Toddler may need g-tube

M

meteoras69

New member
Hello,

My 14-month-old son, who was diagnosed with CF at 3 weeks of age, has been having weight issues from the start. For the past several months, he has been at the 25% percentile for weight and the 50% percentile for height. His CF center treatment team keeps mentioning that they think he needs a g-tube. I realize the importance of reaching the 50% percentile for weight for CF patients; if my son can't reach that, I know as much as I hate the thought, he'll need a g-tube. I guess I am wondering, is there anything else I can do to help him gain weight? He is allergic to dairy and soy, so that is a diet limitation. His nutritionist at the CF center has him getting most of his nutrition from a 30 calorie per ounce Peptamen Junior drink.....I asked her about adding MCT oil to increase calories, adding flavor packets, and she said she did not think these additions would help....I asked her to recommend some table foods that were high in fat/calories/protein, and she said that if he is allergic to dairy, she really has nothing to recommend. Does anyone have advice? I just don't feel that the nutritionist is being helpful.....but maybe there is really nothing else to try.....any ideas/opinions welcome! Thanks for your help!
 
M

meteoras69

New member
Hello,

My 14-month-old son, who was diagnosed with CF at 3 weeks of age, has been having weight issues from the start. For the past several months, he has been at the 25% percentile for weight and the 50% percentile for height. His CF center treatment team keeps mentioning that they think he needs a g-tube. I realize the importance of reaching the 50% percentile for weight for CF patients; if my son can't reach that, I know as much as I hate the thought, he'll need a g-tube. I guess I am wondering, is there anything else I can do to help him gain weight? He is allergic to dairy and soy, so that is a diet limitation. His nutritionist at the CF center has him getting most of his nutrition from a 30 calorie per ounce Peptamen Junior drink.....I asked her about adding MCT oil to increase calories, adding flavor packets, and she said she did not think these additions would help....I asked her to recommend some table foods that were high in fat/calories/protein, and she said that if he is allergic to dairy, she really has nothing to recommend. Does anyone have advice? I just don't feel that the nutritionist is being helpful.....but maybe there is really nothing else to try.....any ideas/opinions welcome! Thanks for your help!
 
M

meteoras69

New member
Hello,
<br />
<br />My 14-month-old son, who was diagnosed with CF at 3 weeks of age, has been having weight issues from the start. For the past several months, he has been at the 25% percentile for weight and the 50% percentile for height. His CF center treatment team keeps mentioning that they think he needs a g-tube. I realize the importance of reaching the 50% percentile for weight for CF patients; if my son can't reach that, I know as much as I hate the thought, he'll need a g-tube. I guess I am wondering, is there anything else I can do to help him gain weight? He is allergic to dairy and soy, so that is a diet limitation. His nutritionist at the CF center has him getting most of his nutrition from a 30 calorie per ounce Peptamen Junior drink.....I asked her about adding MCT oil to increase calories, adding flavor packets, and she said she did not think these additions would help....I asked her to recommend some table foods that were high in fat/calories/protein, and she said that if he is allergic to dairy, she really has nothing to recommend. Does anyone have advice? I just don't feel that the nutritionist is being helpful.....but maybe there is really nothing else to try.....any ideas/opinions welcome! Thanks for your help!
 
A

Andrea

Guest
Ben (2yrs.) is allergic to dairy as well. He does drink soy but his percentiles are much lower (usually around the 15th-20th) and they have never mentioned a gtube at his clinic. We do add doucal which adds calories to his food and we still do supplement with step 2 soy formula. We use a lot of tofutti products (non dairy sour creams and cream cheese) We also give him an extra vit d supplement on top of the cf source to make up for what he loses from not having dairy. I make lots of chicken for Ben and he also loves fried butter bread and sausage (Make sure the butter doesn't have milk or whey in it). Also if you get the tofutti non dairy ice cream you can make fruit smoothies with it and add a calorie booster to it like the duocal. I wish you luck! I know it is so hard when allergies are involved. Ben is allergic to nuts too. His sister without CF also has tons of food allergies! Cooking in my house is so much fun! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

Andrea

Guest
Ben (2yrs.) is allergic to dairy as well. He does drink soy but his percentiles are much lower (usually around the 15th-20th) and they have never mentioned a gtube at his clinic. We do add doucal which adds calories to his food and we still do supplement with step 2 soy formula. We use a lot of tofutti products (non dairy sour creams and cream cheese) We also give him an extra vit d supplement on top of the cf source to make up for what he loses from not having dairy. I make lots of chicken for Ben and he also loves fried butter bread and sausage (Make sure the butter doesn't have milk or whey in it). Also if you get the tofutti non dairy ice cream you can make fruit smoothies with it and add a calorie booster to it like the duocal. I wish you luck! I know it is so hard when allergies are involved. Ben is allergic to nuts too. His sister without CF also has tons of food allergies! Cooking in my house is so much fun! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

Andrea

Guest
Ben (2yrs.) is allergic to dairy as well. He does drink soy but his percentiles are much lower (usually around the 15th-20th) and they have never mentioned a gtube at his clinic. We do add doucal which adds calories to his food and we still do supplement with step 2 soy formula. We use a lot of tofutti products (non dairy sour creams and cream cheese) We also give him an extra vit d supplement on top of the cf source to make up for what he loses from not having dairy. I make lots of chicken for Ben and he also loves fried butter bread and sausage (Make sure the butter doesn't have milk or whey in it). Also if you get the tofutti non dairy ice cream you can make fruit smoothies with it and add a calorie booster to it like the duocal. I wish you luck! I know it is so hard when allergies are involved. Ben is allergic to nuts too. His sister without CF also has tons of food allergies! Cooking in my house is so much fun! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

SARAHSARAH253

New member
Real fast........We have been right there.....We started adding Coconut Milk to our sons Rice Milk. LOT of Calories in Coconut Milk.

Sarah
 
S

SARAHSARAH253

New member
Real fast........We have been right there.....We started adding Coconut Milk to our sons Rice Milk. LOT of Calories in Coconut Milk.

Sarah
 
S

SARAHSARAH253

New member
Real fast........We have been right there.....We started adding Coconut Milk to our sons Rice Milk. LOT of Calories in Coconut Milk.
<br />
<br />Sarah
 
E

ehtansky21

New member
coconut milk....coconut oil.....rice dream organic rice milk (the brand with the most calories)
olive oil...goats milk

check out my blog for recipes and ideas!!! we do not do soy and do not drink cows milk

blessings,
missa
 
E

ehtansky21

New member
coconut milk....coconut oil.....rice dream organic rice milk (the brand with the most calories)
olive oil...goats milk

check out my blog for recipes and ideas!!! we do not do soy and do not drink cows milk

blessings,
missa
 
E

ehtansky21

New member
coconut milk....coconut oil.....rice dream organic rice milk (the brand with the most calories)
<br />olive oil...goats milk
<br />
<br />check out my blog for recipes and ideas!!! we do not do soy and do not drink cows milk
<br />
<br />blessings,
<br />missa
 
M

Mommafirst

Guest
I dont' really know much about dairy allergies, so I'm not going to put in any suggestions.

I agree with you, though, your nutritionist is NOT being helpful. My daughter has a g-tube, and it has helped a great deal. But whe wasn't hanging out in the 25th percentile of weight, she was off the chart. So I'm not against tubes, but I am against a surgical decision when lifestyle decisions can be tried first.

What is his BMI? I just would hate your kiddo to have surgery when he'll drink the very thing they'd put in the tube. That makes no sense at all. And why wouldn't adding mct oil or coconut oil help? It seems if he'll drink the peptamen jr. and you can boost the calories, that HAS to be better than surgery.

If the nutritionist is less than helpful, you should try those things yourself. Best of luck!!!!
 
M

Mommafirst

Guest
I dont' really know much about dairy allergies, so I'm not going to put in any suggestions.

I agree with you, though, your nutritionist is NOT being helpful. My daughter has a g-tube, and it has helped a great deal. But whe wasn't hanging out in the 25th percentile of weight, she was off the chart. So I'm not against tubes, but I am against a surgical decision when lifestyle decisions can be tried first.

What is his BMI? I just would hate your kiddo to have surgery when he'll drink the very thing they'd put in the tube. That makes no sense at all. And why wouldn't adding mct oil or coconut oil help? It seems if he'll drink the peptamen jr. and you can boost the calories, that HAS to be better than surgery.

If the nutritionist is less than helpful, you should try those things yourself. Best of luck!!!!
 
M

Mommafirst

Guest
I dont' really know much about dairy allergies, so I'm not going to put in any suggestions.
<br />
<br />I agree with you, though, your nutritionist is NOT being helpful. My daughter has a g-tube, and it has helped a great deal. But whe wasn't hanging out in the 25th percentile of weight, she was off the chart. So I'm not against tubes, but I am against a surgical decision when lifestyle decisions can be tried first.
<br />
<br />What is his BMI? I just would hate your kiddo to have surgery when he'll drink the very thing they'd put in the tube. That makes no sense at all. And why wouldn't adding mct oil or coconut oil help? It seems if he'll drink the peptamen jr. and you can boost the calories, that HAS to be better than surgery.
<br />
<br />If the nutritionist is less than helpful, you should try those things yourself. Best of luck!!!!
 
H

hmw

New member
Anyway, MCT fat COULD very well help. It's digested much easier than other fats by kids with cf. And in any case telling you right off that something won't help without even trying it really sits wrong with me!! Getting recipe ideas that are dairy and soy free from online or other sources sounds like a good way to start, and then if needed you can 'doctor them up' to make them higher in fat/calories.

I agree totally with Heather that tube feeding can be completely necessary (we just had to get one for Emily) but when other options have not been completely pursued yet, it doesn't make sense to rush in that direction.
 
H

hmw

New member
Anyway, MCT fat COULD very well help. It's digested much easier than other fats by kids with cf. And in any case telling you right off that something won't help without even trying it really sits wrong with me!! Getting recipe ideas that are dairy and soy free from online or other sources sounds like a good way to start, and then if needed you can 'doctor them up' to make them higher in fat/calories.

I agree totally with Heather that tube feeding can be completely necessary (we just had to get one for Emily) but when other options have not been completely pursued yet, it doesn't make sense to rush in that direction.
 
H

hmw

New member
Anyway, MCT fat COULD very well help. It's digested much easier than other fats by kids with cf. And in any case telling you right off that something won't help without even trying it really sits wrong with me!! Getting recipe ideas that are dairy and soy free from online or other sources sounds like a good way to start, and then if needed you can 'doctor them up' to make them higher in fat/calories.
<br />
<br />I agree totally with Heather that tube feeding can be completely necessary (we just had to get one for Emily) but when other options have not been completely pursued yet, it doesn't make sense to rush in that direction.
 
J

jbrandonAW

New member
Wow, whoever you talked to annoys me.

First go to www.wholesomebabyfood.com or wholesometoddlerfood.com

Next - avacado is a GREAT high fat food. Its wonderful mixed with yogart, banana, anything really. Next you should add butter, oil, infant cereal whatever to everything you can for extra calories.

How was he diagnosed with milk allergy? I just asked b/c my doc said that they can't test until after too (my CF doc is also an allergist)

Also most kids that can't have milk can also have yogart and cheese. You need to encourage eating real foods. They have more calories. Do not give supplements until AFTER he has eaten. Have you try goats milk, almond milk, or eve organic regular milk? Either way you do NOT have to have milk to have a healthy diet.

Also, is your child following their own growth curve??? My daughter is failure to thrive, BUT she is following her own curve, She is far from even the 25%., but my husband and I are tiny. So you need to remember genetics.

All that being said - I have a g-tube and love it! Its taken the stress off of eating.Also when I am sick I don't have to worry about force feeding myself either. I honestly think that g-tube should be standard CF practice.
 
J

jbrandonAW

New member
Wow, whoever you talked to annoys me.

First go to www.wholesomebabyfood.com or wholesometoddlerfood.com

Next - avacado is a GREAT high fat food. Its wonderful mixed with yogart, banana, anything really. Next you should add butter, oil, infant cereal whatever to everything you can for extra calories.

How was he diagnosed with milk allergy? I just asked b/c my doc said that they can't test until after too (my CF doc is also an allergist)

Also most kids that can't have milk can also have yogart and cheese. You need to encourage eating real foods. They have more calories. Do not give supplements until AFTER he has eaten. Have you try goats milk, almond milk, or eve organic regular milk? Either way you do NOT have to have milk to have a healthy diet.

Also, is your child following their own growth curve??? My daughter is failure to thrive, BUT she is following her own curve, She is far from even the 25%., but my husband and I are tiny. So you need to remember genetics.

All that being said - I have a g-tube and love it! Its taken the stress off of eating.Also when I am sick I don't have to worry about force feeding myself either. I honestly think that g-tube should be standard CF practice.
 
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