high blood sugar in the little man

M

martysmom

New member
Hi everyone!
How are you all doing? You guys are always so helpful. My son was recently diagnosed with CF and he seems to be having one problem after the other. He is severly panceatic insufficient and at the last clinic appointment the nutritionist sent us home with a meter to test his blood sugar. For the first few days it was high(reaching 270) and then it has been okay. The CF doc said this is very common in CF kids and she just wants to send him to an endocrinologist just to be sure. So I call to make and appointment and I get this terribly rude secretary on the phone. She was talking to me like I was so incompitent that I did not even deserve to be speaking with her on the phone...LOL!! I told her how Marty has CF and pancreatic insufficient and that we are coming in just to get checked out. She asked why on earth I would be bringing him to the endocrinologist if he has CF!! I didn't even know what to say! Sorry for ranting about this I am just totally shook up. Does any one else have this problem with high blood sugar in your little ones? Most of the time he is okay but it is just occasionally. He is on a 3500 cal diet and is always eating (mommy's little piggy)! His growth is doing better but he goes through these times where he recycles a few pounds. He also has been doing terribly on Creon. He is now starting Prevacid beccause they can't up his dose anymore. UGH and now he is coughing like a maniac!! I apologize again for all of my ranting and raving but I am overwhelmed and that secretary definitley made it worse! I hope you are all doing well and surviving the summer heat. I am so glad I have this site to come to and just let it all hang out (LOL). My thoughts and prayers are always with all CFers and their families!!
 
M

martysmom

New member
Hi everyone!
How are you all doing? You guys are always so helpful. My son was recently diagnosed with CF and he seems to be having one problem after the other. He is severly panceatic insufficient and at the last clinic appointment the nutritionist sent us home with a meter to test his blood sugar. For the first few days it was high(reaching 270) and then it has been okay. The CF doc said this is very common in CF kids and she just wants to send him to an endocrinologist just to be sure. So I call to make and appointment and I get this terribly rude secretary on the phone. She was talking to me like I was so incompitent that I did not even deserve to be speaking with her on the phone...LOL!! I told her how Marty has CF and pancreatic insufficient and that we are coming in just to get checked out. She asked why on earth I would be bringing him to the endocrinologist if he has CF!! I didn't even know what to say! Sorry for ranting about this I am just totally shook up. Does any one else have this problem with high blood sugar in your little ones? Most of the time he is okay but it is just occasionally. He is on a 3500 cal diet and is always eating (mommy's little piggy)! His growth is doing better but he goes through these times where he recycles a few pounds. He also has been doing terribly on Creon. He is now starting Prevacid beccause they can't up his dose anymore. UGH and now he is coughing like a maniac!! I apologize again for all of my ranting and raving but I am overwhelmed and that secretary definitley made it worse! I hope you are all doing well and surviving the summer heat. I am so glad I have this site to come to and just let it all hang out (LOL). My thoughts and prayers are always with all CFers and their families!!
 
M

martysmom

New member
Hi everyone!
<br />How are you all doing? You guys are always so helpful. My son was recently diagnosed with CF and he seems to be having one problem after the other. He is severly panceatic insufficient and at the last clinic appointment the nutritionist sent us home with a meter to test his blood sugar. For the first few days it was high(reaching 270) and then it has been okay. The CF doc said this is very common in CF kids and she just wants to send him to an endocrinologist just to be sure. So I call to make and appointment and I get this terribly rude secretary on the phone. She was talking to me like I was so incompitent that I did not even deserve to be speaking with her on the phone...LOL!! I told her how Marty has CF and pancreatic insufficient and that we are coming in just to get checked out. She asked why on earth I would be bringing him to the endocrinologist if he has CF!! I didn't even know what to say! Sorry for ranting about this I am just totally shook up. Does any one else have this problem with high blood sugar in your little ones? Most of the time he is okay but it is just occasionally. He is on a 3500 cal diet and is always eating (mommy's little piggy)! His growth is doing better but he goes through these times where he recycles a few pounds. He also has been doing terribly on Creon. He is now starting Prevacid beccause they can't up his dose anymore. UGH and now he is coughing like a maniac!! I apologize again for all of my ranting and raving but I am overwhelmed and that secretary definitley made it worse! I hope you are all doing well and surviving the summer heat. I am so glad I have this site to come to and just let it all hang out (LOL). My thoughts and prayers are always with all CFers and their families!!
 
V

vbs420

New member
Firstly: 3500 calories?? Creon not working?? Have you tried Ultrase MT20? (I don't know what the US name would be...I'm in Canada.) I attempted Creon twice in the past 8 months, and all I got was diarrhea. Ultrase keeps it firm. What sort of diet? High fat high carb/sugar, no doubt. Well, that's the first two problems right there. And what types of carbohydrates are being consumed? The terrible sugary ones? It's really sad that CF health care hasn't yet caught on that what's bad for "normal" people is equally bad for CFers.

How old is your son?

270 is high. In english that's 15. Does he sleep lots? Is he irritable? You mentioned he's hungry? This is a double hit from the Creon not working, and the bg being so high.

I would strongly recommend seeking a second opinion on diet. CF Dieticians are typically operating from a dated manual which stresses a diet which has made most of the first world terribly out-of-shape and morbidly obese. I too began getting "fat" in my early 20's, and it took YEARS to reverse that damage. I only dipped my BMI below 25 AFTER developing and treating CFrD.

As well, high bg = thicker mucous = more coughing. Geez. Where is your clinic anyway? And that they don't have access to an endocrinologist? And the one they refer you to has no idea why anyone with CF would need an endocrinologist?

Hopefully my experience and what I've learned is helpful for you. Feel free to PM me so we can converse out-of-forum.
 
V

vbs420

New member
Firstly: 3500 calories?? Creon not working?? Have you tried Ultrase MT20? (I don't know what the US name would be...I'm in Canada.) I attempted Creon twice in the past 8 months, and all I got was diarrhea. Ultrase keeps it firm. What sort of diet? High fat high carb/sugar, no doubt. Well, that's the first two problems right there. And what types of carbohydrates are being consumed? The terrible sugary ones? It's really sad that CF health care hasn't yet caught on that what's bad for "normal" people is equally bad for CFers.

How old is your son?

270 is high. In english that's 15. Does he sleep lots? Is he irritable? You mentioned he's hungry? This is a double hit from the Creon not working, and the bg being so high.

I would strongly recommend seeking a second opinion on diet. CF Dieticians are typically operating from a dated manual which stresses a diet which has made most of the first world terribly out-of-shape and morbidly obese. I too began getting "fat" in my early 20's, and it took YEARS to reverse that damage. I only dipped my BMI below 25 AFTER developing and treating CFrD.

As well, high bg = thicker mucous = more coughing. Geez. Where is your clinic anyway? And that they don't have access to an endocrinologist? And the one they refer you to has no idea why anyone with CF would need an endocrinologist?

Hopefully my experience and what I've learned is helpful for you. Feel free to PM me so we can converse out-of-forum.
 
V

vbs420

New member
Firstly: 3500 calories?? Creon not working?? Have you tried Ultrase MT20? (I don't know what the US name would be...I'm in Canada.) I attempted Creon twice in the past 8 months, and all I got was diarrhea. Ultrase keeps it firm. What sort of diet? High fat high carb/sugar, no doubt. Well, that's the first two problems right there. And what types of carbohydrates are being consumed? The terrible sugary ones? It's really sad that CF health care hasn't yet caught on that what's bad for "normal" people is equally bad for CFers.
<br />
<br />How old is your son?
<br />
<br />270 is high. In english that's 15. Does he sleep lots? Is he irritable? You mentioned he's hungry? This is a double hit from the Creon not working, and the bg being so high.
<br />
<br />I would strongly recommend seeking a second opinion on diet. CF Dieticians are typically operating from a dated manual which stresses a diet which has made most of the first world terribly out-of-shape and morbidly obese. I too began getting "fat" in my early 20's, and it took YEARS to reverse that damage. I only dipped my BMI below 25 AFTER developing and treating CFrD.
<br />
<br />As well, high bg = thicker mucous = more coughing. Geez. Where is your clinic anyway? And that they don't have access to an endocrinologist? And the one they refer you to has no idea why anyone with CF would need an endocrinologist?
<br />
<br />Hopefully my experience and what I've learned is helpful for you. Feel free to PM me so we can converse out-of-forum.
 
M

martysmom

New member
Thanks for your response.
I have been saying to the CF doc that I think his appetite is out of control CRAZY! I know a lot of people on here would be so happy if there kids would eat but it has been really hard and to top it he is not gaining that much weight. He has always had weight and height issues but I always attributed it to CF. We always suspected our child had CF but he was a daignostic dillemma. They just recently found his mutations.
His blood sugar has been okay for the past week and there aren't any drastic differences in his diet from week to week. He does not eat any high sugar foods but he does get a lot of fat and salt. He drinks shakes for weight gain and they are very sweet. My son is 4 and a half and he eats brussel sprouts!! He eats everything and is constantly asking for more food!!!
He was on Ultrase MT20 up until about 2 months ago. Ultrase is no longer available to get so we switched to creon. He did fantastic on Ultrase!! He is a bundle of energy. He has shown no symptoms of high blood sugar other than the appetite. He is so happy go lucky.
The endo is in the same place as the cf center. I just think the secretary has lost her mind and needs to not deal with people with sick children.
I'm glad that I am not the only one that thinks creon stinks!! It works better than no enzymes at all but over the maximum dose should be cutting it.
I just hope we get some peace soon with all of this. If he doesn't take in over 3000 cals then he loses weight. He even goes up and down now! I just don't hear of anyone else with little ones with this problem with intermittent episodes of high blood sugar.
Thank you so much for all of your info. and letting me clear my mind a bit. Sorry for the long post. Hope you are doing well!!
 
M

martysmom

New member
Thanks for your response.
I have been saying to the CF doc that I think his appetite is out of control CRAZY! I know a lot of people on here would be so happy if there kids would eat but it has been really hard and to top it he is not gaining that much weight. He has always had weight and height issues but I always attributed it to CF. We always suspected our child had CF but he was a daignostic dillemma. They just recently found his mutations.
His blood sugar has been okay for the past week and there aren't any drastic differences in his diet from week to week. He does not eat any high sugar foods but he does get a lot of fat and salt. He drinks shakes for weight gain and they are very sweet. My son is 4 and a half and he eats brussel sprouts!! He eats everything and is constantly asking for more food!!!
He was on Ultrase MT20 up until about 2 months ago. Ultrase is no longer available to get so we switched to creon. He did fantastic on Ultrase!! He is a bundle of energy. He has shown no symptoms of high blood sugar other than the appetite. He is so happy go lucky.
The endo is in the same place as the cf center. I just think the secretary has lost her mind and needs to not deal with people with sick children.
I'm glad that I am not the only one that thinks creon stinks!! It works better than no enzymes at all but over the maximum dose should be cutting it.
I just hope we get some peace soon with all of this. If he doesn't take in over 3000 cals then he loses weight. He even goes up and down now! I just don't hear of anyone else with little ones with this problem with intermittent episodes of high blood sugar.
Thank you so much for all of your info. and letting me clear my mind a bit. Sorry for the long post. Hope you are doing well!!
 
M

martysmom

New member
Thanks for your response.
<br />I have been saying to the CF doc that I think his appetite is out of control CRAZY! I know a lot of people on here would be so happy if there kids would eat but it has been really hard and to top it he is not gaining that much weight. He has always had weight and height issues but I always attributed it to CF. We always suspected our child had CF but he was a daignostic dillemma. They just recently found his mutations.
<br /> His blood sugar has been okay for the past week and there aren't any drastic differences in his diet from week to week. He does not eat any high sugar foods but he does get a lot of fat and salt. He drinks shakes for weight gain and they are very sweet. My son is 4 and a half and he eats brussel sprouts!! He eats everything and is constantly asking for more food!!!
<br /> He was on Ultrase MT20 up until about 2 months ago. Ultrase is no longer available to get so we switched to creon. He did fantastic on Ultrase!! He is a bundle of energy. He has shown no symptoms of high blood sugar other than the appetite. He is so happy go lucky.
<br />The endo is in the same place as the cf center. I just think the secretary has lost her mind and needs to not deal with people with sick children.
<br />I'm glad that I am not the only one that thinks creon stinks!! It works better than no enzymes at all but over the maximum dose should be cutting it.
<br />I just hope we get some peace soon with all of this. If he doesn't take in over 3000 cals then he loses weight. He even goes up and down now! I just don't hear of anyone else with little ones with this problem with intermittent episodes of high blood sugar.
<br />Thank you so much for all of your info. and letting me clear my mind a bit. Sorry for the long post. Hope you are doing well!!
 
E

ehtansky21

New member
1. I would try Zenpep!!! It is a new enzyme that a lot of people are having great success with. Some people are even going off their acid reducers with them

2. It may be time to look at some different nutritional drinks, most of them have lots of sugar, other people may be able to recommend some that are made with less sugar. I make my boys their own drinks as they get a sugar rush when drinking the pre-made ones. Check out my blog if you want the recipe.

3. You may want to see if there is a different endo you can go to, so you are not annoyed by the secretary.

4. Many CFers do have issues with high blood sugar, but most not until later in life. There are some parents on here though that do have younger kids with diabetes.

blessings,
missa
 
E

ehtansky21

New member
1. I would try Zenpep!!! It is a new enzyme that a lot of people are having great success with. Some people are even going off their acid reducers with them

2. It may be time to look at some different nutritional drinks, most of them have lots of sugar, other people may be able to recommend some that are made with less sugar. I make my boys their own drinks as they get a sugar rush when drinking the pre-made ones. Check out my blog if you want the recipe.

3. You may want to see if there is a different endo you can go to, so you are not annoyed by the secretary.

4. Many CFers do have issues with high blood sugar, but most not until later in life. There are some parents on here though that do have younger kids with diabetes.

blessings,
missa
 
E

ehtansky21

New member
1. I would try Zenpep!!! It is a new enzyme that a lot of people are having great success with. Some people are even going off their acid reducers with them
<br />
<br />2. It may be time to look at some different nutritional drinks, most of them have lots of sugar, other people may be able to recommend some that are made with less sugar. I make my boys their own drinks as they get a sugar rush when drinking the pre-made ones. Check out my blog if you want the recipe.
<br />
<br />3. You may want to see if there is a different endo you can go to, so you are not annoyed by the secretary.
<br />
<br />4. Many CFers do have issues with high blood sugar, but most not until later in life. There are some parents on here though that do have younger kids with diabetes.
<br />
<br />blessings,
<br />missa
<br />
<br />
<br />
 
H

hmw

New member
In response to vbs's post- many people with cf unfortunately DO need to consume an enormous amount of calories, (including a lot of fat, since that is the only way to get the calories into a smaller volume), just to maintain even minimal growth/weight gain. Enzymes may need to be adjusted, acid reducers added, etc, but it's far from unheard of for calorie intake to be enormous for someone with cf to support growth & respiratory health. Some cf dietitians are not current on their understanding of how to best help the kids under their care but to characterize them as a whole in such a negative light is unfair (and untrue.)

<div class="FTQUOTE"><begin quote>I have been saying to the CF doc that I think his appetite is out of control CRAZY! I know a lot of people on here would be so happy if there kids would eat but it has been really hard and to top it he is not gaining that much weight. He has always had weight and height issues but I always attributed it to CF. We always suspected our child had CF but he was a daignostic dillemma. They just recently found his mutations.</end quote></div>
If he's eating and eating and eating and NOT gaining sufficient weight- yes, that IS a cf thing. It's likely caused by his pancreatic insufficiency- it doesn't matter how many calories go in if the food cannot be appropriately absorbed. I'm glad his mutations have finally been identified and that he's now being treated.

I'm sorry that he had to come off an enzyme that was working so well. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I hope the Ultrase is back on the market soon. In the meantime, I'd ask his clinic about trying an acid reducer (i.e. Prevacid) along with the Creon- this can help the enzymes work better, or trying Zenpep or Pancreaze (the other two enzymes currently available) to see if you get better results with one of them.

Re. the endocrinologist- I am so sorry the staff was so misinformed over why your son needed to be seen. Hopefully it was just that one individual and maybe it was a one-time thing...?!? It's pretty clear-cut that someone with suspected diabetes of any kind, cfrd or not, would need to be seen by an endo. Did you tell this person that the cf center told you to call?? I'd call the cf center and ask the nurse to call over there and have a little educational chat w/ that receptionist.

Wishing the very best- please let us know how your little one does. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
H

hmw

New member
In response to vbs's post- many people with cf unfortunately DO need to consume an enormous amount of calories, (including a lot of fat, since that is the only way to get the calories into a smaller volume), just to maintain even minimal growth/weight gain. Enzymes may need to be adjusted, acid reducers added, etc, but it's far from unheard of for calorie intake to be enormous for someone with cf to support growth & respiratory health. Some cf dietitians are not current on their understanding of how to best help the kids under their care but to characterize them as a whole in such a negative light is unfair (and untrue.)

<div class="FTQUOTE"><begin quote>I have been saying to the CF doc that I think his appetite is out of control CRAZY! I know a lot of people on here would be so happy if there kids would eat but it has been really hard and to top it he is not gaining that much weight. He has always had weight and height issues but I always attributed it to CF. We always suspected our child had CF but he was a daignostic dillemma. They just recently found his mutations.</end quote>
If he's eating and eating and eating and NOT gaining sufficient weight- yes, that IS a cf thing. It's likely caused by his pancreatic insufficiency- it doesn't matter how many calories go in if the food cannot be appropriately absorbed. I'm glad his mutations have finally been identified and that he's now being treated.

I'm sorry that he had to come off an enzyme that was working so well. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I hope the Ultrase is back on the market soon. In the meantime, I'd ask his clinic about trying an acid reducer (i.e. Prevacid) along with the Creon- this can help the enzymes work better, or trying Zenpep or Pancreaze (the other two enzymes currently available) to see if you get better results with one of them.

Re. the endocrinologist- I am so sorry the staff was so misinformed over why your son needed to be seen. Hopefully it was just that one individual and maybe it was a one-time thing...?!? It's pretty clear-cut that someone with suspected diabetes of any kind, cfrd or not, would need to be seen by an endo. Did you tell this person that the cf center told you to call?? I'd call the cf center and ask the nurse to call over there and have a little educational chat w/ that receptionist.

Wishing the very best- please let us know how your little one does. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
H

hmw

New member
In response to vbs's post- many people with cf unfortunately DO need to consume an enormous amount of calories, (including a lot of fat, since that is the only way to get the calories into a smaller volume), just to maintain even minimal growth/weight gain. Enzymes may need to be adjusted, acid reducers added, etc, but it's far from unheard of for calorie intake to be enormous for someone with cf to support growth & respiratory health. Some cf dietitians are not current on their understanding of how to best help the kids under their care but to characterize them as a whole in such a negative light is unfair (and untrue.)
<br />
<br /><div class="FTQUOTE"><begin quote>I have been saying to the CF doc that I think his appetite is out of control CRAZY! I know a lot of people on here would be so happy if there kids would eat but it has been really hard and to top it he is not gaining that much weight. He has always had weight and height issues but I always attributed it to CF. We always suspected our child had CF but he was a daignostic dillemma. They just recently found his mutations.</end quote>
<br />If he's eating and eating and eating and NOT gaining sufficient weight- yes, that IS a cf thing. It's likely caused by his pancreatic insufficiency- it doesn't matter how many calories go in if the food cannot be appropriately absorbed. I'm glad his mutations have finally been identified and that he's now being treated.
<br />
<br />I'm sorry that he had to come off an enzyme that was working so well. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I hope the Ultrase is back on the market soon. In the meantime, I'd ask his clinic about trying an acid reducer (i.e. Prevacid) along with the Creon- this can help the enzymes work better, or trying Zenpep or Pancreaze (the other two enzymes currently available) to see if you get better results with one of them.
<br />
<br />Re. the endocrinologist- I am so sorry the staff was so misinformed over why your son needed to be seen. Hopefully it was just that one individual and maybe it was a one-time thing...?!? It's pretty clear-cut that someone with suspected diabetes of any kind, cfrd or not, would need to be seen by an endo. Did you tell this person that the cf center told you to call?? I'd call the cf center and ask the nurse to call over there and have a little educational chat w/ that receptionist.
<br />
<br />Wishing the very best- please let us know how your little one does. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
 
M

martysmom

New member
Thank you so much Harriet. I have always been amazed by my child's vaccuum like abilities. The secretary upset me but I am over it now. She was just not well informed and had no mouth filter. The endo doctor is suppose to be really good and works with our CF doc. We are just going to get him checked out. The doctor has prescribed prevacid, but I think we might try a different enzyme brand if this keeps up. I just can't believe that the non FDA approved enzyme is the one that works!!!! Crazy world!
Hope everyone is doing well today!!
 
M

martysmom

New member
Thank you so much Harriet. I have always been amazed by my child's vaccuum like abilities. The secretary upset me but I am over it now. She was just not well informed and had no mouth filter. The endo doctor is suppose to be really good and works with our CF doc. We are just going to get him checked out. The doctor has prescribed prevacid, but I think we might try a different enzyme brand if this keeps up. I just can't believe that the non FDA approved enzyme is the one that works!!!! Crazy world!
Hope everyone is doing well today!!
 
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