Feeding tube for 5 1/2 month Infant

[Keirasmom]

Keira is on Pregestimil and we do make it 24 calorie, but at her last CF appointment she had lost weight. I have been trying to calculate how many calories a day she gets and it is 550 to 600 calories a day.
Keira had an ostomy bag for about 9 1/2 weeks and it was hard..... it constantly came off..... I just keep saying "not one more thing!"....
I feel like I need to talk to my Doc more in depth about this feeding tube...
Thanks!

 

[usedtobeinca]

Kierasmom,
Our son was on Pregestimil until recently - (and perhaps will go back if his new formula doesn't pan out) [Now we're on Enfamil ProSobee - yay!]. We had an NG tube and feeding pump until Thomas' 3rd month. You probably don't want to set the feed to more than 40-45cc/hr as we had problems with the "topping off" issue above that. We ran it at night and divided Thomas' remaining food budget by the number of hours during the night to ensure he made goal (I think goal was 750cc at the time). We were mixing it to 24 cal and then bumping it to 26 cal by adding a powdered glocose called Polycose. Ask your dietitian about this recipe:

1 cup packed (ish) Pregestimil
23 oz water
2Tbsp + 1tsp Polycose

This took our little on from the 10th - ish percentile to now the 50th in weight in 4 months. Have you doc or dietitian look into Neocate if Pregestimil isn't working. It's pricey - but I think further pre-broken down than Pregestimil.

I'm with you on the ostomy bag - a real bear. Our son was reconnected in August - thank God! Are you still battling the bag? Some days were better than others with the tube - but overall it worked. Fitting it into routine is important. Typically Thomas would've had his last round of treatments, eaten and gone to bed for a little while before we hooked him up and started the tube feed.

Good luck.

 

[usedtobeinca]

Kierasmom,
Our son was on Pregestimil until recently - (and perhaps will go back if his new formula doesn't pan out) [Now we're on Enfamil ProSobee - yay!]. We had an NG tube and feeding pump until Thomas' 3rd month. You probably don't want to set the feed to more than 40-45cc/hr as we had problems with the "topping off" issue above that. We ran it at night and divided Thomas' remaining food budget by the number of hours during the night to ensure he made goal (I think goal was 750cc at the time). We were mixing it to 24 cal and then bumping it to 26 cal by adding a powdered glocose called Polycose. Ask your dietitian about this recipe:

1 cup packed (ish) Pregestimil
23 oz water
2Tbsp + 1tsp Polycose

This took our little on from the 10th - ish percentile to now the 50th in weight in 4 months. Have you doc or dietitian look into Neocate if Pregestimil isn't working. It's pricey - but I think further pre-broken down than Pregestimil.

I'm with you on the ostomy bag - a real bear. Our son was reconnected in August - thank God! Are you still battling the bag? Some days were better than others with the tube - but overall it worked. Fitting it into routine is important. Typically Thomas would've had his last round of treatments, eaten and gone to bed for a little while before we hooked him up and started the tube feed.

Good luck.

 

[usedtobeinca]

Kierasmom,
Our son was on Pregestimil until recently - (and perhaps will go back if his new formula doesn't pan out) [Now we're on Enfamil ProSobee - yay!]. We had an NG tube and feeding pump until Thomas' 3rd month. You probably don't want to set the feed to more than 40-45cc/hr as we had problems with the "topping off" issue above that. We ran it at night and divided Thomas' remaining food budget by the number of hours during the night to ensure he made goal (I think goal was 750cc at the time). We were mixing it to 24 cal and then bumping it to 26 cal by adding a powdered glocose called Polycose. Ask your dietitian about this recipe:

1 cup packed (ish) Pregestimil
23 oz water
2Tbsp + 1tsp Polycose

This took our little on from the 10th - ish percentile to now the 50th in weight in 4 months. Have you doc or dietitian look into Neocate if Pregestimil isn't working. It's pricey - but I think further pre-broken down than Pregestimil.

I'm with you on the ostomy bag - a real bear. Our son was reconnected in August - thank God! Are you still battling the bag? Some days were better than others with the tube - but overall it worked. Fitting it into routine is important. Typically Thomas would've had his last round of treatments, eaten and gone to bed for a little while before we hooked him up and started the tube feed.

Good luck.

 

[JRPandTJP]

It is not always calorie intake that is the issue (though it can be of course). Gut inflammation can hinder digestion and be a factor in malabsorption of nutrients.

One thing to try would be to reduce the inflammation in the gut using a probiotic. We had our son on one since seven weeks and it really helped alot with weight. This can help reduce inflammation and promotes healthy bacteria which aids in digestion. A bit of DHA/Omega 3 may also aid in reducing inflamation. We simply added this to his applesauce daily and still do (he's 2 1/2 now).

Another thing to consider would be oral GSH + Curcumin in small doses. It can also help with weight gain as it reduces inflammation and increases appetite. You will have to research it on your own but in my experience these things have done the most to help our son go from 10% to 50% in weight.

There are resources on the site link below if you'd like to research these things further for your child. Our son was on the NG tube at diagnosis and again at 8 months old when he was unable to eat orally for 2 weeks due to RSV. He has been fine since and we really attribute it to an overall anti-inflammatory diet and supplement program.

Best wishes,

 

[JRPandTJP]

It is not always calorie intake that is the issue (though it can be of course). Gut inflammation can hinder digestion and be a factor in malabsorption of nutrients.

One thing to try would be to reduce the inflammation in the gut using a probiotic. We had our son on one since seven weeks and it really helped alot with weight. This can help reduce inflammation and promotes healthy bacteria which aids in digestion. A bit of DHA/Omega 3 may also aid in reducing inflamation. We simply added this to his applesauce daily and still do (he's 2 1/2 now).

Another thing to consider would be oral GSH + Curcumin in small doses. It can also help with weight gain as it reduces inflammation and increases appetite. You will have to research it on your own but in my experience these things have done the most to help our son go from 10% to 50% in weight.

There are resources on the site link below if you'd like to research these things further for your child. Our son was on the NG tube at diagnosis and again at 8 months old when he was unable to eat orally for 2 weeks due to RSV. He has been fine since and we really attribute it to an overall anti-inflammatory diet and supplement program.

Best wishes,

 

[JRPandTJP]

It is not always calorie intake that is the issue (though it can be of course). Gut inflammation can hinder digestion and be a factor in malabsorption of nutrients.

One thing to try would be to reduce the inflammation in the gut using a probiotic. We had our son on one since seven weeks and it really helped alot with weight. This can help reduce inflammation and promotes healthy bacteria which aids in digestion. A bit of DHA/Omega 3 may also aid in reducing inflamation. We simply added this to his applesauce daily and still do (he's 2 1/2 now).

Another thing to consider would be oral GSH + Curcumin in small doses. It can also help with weight gain as it reduces inflammation and increases appetite. You will have to research it on your own but in my experience these things have done the most to help our son go from 10% to 50% in weight.

There are resources on the site link below if you'd like to research these things further for your child. Our son was on the NG tube at diagnosis and again at 8 months old when he was unable to eat orally for 2 weeks due to RSV. He has been fine since and we really attribute it to an overall anti-inflammatory diet and supplement program.

Best wishes,

 

[jltopple]

Hi, my son had an ng tube and now dr is pushing for g-tube even though he is gaining but slowly. I just read your post and now i am concerned that it may not be effective. The last five days of his ng tube he lost an ounce so I am not sure having surgery is a good idea. When did you start Ella Care? He eats ALOT of food and I find it horrible that we cant do something else with his food to fatten him up.

Jen

 

[jltopple]

Hi, my son had an ng tube and now dr is pushing for g-tube even though he is gaining but slowly. I just read your post and now i am concerned that it may not be effective. The last five days of his ng tube he lost an ounce so I am not sure having surgery is a good idea. When did you start Ella Care? He eats ALOT of food and I find it horrible that we cant do something else with his food to fatten him up.

Jen

 

[jltopple]

Hi, my son had an ng tube and now dr is pushing for g-tube even though he is gaining but slowly. I just read your post and now i am concerned that it may not be effective. The last five days of his ng tube he lost an ounce so I am not sure having surgery is a good idea. When did you start Ella Care? He eats ALOT of food and I find it horrible that we cant do something else with his food to fatten him up.

Jen

 

[jltopple]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jltopple</b></i>

Hi, my son had an ng tube and now dr is pushing for g-tube even though he is gaining but slowly. I just read your post and now i am concerned that it may not be effective. The last five days of his ng tube he lost an ounce so I am not sure having surgery is a good idea. When did you start Ella Care? He eats ALOT of food and I find it horrible that we cant do something else with his food to fatten him up.
Also I am very concerned why he cannot have his ng tube back...he told us after having it 8 weeks that is all you cant use it again.


Jen</end quote></div>

 

[jltopple]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jltopple</b></i>

Hi, my son had an ng tube and now dr is pushing for g-tube even though he is gaining but slowly. I just read your post and now i am concerned that it may not be effective. The last five days of his ng tube he lost an ounce so I am not sure having surgery is a good idea. When did you start Ella Care? He eats ALOT of food and I find it horrible that we cant do something else with his food to fatten him up.
Also I am very concerned why he cannot have his ng tube back...he told us after having it 8 weeks that is all you cant use it again.


Jen</end quote></div>

 

[jltopple]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jltopple</b></i>

Hi, my son had an ng tube and now dr is pushing for g-tube even though he is gaining but slowly. I just read your post and now i am concerned that it may not be effective. The last five days of his ng tube he lost an ounce so I am not sure having surgery is a good idea. When did you start Ella Care? He eats ALOT of food and I find it horrible that we cant do something else with his food to fatten him up.
Also I am very concerned why he cannot have his ng tube back...he told us after having it 8 weeks that is all you cant use it again.


Jen</end quote></div>