My Friend needs Suggestions

[amyr]

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Below is the facebook status of a friend of mine whose two boys have CF. She has had a really hard year because of this "nasty" disease. I have posted her most "recent" issue and any help, suggestions or ideas from others that have been in her shoes would be GREATLY appreciated.. Thanks<img src="i/expressions/face-icon-small-smile.gif" border="0">
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<strong>" truly doesn't understand how my 7 year old can put away over 3000 calories in one day and still not gain weight or grow taller. And, his doctor wants us to try and squeeze in an extra 500-1000 add'l calories each day. I'm open to suggestions since he already drinks 1/2 & 1/2 (640 cals/cup) at breakfast/dinner and puts it on his cereal. He also takes Pediasure in his lunch. Cystic Fibrosis truly makes me crazy!"</strong>
 
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[amyr]

Below is the facebookstatus of a friend of mine whose two boys have CF. She has had a really hard year because of this "nasty" disease. I have posted her most "recent" issue and any help, suggestions or ideas from others that have been in her shoes would be GREATLY appreciated.. Thanks<img src="i/expressions/face-icon-small-smile.gif" border="0">
<strong></strong>
<strong></strong>
<strong>"truly doesn't understand how my 7 year old can put away over 3000 calories in one day and still not gain weight or grow taller. And, his doctor wants us to try and squeeze in an extra 500-1000 add'l calories each day. I'm open to suggestions since he already drinks 1/2 & 1/2 (640 cals/cup) at breakfast/dinner and puts it on his cereal. He also takes Pediasure in his lunch. Cystic Fibrosis truly makes me crazy!"</strong>

 

[amyr]

<p>
<p>Below is the facebookstatus of a friend of mine whose two boys have CF. She has had a really hard year because of this "nasty" disease. I have posted her most "recent" issue and any help, suggestions or ideas from others that have been in her shoes would be GREATLY appreciated.. Thanks<img src="i/expressions/face-icon-small-smile.gif" border="0">
<p><strong></strong>
<p><strong></strong>
<p><strong>"truly doesn't understand how my 7 year old can put away over 3000 calories in one day and still not gain weight or grow taller. And, his doctor wants us to try and squeeze in an extra 500-1000 add'l calories each day. I'm open to suggestions since he already drinks 1/2 & 1/2 (640 cals/cup) at breakfast/dinner and puts it on his cereal. He also takes Pediasure in his lunch. Cystic Fibrosis truly makes me crazy!"</strong>
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[sdelorenzo]

The one real answer to her question is a feeding tube. I am sure she knows about them and has chosen not to take that step. My daughter was taking in the 2500 calories she needed to gain weight but still wouldn't gain weight at age 5. She went from -5%bmi to 80% in a few months after she had her feeding tube placed. Her pfts also improved dramatically during those few months and have stayed above 110 since. A feeding tube seems scary but the truth is that once it is in place it is a life saver and not scary at all!
Sharon, mom of Sophia, 9 and Jack, 7 both with CF, Grant, 2 and Paige, 7 months both without cf

 

[sdelorenzo]

The one real answer to her question is a feeding tube. I am sure she knows about them and has chosen not to take that step. My daughter was taking in the 2500 calories she needed to gain weight but still wouldn't gain weight at age 5. She went from -5%bmi to 80% in a few months after she had her feeding tube placed. Her pfts also improved dramatically during those few months and have stayed above 110 since. A feeding tube seems scary but the truth is that once it is in place it is a life saver and not scary at all!
Sharon, mom of Sophia, 9 and Jack, 7 both with CF, Grant, 2 and Paige, 7 months both without cf

 

[sdelorenzo]

The one real answer to her question is a feeding tube. I am sure she knows about them and has chosen not to take that step. My daughter was taking in the 2500 calories she needed to gain weight but still wouldn't gain weight at age 5. She went from -5%bmi to 80% in a few months after she had her feeding tube placed. Her pfts also improved dramatically during those few months and have stayed above 110 since. A feeding tube seems scary but the truth is that once it is in place it is a life saver and not scary at all!
<br />Sharon, mom of Sophia, 9 and Jack, 7 both with CF, Grant, 2 and Paige, 7 months both without cf

 

[Ratatosk]

I'm sure she's already doing so, but is he getting enough enzymes? How are his stools. I know we at one time were "lowballing" the number of enzymes DS' needed for certain things. Also, I know of a local boy who is SO pancreatic insufficient -- as a baby was on the maximum # of enzymes and he still never had solid stools --- that his parents give him oral mucomyst to help cut thru the mucus.

 

[Ratatosk]

I'm sure she's already doing so, but is he getting enough enzymes? How are his stools. I know we at one time were "lowballing" the number of enzymes DS' needed for certain things. Also, I know of a local boy who is SO pancreatic insufficient -- as a baby was on the maximum # of enzymes and he still never had solid stools --- that his parents give him oral mucomyst to help cut thru the mucus.

 

[Ratatosk]

I'm sure she's already doing so, but is he getting enough enzymes? How are his stools. I know we at one time were "lowballing" the number of enzymes DS' needed for certain things. Also, I know of a local boy who is SO pancreatic insufficient -- as a baby was on the maximum # of enzymes and he still never had solid stools --- that his parents give him oral mucomyst to help cut thru the mucus.

 

[CysticlyFunny]

Hi there,-

Have they checked his blood sugars? Sometimes early diabetes can cause weight gain problems, even if they are just mildly elevated,although he may be too young,-- it may be something to check out w/ the Dr.

As others have stated, you may be looking at a G-Tube. Also, sometimes more enzymes is not the answer, he may just eventually catch up. ..

And also please do encourage exercise, running, playing outside, swimming, ect it may seem counteractive, but it will simulate his appetite better, thurs being more able to take in more calories, and excellent for his lungs.

 

[CysticlyFunny]

Hi there,-

Have they checked his blood sugars? Sometimes early diabetes can cause weight gain problems, even if they are just mildly elevated,although he may be too young,-- it may be something to check out w/ the Dr.

As others have stated, you may be looking at a G-Tube. Also, sometimes more enzymes is not the answer, he may just eventually catch up. ..

And also please do encourage exercise, running, playing outside, swimming, ect it may seem counteractive, but it will simulate his appetite better, thurs being more able to take in more calories, and excellent for his lungs.

 

[CysticlyFunny]

Hi there,-
<br />
<br />Have they checked his blood sugars? Sometimes early diabetes can cause weight gain problems, even if they are just mildly elevated,although he may be too young,-- it may be something to check out w/ the Dr.
<br />
<br />As others have stated, you may be looking at a G-Tube. Also, sometimes more enzymes is not the answer, he may just eventually catch up. ..
<br />
<br />And also please do encourage exercise, running, playing outside, swimming, ect it may seem counteractive, but it will simulate his appetite better, thurs being more able to take in more calories, and excellent for his lungs.

 

[CysticlyFunny]

-Oh, I should also mention if he is getting any GERD symptoms, or/ gastric acid reflux, even just a little,- he should being taking something for it, as that helps with better absorb of panc.enzymes.

 

[CysticlyFunny]

-Oh, I should also mention if he is getting any GERD symptoms, or/ gastric acid reflux, even just a little,- he should being taking something for it, as that helps with better absorb of panc.enzymes.

 

[CysticlyFunny]

-Oh, I should also mention if he is getting any GERD symptoms, or/ gastric acid reflux, even just a little,- he should being taking something for it, as that helps with better absorb of panc.enzymes.

 

[hmw]

Odds are, if he is not growing and gaining consuming 3,000cal/day, it's going to be really hard getting another 1,000cal into him without severely restricting actual NUTRITIOUS food. Like fruits and vegetables and grains and the real food we need to be healthy in the long term. You do reach a point where only a certain amount of food can be consumed during waking hours. A gtube would allow a large amount of easily absorbed calories (perhaps a predigested formula, much easier to absorb than the supplements made to drink) to be consumed during sleep and would take the pressure off daytime eating.

As already posted- I'd look into the other possible issues- enzyme dosing, add a ppi like Prevacid, do a fasting oral glucose tolerance test- cfrd can be asymptomatic for years but wreak havoc on nutritional status (and lung health), labs can be done to check growth hormone levels, etc.

I'd also consider the possibility of changing up what he drinks, given it's such a large source of calories for him and you want to be sure he's absorbing it- maybe just as an experiment try a different high-calorie beverage at breakfast and supper with a different fat source (maybe the cream in such high amounts is too hard for him to digest and a shake mix added to whole milk would work better?)

 

[hmw]

Odds are, if he is not growing and gaining consuming 3,000cal/day, it's going to be really hard getting another 1,000cal into him without severely restricting actual NUTRITIOUS food. Like fruits and vegetables and grains and the real food we need to be healthy in the long term. You do reach a point where only a certain amount of food can be consumed during waking hours. A gtube would allow a large amount of easily absorbed calories (perhaps a predigested formula, much easier to absorb than the supplements made to drink) to be consumed during sleep and would take the pressure off daytime eating.

As already posted- I'd look into the other possible issues- enzyme dosing, add a ppi like Prevacid, do a fasting oral glucose tolerance test- cfrd can be asymptomatic for years but wreak havoc on nutritional status (and lung health), labs can be done to check growth hormone levels, etc.

I'd also consider the possibility of changing up what he drinks, given it's such a large source of calories for him and you want to be sure he's absorbing it- maybe just as an experiment try a different high-calorie beverage at breakfast and supper with a different fat source (maybe the cream in such high amounts is too hard for him to digest and a shake mix added to whole milk would work better?)

 

[hmw]

Odds are, if he is not growing and gaining consuming 3,000cal/day, it's going to be really hard getting another 1,000cal into him without severely restricting actual NUTRITIOUS food. Like fruits and vegetables and grains and the real food we need to be healthy in the long term. You do reach a point where only a certain amount of food can be consumed during waking hours. A gtube would allow a large amount of easily absorbed calories (perhaps a predigested formula, much easier to absorb than the supplements made to drink) to be consumed during sleep and would take the pressure off daytime eating.
<br />
<br />As already posted- I'd look into the other possible issues- enzyme dosing, add a ppi like Prevacid, do a fasting oral glucose tolerance test- cfrd can be asymptomatic for years but wreak havoc on nutritional status (and lung health), labs can be done to check growth hormone levels, etc.
<br />
<br />I'd also consider the possibility of changing up what he drinks, given it's such a large source of calories for him and you want to be sure he's absorbing it- maybe just as an experiment try a different high-calorie beverage at breakfast and supper with a different fat source (maybe the cream in such high amounts is too hard for him to digest and a shake mix added to whole milk would work better?)