G Tube

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sdelorenzo

Guest
My daughter had a feeding tube (ng) from age 3 to 7 months old. SUCH a blessing!! It was so wonderful to see her gaining weight and looking healthy. She got the feeding tube pulled because we found out she had a milk allergy that was causing her not to want to eat. She did okay on her weight for a few years and then got a feeding tube two years ago. Once again I am very thankful for the feeding tube. She went from -5% bmi to 75% bmi today. Just sooooo much healthier. It is a hard decision but well worth it in the end.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 3 months no cf
 
S

sdelorenzo

Guest
My daughter had a feeding tube (ng) from age 3 to 7 months old. SUCH a blessing!! It was so wonderful to see her gaining weight and looking healthy. She got the feeding tube pulled because we found out she had a milk allergy that was causing her not to want to eat. She did okay on her weight for a few years and then got a feeding tube two years ago. Once again I am very thankful for the feeding tube. She went from -5% bmi to 75% bmi today. Just sooooo much healthier. It is a hard decision but well worth it in the end.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 3 months no cf
 
S

sdelorenzo

Guest
My daughter had a feeding tube (ng) from age 3 to 7 months old. SUCH a blessing!! It was so wonderful to see her gaining weight and looking healthy. She got the feeding tube pulled because we found out she had a milk allergy that was causing her not to want to eat. She did okay on her weight for a few years and then got a feeding tube two years ago. Once again I am very thankful for the feeding tube. She went from -5% bmi to 75% bmi today. Just sooooo much healthier. It is a hard decision but well worth it in the end.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 3 months no cf
 
S

sdelorenzo

Guest
My daughter had a feeding tube (ng) from age 3 to 7 months old. SUCH a blessing!! It was so wonderful to see her gaining weight and looking healthy. She got the feeding tube pulled because we found out she had a milk allergy that was causing her not to want to eat. She did okay on her weight for a few years and then got a feeding tube two years ago. Once again I am very thankful for the feeding tube. She went from -5% bmi to 75% bmi today. Just sooooo much healthier. It is a hard decision but well worth it in the end.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 3 months no cf
 
S

sdelorenzo

Guest
My daughter had a feeding tube (ng) from age 3 to 7 months old. SUCH a blessing!! It was so wonderful to see her gaining weight and looking healthy. She got the feeding tube pulled because we found out she had a milk allergy that was causing her not to want to eat. She did okay on her weight for a few years and then got a feeding tube two years ago. Once again I am very thankful for the feeding tube. She went from -5% bmi to 75% bmi today. Just sooooo much healthier. It is a hard decision but well worth it in the end.
<br />Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 3 months no cf
 
E

ehtansky21

New member
I would make sure the enzymes are right. Our nutritionist recommended, at a point where we weren't sure how good the enzymes were working, to do a food journal and collect poop for 3-4 days to see how good he was absorbing nutrients.

blessings,
missa
 
E

ehtansky21

New member
I would make sure the enzymes are right. Our nutritionist recommended, at a point where we weren't sure how good the enzymes were working, to do a food journal and collect poop for 3-4 days to see how good he was absorbing nutrients.

blessings,
missa
 
E

ehtansky21

New member
I would make sure the enzymes are right. Our nutritionist recommended, at a point where we weren't sure how good the enzymes were working, to do a food journal and collect poop for 3-4 days to see how good he was absorbing nutrients.

blessings,
missa
 
E

ehtansky21

New member
I would make sure the enzymes are right. Our nutritionist recommended, at a point where we weren't sure how good the enzymes were working, to do a food journal and collect poop for 3-4 days to see how good he was absorbing nutrients.

blessings,
missa
 
E

ehtansky21

New member
I would make sure the enzymes are right. Our nutritionist recommended, at a point where we weren't sure how good the enzymes were working, to do a food journal and collect poop for 3-4 days to see how good he was absorbing nutrients.
<br />
<br />blessings,
<br />missa
 
H

humphrey711

New member
We were facing a G-Tube earlier this year as my 2yr old wasn't where her doctor wanted her. We see a nutritionist from Early Intervention and she came weekly to weigh her and look at what she was eating. These are things that made a big difference for us:
-1tbs of heavy cream added to anything where you use milk.
-Duocal added to everything possible like yogurt, milk, ice cream, baby food.
-Full fat ice cream like Ben and Jerry's.
-Super milk which is a recipe of whole milk, powdered milk, and carnation instant breakfast. I would also add duocal and heavy cream to this.
-If he is eating solid foods I would cook anything you can in oil.

Obviously this only works if he is on whole milk already and if he can tolerate it. We had to work up to some of this stuff with our daughter as it was kind of heavy at first. I also added prune juice and all bran drinks to her diet to help with bowel movements as all this stuff can back things up.

Finally I would recommend a food journal and check the enzyme dose to make sure it is appropriate.

Good luck.
Karen
 
H

humphrey711

New member
We were facing a G-Tube earlier this year as my 2yr old wasn't where her doctor wanted her. We see a nutritionist from Early Intervention and she came weekly to weigh her and look at what she was eating. These are things that made a big difference for us:
-1tbs of heavy cream added to anything where you use milk.
-Duocal added to everything possible like yogurt, milk, ice cream, baby food.
-Full fat ice cream like Ben and Jerry's.
-Super milk which is a recipe of whole milk, powdered milk, and carnation instant breakfast. I would also add duocal and heavy cream to this.
-If he is eating solid foods I would cook anything you can in oil.

Obviously this only works if he is on whole milk already and if he can tolerate it. We had to work up to some of this stuff with our daughter as it was kind of heavy at first. I also added prune juice and all bran drinks to her diet to help with bowel movements as all this stuff can back things up.

Finally I would recommend a food journal and check the enzyme dose to make sure it is appropriate.

Good luck.
Karen
 
H

humphrey711

New member
We were facing a G-Tube earlier this year as my 2yr old wasn't where her doctor wanted her. We see a nutritionist from Early Intervention and she came weekly to weigh her and look at what she was eating. These are things that made a big difference for us:
-1tbs of heavy cream added to anything where you use milk.
-Duocal added to everything possible like yogurt, milk, ice cream, baby food.
-Full fat ice cream like Ben and Jerry's.
-Super milk which is a recipe of whole milk, powdered milk, and carnation instant breakfast. I would also add duocal and heavy cream to this.
-If he is eating solid foods I would cook anything you can in oil.

Obviously this only works if he is on whole milk already and if he can tolerate it. We had to work up to some of this stuff with our daughter as it was kind of heavy at first. I also added prune juice and all bran drinks to her diet to help with bowel movements as all this stuff can back things up.

Finally I would recommend a food journal and check the enzyme dose to make sure it is appropriate.

Good luck.
Karen
 
H

humphrey711

New member
We were facing a G-Tube earlier this year as my 2yr old wasn't where her doctor wanted her. We see a nutritionist from Early Intervention and she came weekly to weigh her and look at what she was eating. These are things that made a big difference for us:
-1tbs of heavy cream added to anything where you use milk.
-Duocal added to everything possible like yogurt, milk, ice cream, baby food.
-Full fat ice cream like Ben and Jerry's.
-Super milk which is a recipe of whole milk, powdered milk, and carnation instant breakfast. I would also add duocal and heavy cream to this.
-If he is eating solid foods I would cook anything you can in oil.

Obviously this only works if he is on whole milk already and if he can tolerate it. We had to work up to some of this stuff with our daughter as it was kind of heavy at first. I also added prune juice and all bran drinks to her diet to help with bowel movements as all this stuff can back things up.

Finally I would recommend a food journal and check the enzyme dose to make sure it is appropriate.

Good luck.
Karen
 
H

humphrey711

New member
We were facing a G-Tube earlier this year as my 2yr old wasn't where her doctor wanted her. We see a nutritionist from Early Intervention and she came weekly to weigh her and look at what she was eating. These are things that made a big difference for us:
<br />-1tbs of heavy cream added to anything where you use milk.
<br />-Duocal added to everything possible like yogurt, milk, ice cream, baby food.
<br />-Full fat ice cream like Ben and Jerry's.
<br />-Super milk which is a recipe of whole milk, powdered milk, and carnation instant breakfast. I would also add duocal and heavy cream to this.
<br />-If he is eating solid foods I would cook anything you can in oil.
<br />
<br />Obviously this only works if he is on whole milk already and if he can tolerate it. We had to work up to some of this stuff with our daughter as it was kind of heavy at first. I also added prune juice and all bran drinks to her diet to help with bowel movements as all this stuff can back things up.
<br />
<br />Finally I would recommend a food journal and check the enzyme dose to make sure it is appropriate.
<br />
<br />Good luck.
<br />Karen
<br />
 
V

valigirl21

Guest
Hi Dori,

My experience is similar to Katie's in that although my son is at >5%ile he is steadily gaining and growing at his own pace. At 4 years old his advances almost dropped off completely and for 2 years he did not grow or gain weight. At age 7 1/2 we were refered to a neurologist for my son's autism, and it changed our lives. He was so horrified that no one but me thought my son's size was a BIG problem. He referred us to an amazing GI (not the current idiot) that did all the work-ups IMMEDIATELY for CF; sweat test, stool tests, etc. Lo and behold-PI! After over 2 years of tweaking and re-evaluating, 5 Boost 1.5's a day w/ 2 pancrecarb MS-8 and one MS-4 w/ each meal he has maintained a pretty constant weight for 4 months; not gained, but not lost either. We had already had the G-Tube discussion. The increase in suppliments and enzymes was the last ditch effort to avoid that, and it worked!

What I'm saying, in my long-winded way is, as I always do surgery should be a last resort, after all other options have been exhausted.
 
V

valigirl21

Guest
Hi Dori,

My experience is similar to Katie's in that although my son is at >5%ile he is steadily gaining and growing at his own pace. At 4 years old his advances almost dropped off completely and for 2 years he did not grow or gain weight. At age 7 1/2 we were refered to a neurologist for my son's autism, and it changed our lives. He was so horrified that no one but me thought my son's size was a BIG problem. He referred us to an amazing GI (not the current idiot) that did all the work-ups IMMEDIATELY for CF; sweat test, stool tests, etc. Lo and behold-PI! After over 2 years of tweaking and re-evaluating, 5 Boost 1.5's a day w/ 2 pancrecarb MS-8 and one MS-4 w/ each meal he has maintained a pretty constant weight for 4 months; not gained, but not lost either. We had already had the G-Tube discussion. The increase in suppliments and enzymes was the last ditch effort to avoid that, and it worked!

What I'm saying, in my long-winded way is, as I always do surgery should be a last resort, after all other options have been exhausted.
 
V

valigirl21

Guest
Hi Dori,

My experience is similar to Katie's in that although my son is at >5%ile he is steadily gaining and growing at his own pace. At 4 years old his advances almost dropped off completely and for 2 years he did not grow or gain weight. At age 7 1/2 we were refered to a neurologist for my son's autism, and it changed our lives. He was so horrified that no one but me thought my son's size was a BIG problem. He referred us to an amazing GI (not the current idiot) that did all the work-ups IMMEDIATELY for CF; sweat test, stool tests, etc. Lo and behold-PI! After over 2 years of tweaking and re-evaluating, 5 Boost 1.5's a day w/ 2 pancrecarb MS-8 and one MS-4 w/ each meal he has maintained a pretty constant weight for 4 months; not gained, but not lost either. We had already had the G-Tube discussion. The increase in suppliments and enzymes was the last ditch effort to avoid that, and it worked!

What I'm saying, in my long-winded way is, as I always do surgery should be a last resort, after all other options have been exhausted.
 
V

valigirl21

Guest
Hi Dori,

My experience is similar to Katie's in that although my son is at >5%ile he is steadily gaining and growing at his own pace. At 4 years old his advances almost dropped off completely and for 2 years he did not grow or gain weight. At age 7 1/2 we were refered to a neurologist for my son's autism, and it changed our lives. He was so horrified that no one but me thought my son's size was a BIG problem. He referred us to an amazing GI (not the current idiot) that did all the work-ups IMMEDIATELY for CF; sweat test, stool tests, etc. Lo and behold-PI! After over 2 years of tweaking and re-evaluating, 5 Boost 1.5's a day w/ 2 pancrecarb MS-8 and one MS-4 w/ each meal he has maintained a pretty constant weight for 4 months; not gained, but not lost either. We had already had the G-Tube discussion. The increase in suppliments and enzymes was the last ditch effort to avoid that, and it worked!

What I'm saying, in my long-winded way is, as I always do surgery should be a last resort, after all other options have been exhausted.
 
V

valigirl21

Guest
Hi Dori,
<br />
<br />My experience is similar to Katie's in that although my son is at >5%ile he is steadily gaining and growing at his own pace. At 4 years old his advances almost dropped off completely and for 2 years he did not grow or gain weight. At age 7 1/2 we were refered to a neurologist for my son's autism, and it changed our lives. He was so horrified that no one but me thought my son's size was a BIG problem. He referred us to an amazing GI (not the current idiot) that did all the work-ups IMMEDIATELY for CF; sweat test, stool tests, etc. Lo and behold-PI! After over 2 years of tweaking and re-evaluating, 5 Boost 1.5's a day w/ 2 pancrecarb MS-8 and one MS-4 w/ each meal he has maintained a pretty constant weight for 4 months; not gained, but not lost either. We had already had the G-Tube discussion. The increase in suppliments and enzymes was the last ditch effort to avoid that, and it worked!
<br />
<br />What I'm saying, in my long-winded way is, as I always do surgery should be a last resort, after all other options have been exhausted.
 
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