How manageable is CFRD?

[kitomd21]

We found out today that our 1 month old is severely pancreatic insufficient and will most likely develop diabetes during her teen years. Is management of this form the same as "regular" diabetes? Would appreciate hearing about your personal stories...

 

[kitomd21]

We found out today that our 1 month old is severely pancreatic insufficient and will most likely develop diabetes during her teen years. Is management of this form the same as "regular" diabetes? Would appreciate hearing about your personal stories...

 

[kitomd21]

We found out today that our 1 month old is severely pancreatic insufficient and will most likely develop diabetes during her teen years. Is management of this form the same as "regular" diabetes? Would appreciate hearing about your personal stories...

 

[kitomd21]

We found out today that our 1 month old is severely pancreatic insufficient and will most likely develop diabetes during her teen years. Is management of this form the same as "regular" diabetes? Would appreciate hearing about your personal stories...

 

[kitomd21]

We found out today that our 1 month old is severely pancreatic insufficient and will most likely develop diabetes during her teen years. Is management of this form the same as "regular" diabetes? Would appreciate hearing about your personal stories...

 

[LeneSouthAfrica]

Congrats on your baby! CF diabetes develops due to gradual pancreas damage, and often the pancreas can still make some insulin, just not enough...There are loads of posts on CF diabetes on this site, and I am sure you will find it informative doing a search...but in short, the treatment of Cf diabetes varies acc to severity, but the idea is the same; to try and achieve stable blood sugars for better overall health. This can be done using insulin or other meds, in a variety of methods (pills, injections, pumps). I use a short acting insulin injection to manage my sugars after meals and a finger-prick thingy to test if the sugars are in the right range. The injection doesn't hurt, the needle is tiny. Some Cfers have to use both long-acting and short-acting insulin. There are sometimes differences in Cf diabetes, e.g. it is usually not recommended to cut out sugar and carbs as normal diabetic would, because many CFers have too hard a time gaining weight. So instead we use the insulin to manage the sugar and carbs so we still get the calories but without unstable blood sugars. Also, lung infections and certain medications can make your sugars 'play up' so it is important to see drs who know Cf and not a regular diabetes dr. Personally my life and diet has not changed much, but I do try and eat a healthy diet and not junk food or sugar binges. Another thing which seems common in CF diabetes is that we can also get spells of low bloods sugar, even when not using insulin. It seems like a contradiction, but the reason this happens is that if blood sugars go abnormally high after eating your body overcompensates, leading to a rebound effect of low sugar (this is why a feeling of low blood sugar are often a tell-tale sign of the onset of CF diabetes). Hope this info makes sense, and is not too overwhelming at a time when everything must still seem very overwhelming to you...

 

[LeneSouthAfrica]

Congrats on your baby! CF diabetes develops due to gradual pancreas damage, and often the pancreas can still make some insulin, just not enough...There are loads of posts on CF diabetes on this site, and I am sure you will find it informative doing a search...but in short, the treatment of Cf diabetes varies acc to severity, but the idea is the same; to try and achieve stable blood sugars for better overall health. This can be done using insulin or other meds, in a variety of methods (pills, injections, pumps). I use a short acting insulin injection to manage my sugars after meals and a finger-prick thingy to test if the sugars are in the right range. The injection doesn't hurt, the needle is tiny. Some Cfers have to use both long-acting and short-acting insulin. There are sometimes differences in Cf diabetes, e.g. it is usually not recommended to cut out sugar and carbs as normal diabetic would, because many CFers have too hard a time gaining weight. So instead we use the insulin to manage the sugar and carbs so we still get the calories but without unstable blood sugars. Also, lung infections and certain medications can make your sugars 'play up' so it is important to see drs who know Cf and not a regular diabetes dr. Personally my life and diet has not changed much, but I do try and eat a healthy diet and not junk food or sugar binges. Another thing which seems common in CF diabetes is that we can also get spells of low bloods sugar, even when not using insulin. It seems like a contradiction, but the reason this happens is that if blood sugars go abnormally high after eating your body overcompensates, leading to a rebound effect of low sugar (this is why a feeling of low blood sugar are often a tell-tale sign of the onset of CF diabetes). Hope this info makes sense, and is not too overwhelming at a time when everything must still seem very overwhelming to you...

 

[LeneSouthAfrica]

Congrats on your baby! CF diabetes develops due to gradual pancreas damage, and often the pancreas can still make some insulin, just not enough...There are loads of posts on CF diabetes on this site, and I am sure you will find it informative doing a search...but in short, the treatment of Cf diabetes varies acc to severity, but the idea is the same; to try and achieve stable blood sugars for better overall health. This can be done using insulin or other meds, in a variety of methods (pills, injections, pumps). I use a short acting insulin injection to manage my sugars after meals and a finger-prick thingy to test if the sugars are in the right range. The injection doesn't hurt, the needle is tiny. Some Cfers have to use both long-acting and short-acting insulin. There are sometimes differences in Cf diabetes, e.g. it is usually not recommended to cut out sugar and carbs as normal diabetic would, because many CFers have too hard a time gaining weight. So instead we use the insulin to manage the sugar and carbs so we still get the calories but without unstable blood sugars. Also, lung infections and certain medications can make your sugars 'play up' so it is important to see drs who know Cf and not a regular diabetes dr. Personally my life and diet has not changed much, but I do try and eat a healthy diet and not junk food or sugar binges. Another thing which seems common in CF diabetes is that we can also get spells of low bloods sugar, even when not using insulin. It seems like a contradiction, but the reason this happens is that if blood sugars go abnormally high after eating your body overcompensates, leading to a rebound effect of low sugar (this is why a feeling of low blood sugar are often a tell-tale sign of the onset of CF diabetes). Hope this info makes sense, and is not too overwhelming at a time when everything must still seem very overwhelming to you...

 

[LeneSouthAfrica]

Congrats on your baby! CF diabetes develops due to gradual pancreas damage, and often the pancreas can still make some insulin, just not enough...There are loads of posts on CF diabetes on this site, and I am sure you will find it informative doing a search...but in short, the treatment of Cf diabetes varies acc to severity, but the idea is the same; to try and achieve stable blood sugars for better overall health. This can be done using insulin or other meds, in a variety of methods (pills, injections, pumps). I use a short acting insulin injection to manage my sugars after meals and a finger-prick thingy to test if the sugars are in the right range. The injection doesn't hurt, the needle is tiny. Some Cfers have to use both long-acting and short-acting insulin. There are sometimes differences in Cf diabetes, e.g. it is usually not recommended to cut out sugar and carbs as normal diabetic would, because many CFers have too hard a time gaining weight. So instead we use the insulin to manage the sugar and carbs so we still get the calories but without unstable blood sugars. Also, lung infections and certain medications can make your sugars 'play up' so it is important to see drs who know Cf and not a regular diabetes dr. Personally my life and diet has not changed much, but I do try and eat a healthy diet and not junk food or sugar binges. Another thing which seems common in CF diabetes is that we can also get spells of low bloods sugar, even when not using insulin. It seems like a contradiction, but the reason this happens is that if blood sugars go abnormally high after eating your body overcompensates, leading to a rebound effect of low sugar (this is why a feeling of low blood sugar are often a tell-tale sign of the onset of CF diabetes). Hope this info makes sense, and is not too overwhelming at a time when everything must still seem very overwhelming to you...

 

[LeneSouthAfrica]

Congrats on your baby! CF diabetes develops due to gradual pancreas damage, and often the pancreas can still make some insulin, just not enough...There are loads of posts on CF diabetes on this site, and I am sure you will find it informative doing a search...but in short, the treatment of Cf diabetes varies acc to severity, but the idea is the same; to try and achieve stable blood sugars for better overall health. This can be done using insulin or other meds, in a variety of methods (pills, injections, pumps). I use a short acting insulin injection to manage my sugars after meals and a finger-prick thingy to test if the sugars are in the right range. The injection doesn't hurt, the needle is tiny. Some Cfers have to use both long-acting and short-acting insulin. There are sometimes differences in Cf diabetes, e.g. it is usually not recommended to cut out sugar and carbs as normal diabetic would, because many CFers have too hard a time gaining weight. So instead we use the insulin to manage the sugar and carbs so we still get the calories but without unstable blood sugars. Also, lung infections and certain medications can make your sugars 'play up' so it is important to see drs who know Cf and not a regular diabetes dr. Personally my life and diet has not changed much, but I do try and eat a healthy diet and not junk food or sugar binges. Another thing which seems common in CF diabetes is that we can also get spells of low bloods sugar, even when not using insulin. It seems like a contradiction, but the reason this happens is that if blood sugars go abnormally high after eating your body overcompensates, leading to a rebound effect of low sugar (this is why a feeling of low blood sugar are often a tell-tale sign of the onset of CF diabetes). Hope this info makes sense, and is not too overwhelming at a time when everything must still seem very overwhelming to you...

 

[robert321]

as far as the management of cfrd, its fairly simple, a lot cf patients develop it, i am developing it. all i have to do is give myself a little bit of insulin in the mornings that lasts all day, levemir, and i have a fast, short acting insulin that i use with a sliding scale to bring my blood sugar down when it gets high, that novolog, and i test 3 times a day every other day and when i feel it messed up, its progressive and you need more insulin and more checking as it gets more advanced and you can start to use an insulin pump to make things easier then, oh and the needles are really small and half the time i can barely feel it when i stick myself, you'll probably have to carry some fastacting isulin and a meter with you but thats not a big deal, as far as cf treatment goes, cfrd is an afterthought, the biggest problem i have with it is the occasional low but thats easy to deal with, just eat something, i don't have to modify my diet or anything, but even still i wouldn't recommend eating a rediculous amount of sugar, very much cotton candy is a bad idea even still, it'll set you up for a crash

 

[robert321]

as far as the management of cfrd, its fairly simple, a lot cf patients develop it, i am developing it. all i have to do is give myself a little bit of insulin in the mornings that lasts all day, levemir, and i have a fast, short acting insulin that i use with a sliding scale to bring my blood sugar down when it gets high, that novolog, and i test 3 times a day every other day and when i feel it messed up, its progressive and you need more insulin and more checking as it gets more advanced and you can start to use an insulin pump to make things easier then, oh and the needles are really small and half the time i can barely feel it when i stick myself, you'll probably have to carry some fastacting isulin and a meter with you but thats not a big deal, as far as cf treatment goes, cfrd is an afterthought, the biggest problem i have with it is the occasional low but thats easy to deal with, just eat something, i don't have to modify my diet or anything, but even still i wouldn't recommend eating a rediculous amount of sugar, very much cotton candy is a bad idea even still, it'll set you up for a crash

 

[robert321]

as far as the management of cfrd, its fairly simple, a lot cf patients develop it, i am developing it. all i have to do is give myself a little bit of insulin in the mornings that lasts all day, levemir, and i have a fast, short acting insulin that i use with a sliding scale to bring my blood sugar down when it gets high, that novolog, and i test 3 times a day every other day and when i feel it messed up, its progressive and you need more insulin and more checking as it gets more advanced and you can start to use an insulin pump to make things easier then, oh and the needles are really small and half the time i can barely feel it when i stick myself, you'll probably have to carry some fastacting isulin and a meter with you but thats not a big deal, as far as cf treatment goes, cfrd is an afterthought, the biggest problem i have with it is the occasional low but thats easy to deal with, just eat something, i don't have to modify my diet or anything, but even still i wouldn't recommend eating a rediculous amount of sugar, very much cotton candy is a bad idea even still, it'll set you up for a crash

 

[robert321]

as far as the management of cfrd, its fairly simple, a lot cf patients develop it, i am developing it. all i have to do is give myself a little bit of insulin in the mornings that lasts all day, levemir, and i have a fast, short acting insulin that i use with a sliding scale to bring my blood sugar down when it gets high, that novolog, and i test 3 times a day every other day and when i feel it messed up, its progressive and you need more insulin and more checking as it gets more advanced and you can start to use an insulin pump to make things easier then, oh and the needles are really small and half the time i can barely feel it when i stick myself, you'll probably have to carry some fastacting isulin and a meter with you but thats not a big deal, as far as cf treatment goes, cfrd is an afterthought, the biggest problem i have with it is the occasional low but thats easy to deal with, just eat something, i don't have to modify my diet or anything, but even still i wouldn't recommend eating a rediculous amount of sugar, very much cotton candy is a bad idea even still, it'll set you up for a crash

 

[robert321]

as far as the management of cfrd, its fairly simple, a lot cf patients develop it, i am developing it. all i have to do is give myself a little bit of insulin in the mornings that lasts all day, levemir, and i have a fast, short acting insulin that i use with a sliding scale to bring my blood sugar down when it gets high, that novolog, and i test 3 times a day every other day and when i feel it messed up, its progressive and you need more insulin and more checking as it gets more advanced and you can start to use an insulin pump to make things easier then, oh and the needles are really small and half the time i can barely feel it when i stick myself, you'll probably have to carry some fastacting isulin and a meter with you but thats not a big deal, as far as cf treatment goes, cfrd is an afterthought, the biggest problem i have with it is the occasional low but thats easy to deal with, just eat something, i don't have to modify my diet or anything, but even still i wouldn't recommend eating a rediculous amount of sugar, very much cotton candy is a bad idea even still, it'll set you up for a crash