFRD is ideal...but, know that if this is the answer to Marty's poor weight gain, he'll quickly get on track with weight gain.
There are just no simple answers. I'll be praying for your little guy!!
Kelly, there are no words to properly express how concerned you are. My daughter is due to have her A1C rechecked this month due to a possible elevation a couple of months ago. Her CF doctor didn't make anything of her value but her nutritionist looked at the value incredulously! Nice that the nutritionist was concerned but her doctor wasn't! At any rate, her doctor said that the CFF is likely going to drop the A1C value as a diagnostic tool for CFRD. It can be elevated in times of illness (a chronic state for CFers it would seem as they fight bacteria in their lungs!) and the pre and post prandial values may be more telling.
My daughter's nutritionist was convinced she had Celiac disease due to proper enzyme dosing/administration and poor weight gain. We ruled that out over time and changes in her stool that weren't related to anything Celiac. She also thought her poor weight gain was due to CFRD due to her possible elevation in A1C. Our dietician has the habit of focusing on the "rare" occurrences (e.g., CFRD in a 2.5 yr old like my daughter) and forgetting to pursue other avenues for weight gain. In my opinion, her dietician hasn't been the most helpful - rather, she's had us freaked out about various concurrent illnesses unnecessarily it seems. However, weight gain is important (obviously!) and does relate to lung function...any possible cause for poor weight gain should be pursued. <img src="i/expressions/face-icon-small-sad.gif" border="0">
At any rate...I feel your pain. What we're finding more success with is giving our daughter her enzymes during her meal (i.e., beginning, middle, end). She isn't on a PPI at this point, but I do know how common it is for CFers to take a PPI to improve enzyme efficiency. She's been on Pancrease MT4s, Creon, and Zenpep. Creon was AWFUL. Also odd how some individuals do well with one enzyme and another does quite poorly. Zenpep has been comparable to Pancrease, but I do believe her weight gain has improved since moving from the Zenpep5's to Zenpep10's (perhaps the "time-release" component is better with the larger beads?).
Lastly, CFRD is not the same as Type 1 or 2 diabetes. It's easier to manage and these individuals aren't prone to the many other issues that often accompany diabetes (e.g., circulatory problems, etc.). Having no CFRD is ideal...but, know that if this is the answer to Marty's poor weight gain, he'll quickly get on track with weight gain.
There are just no simple answers. I'll be praying for your little guy!!
My daughter's nutritionist was convinced she had Celiac disease due to proper enzyme dosing/administration and poor weight gain. We ruled that out over time and changes in her stool that weren't related to anything Celiac. She also thought her poor weight gain was due to CFRD due to her possible elevation in A1C. Our dietician has the habit of focusing on the "rare" occurrences (e.g., CFRD in a 2.5 yr old like my daughter) and forgetting to pursue other avenues for weight gain. In my opinion, her dietician hasn't been the most helpful - rather, she's had us freaked out about various concurrent illnesses unnecessarily it seems. However, weight gain is important (obviously!) and does relate to lung function...any possible cause for poor weight gain should be pursued. <img src="i/expressions/face-icon-small-sad.gif" border="0">
At any rate...I feel your pain. What we're finding more success with is giving our daughter her enzymes during her meal (i.e., beginning, middle, end). She isn't on a PPI at this point, but I do know how common it is for CFers to take a PPI to improve enzyme efficiency. She's been on Pancrease MT4s, Creon, and Zenpep. Creon was AWFUL. Also odd how some individuals do well with one enzyme and another does quite poorly. Zenpep has been comparable to Pancrease, but I do believe her weight gain has improved since moving from the Zenpep5's to Zenpep10's (perhaps the "time-release" component is better with the larger beads?).
Lastly, CFRD is not the same as Type 1 or 2 diabetes. It's easier to manage and these individuals aren't prone to the many other issues that often accompany diabetes (e.g., circulatory problems, etc.). Having no CFRD is ideal...but, know that if this is the answer to Marty's poor weight gain, he'll quickly get on track with weight gain.
There are just no simple answers. I'll be praying for your little guy!!
Kelly, there are no words to properly express how concerned you are. My daughter is due to have her A1C rechecked this month due to a possible elevation a couple of months ago. Her CF doctor didn't make anything of her value but her nutritionist looked at the value incredulously! Nice that the nutritionist was concerned but her doctor wasn't! At any rate, her doctor said that the CFF is likely going to drop the A1C value as a diagnostic tool for CFRD. It can be elevated in times of illness (a chronic state for CFers it would seem as they fight bacteria in their lungs!) and the pre and post prandial values may be more telling.
<br />
<br />My daughter's nutritionist was convinced she had Celiac disease due to proper enzyme dosing/administration and poor weight gain. We ruled that out over time and changes in her stool that weren't related to anything Celiac. She also thought her poor weight gain was due to CFRD due to her possible elevation in A1C. Our dietician has the habit of focusing on the "rare" occurrences (e.g., CFRD in a 2.5 yr old like my daughter) and forgetting to pursue other avenues for weight gain. In my opinion, her dietician hasn't been the most helpful - rather, she's had us freaked out about various concurrent illnesses unnecessarily it seems. However, weight gain is important (obviously!) and does relate to lung function...any possible cause for poor weight gain should be pursued. <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />At any rate...I feel your pain. What we're finding more success with is giving our daughter her enzymes during her meal (i.e., beginning, middle, end). She isn't on a PPI at this point, but I do know how common it is for CFers to take a PPI to improve enzyme efficiency. She's been on Pancrease MT4s, Creon, and Zenpep. Creon was AWFUL. Also odd how some individuals do well with one enzyme and another does quite poorly. Zenpep has been comparable to Pancrease, but I do believe her weight gain has improved since moving from the Zenpep5's to Zenpep10's (perhaps the "time-release" component is better with the larger beads?).
<br />
<br />Lastly, CFRD is not the same as Type 1 or 2 diabetes. It's easier to manage and these individuals aren't prone to the many other issues that often accompany diabetes (e.g., circulatory problems, etc.). Having no CFRD is ideal...but, know that if this is the answer to Marty's poor weight gain, he'll quickly get on track with weight gain.
<br />
<br />There are just no simple answers. I'll be praying for your little guy!!
<br />
<br />
<br />
<br />My daughter's nutritionist was convinced she had Celiac disease due to proper enzyme dosing/administration and poor weight gain. We ruled that out over time and changes in her stool that weren't related to anything Celiac. She also thought her poor weight gain was due to CFRD due to her possible elevation in A1C. Our dietician has the habit of focusing on the "rare" occurrences (e.g., CFRD in a 2.5 yr old like my daughter) and forgetting to pursue other avenues for weight gain. In my opinion, her dietician hasn't been the most helpful - rather, she's had us freaked out about various concurrent illnesses unnecessarily it seems. However, weight gain is important (obviously!) and does relate to lung function...any possible cause for poor weight gain should be pursued. <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />At any rate...I feel your pain. What we're finding more success with is giving our daughter her enzymes during her meal (i.e., beginning, middle, end). She isn't on a PPI at this point, but I do know how common it is for CFers to take a PPI to improve enzyme efficiency. She's been on Pancrease MT4s, Creon, and Zenpep. Creon was AWFUL. Also odd how some individuals do well with one enzyme and another does quite poorly. Zenpep has been comparable to Pancrease, but I do believe her weight gain has improved since moving from the Zenpep5's to Zenpep10's (perhaps the "time-release" component is better with the larger beads?).
<br />
<br />Lastly, CFRD is not the same as Type 1 or 2 diabetes. It's easier to manage and these individuals aren't prone to the many other issues that often accompany diabetes (e.g., circulatory problems, etc.). Having no CFRD is ideal...but, know that if this is the answer to Marty's poor weight gain, he'll quickly get on track with weight gain.
<br />
<br />There are just no simple answers. I'll be praying for your little guy!!
<br />
<br />
C
Cherylwithone
Guest
Kelly, We all have those days. My daughter is 17 now and every time we get news that is not good I cry at times. Right now I get more upset because she is making plans for college. I don't want CF to get in her way.
Keep doing what your doing. See if you can change out the enzymes to another brand. My daughter had a allergic reaction to one brand. Sometims we just need to play around with the meds until we find something that works.
Big hug for you.
Keep doing what your doing. See if you can change out the enzymes to another brand. My daughter had a allergic reaction to one brand. Sometims we just need to play around with the meds until we find something that works.
Big hug for you.
C
Cherylwithone
Guest
Kelly, We all have those days. My daughter is 17 now and every time we get news that is not good I cry at times. Right now I get more upset because she is making plans for college. I don't want CF to get in her way.
Keep doing what your doing. See if you can change out the enzymes to another brand. My daughter had a allergic reaction to one brand. Sometims we just need to play around with the meds until we find something that works.
Big hug for you.
Keep doing what your doing. See if you can change out the enzymes to another brand. My daughter had a allergic reaction to one brand. Sometims we just need to play around with the meds until we find something that works.
Big hug for you.
C
Cherylwithone
Guest
Kelly, We all have those days. My daughter is 17 now and every time we get news that is not good I cry at times. Right now I get more upset because she is making plans for college. I don't want CF to get in her way.
<br />
<br />Keep doing what your doing. See if you can change out the enzymes to another brand. My daughter had a allergic reaction to one brand. Sometims we just need to play around with the meds until we find something that works.
<br />
<br />Big hug for you.
<br />
<br />Keep doing what your doing. See if you can change out the enzymes to another brand. My daughter had a allergic reaction to one brand. Sometims we just need to play around with the meds until we find something that works.
<br />
<br />Big hug for you.
M
mneville
Guest
Liza...That is so interesting you say that. Aidan is Double Delta and severely PI since birth. But he is HUGE. He is 6 years old and 71 pounds. People are totally shocked when they hear CF and his mutations. I can't explain why he gains and maintains so well. He is maxed out on enzymes and always has been. We've had to switch brands a few times and now he is doing well with ZenPep. BUT we have been using Mucomyst for the past 4 years after a trip to Minnesota. I wonder if that has something to do with it? We mix the Mucomyst with 2 other meds and use it as a neb but maybe it still helps with GI issues.
Megan
Megan
M
mneville
Guest
Liza...That is so interesting you say that. Aidan is Double Delta and severely PI since birth. But he is HUGE. He is 6 years old and 71 pounds. People are totally shocked when they hear CF and his mutations. I can't explain why he gains and maintains so well. He is maxed out on enzymes and always has been. We've had to switch brands a few times and now he is doing well with ZenPep. BUT we have been using Mucomyst for the past 4 years after a trip to Minnesota. I wonder if that has something to do with it? We mix the Mucomyst with 2 other meds and use it as a neb but maybe it still helps with GI issues.
Megan
Megan
M
mneville
Guest
Liza...That is so interesting you say that. Aidan is Double Delta and severely PI since birth. But he is HUGE. He is 6 years old and 71 pounds. People are totally shocked when they hear CF and his mutations. I can't explain why he gains and maintains so well. He is maxed out on enzymes and always has been. We've had to switch brands a few times and now he is doing well with ZenPep. BUT we have been using Mucomyst for the past 4 years after a trip to Minnesota. I wonder if that has something to do with it? We mix the Mucomyst with 2 other meds and use it as a neb but maybe it still helps with GI issues.
<br />Megan
<br />Megan
M
mneville
Guest
Kelly---So sorry for the bad news, it has to be so frustrating and I think we all know how you feel in some respects. There are days when I just feel so defeated by this illness despite doing everything right! Sometimes I feel like the doctors fed us a line of crap at diagnosis when they said it would be okay. Yea, it's gotten tons better and we are thrilled about that but it is still 'not okay'. Hang in there and hoping for good results!
Megan
Megan
M
mneville
Guest
Kelly---So sorry for the bad news, it has to be so frustrating and I think we all know how you feel in some respects. There are days when I just feel so defeated by this illness despite doing everything right! Sometimes I feel like the doctors fed us a line of crap at diagnosis when they said it would be okay. Yea, it's gotten tons better and we are thrilled about that but it is still 'not okay'. Hang in there and hoping for good results!
Megan
Megan
M
mneville
Guest
Kelly---So sorry for the bad news, it has to be so frustrating and I think we all know how you feel in some respects. There are days when I just feel so defeated by this illness despite doing everything right! Sometimes I feel like the doctors fed us a line of crap at diagnosis when they said it would be okay. Yea, it's gotten tons better and we are thrilled about that but it is still 'not okay'. Hang in there and hoping for good results!
<br />Megan
<br />Megan
Our pediatrician and the Diabetes expert at the local hospital were convinced our dd had Type 1 diabetes just after she turned 3 because of her very high blood-sugar levels. The Diabetes doctor said she was way too young to have CFRD so he thought it must be Type 1. She spent a night in the hospital with many finger pricks before they decided she didn't have Type 1 diabetes after all.
Her CF doctor later told us it is common for a CFer to have elevated blood-sugar when they have an infection. Your body uses extra insulin to fight off infections so there is less available for normal maintenance. It may mean your son will have CFRD later when he gets bigger, but right now it may just mean he is fighting off an infection.
Her CF doctor later told us it is common for a CFer to have elevated blood-sugar when they have an infection. Your body uses extra insulin to fight off infections so there is less available for normal maintenance. It may mean your son will have CFRD later when he gets bigger, but right now it may just mean he is fighting off an infection.
Our pediatrician and the Diabetes expert at the local hospital were convinced our dd had Type 1 diabetes just after she turned 3 because of her very high blood-sugar levels. The Diabetes doctor said she was way too young to have CFRD so he thought it must be Type 1. She spent a night in the hospital with many finger pricks before they decided she didn't have Type 1 diabetes after all.
Her CF doctor later told us it is common for a CFer to have elevated blood-sugar when they have an infection. Your body uses extra insulin to fight off infections so there is less available for normal maintenance. It may mean your son will have CFRD later when he gets bigger, but right now it may just mean he is fighting off an infection.
Her CF doctor later told us it is common for a CFer to have elevated blood-sugar when they have an infection. Your body uses extra insulin to fight off infections so there is less available for normal maintenance. It may mean your son will have CFRD later when he gets bigger, but right now it may just mean he is fighting off an infection.
Our pediatrician and the Diabetes expert at the local hospital were convinced our dd had Type 1 diabetes just after she turned 3 because of her very high blood-sugar levels. The Diabetes doctor said she was way too young to have CFRD so he thought it must be Type 1. She spent a night in the hospital with many finger pricks before they decided she didn't have Type 1 diabetes after all.
<br />
<br />Her CF doctor later told us it is common for a CFer to have elevated blood-sugar when they have an infection. Your body uses extra insulin to fight off infections so there is less available for normal maintenance. It may mean your son will have CFRD later when he gets bigger, but right now it may just mean he is fighting off an infection.
<br />
<br />Her CF doctor later told us it is common for a CFer to have elevated blood-sugar when they have an infection. Your body uses extra insulin to fight off infections so there is less available for normal maintenance. It may mean your son will have CFRD later when he gets bigger, but right now it may just mean he is fighting off an infection.