Whether to get a feeding tube or not?

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schmj4910

New member
We have an 18 month old foster son (soon to be adopted!) with CF. He is not gaining the weight he needs to catch-up to the growth curve. He is just below the 3rd percentile curve. We have had him for 11 months and he has had only one cold, so he is doing well health-wise. He has trouble with acid reflux and constipation (both are controlled with medication). He is a typical toddler with picky eating and power struggles. So our efforts at getting him to eat more and to eat higher calorie foods is failing.

My main question is...

Do you think he will "catch-up" once he gets out of this toddler stage? Or should we get a feeding tube now?

I would like to hear from people who have had the same struggles as we have, people who got a feeding tube early in life (what age?), people who gained weight on their own (what are your tricks?), and issues associated with feeding tubes (and solutions). Any advice is greatly appreciated! Thanks!
 
S

schmj4910

New member
We have an 18 month old foster son (soon to be adopted!) with CF. He is not gaining the weight he needs to catch-up to the growth curve. He is just below the 3rd percentile curve. We have had him for 11 months and he has had only one cold, so he is doing well health-wise. He has trouble with acid reflux and constipation (both are controlled with medication). He is a typical toddler with picky eating and power struggles. So our efforts at getting him to eat more and to eat higher calorie foods is failing.

My main question is...

Do you think he will "catch-up" once he gets out of this toddler stage? Or should we get a feeding tube now?

I would like to hear from people who have had the same struggles as we have, people who got a feeding tube early in life (what age?), people who gained weight on their own (what are your tricks?), and issues associated with feeding tubes (and solutions). Any advice is greatly appreciated! Thanks!
 
S

schmj4910

New member
We have an 18 month old foster son (soon to be adopted!) with CF. He is not gaining the weight he needs to catch-up to the growth curve. He is just below the 3rd percentile curve. We have had him for 11 months and he has had only one cold, so he is doing well health-wise. He has trouble with acid reflux and constipation (both are controlled with medication). He is a typical toddler with picky eating and power struggles. So our efforts at getting him to eat more and to eat higher calorie foods is failing.
<br />
<br />My main question is...
<br />
<br />Do you think he will "catch-up" once he gets out of this toddler stage? Or should we get a feeding tube now?
<br />
<br />I would like to hear from people who have had the same struggles as we have, people who got a feeding tube early in life (what age?), people who gained weight on their own (what are your tricks?), and issues associated with feeding tubes (and solutions). Any advice is greatly appreciated! Thanks!
 
T

Treewife

New member
We now have a feeding tube but waited until now when the doctors said it was not an option but a need.

When Ashley was a wee one I pretty much let her eat whatever I could get into her - lots of cheese sticks and slipping boost and ensure into milkshakes that she would drink because of her sisters love of ice cream (peer pressure in a good way)
Our biggest issue is that all over we would hear not to make food or meals a battle but with CF it is a huge deal and pretty much the kid usually wins. There wasn't a way to let her not eat - the doctors would have flipped out!

What does he like to eat? Does he like to dip stuff? Ashley really preferred her peanut butter on something dipped ie carrots (actually tasty) apples, crackers - whcih got the extra colories in. Also I had the scandi shake stuff that is tasteless - put that in EVERYTHING. Also olive oil is our best friend - good fat and you can put it in just about anything.

I fought the tube for a long time. I'm not sure if that was a good idea but it made sense to me at the time. the doctors let me decide because it would have helped but wasn't a have to back then.
 
T

Treewife

New member
We now have a feeding tube but waited until now when the doctors said it was not an option but a need.

When Ashley was a wee one I pretty much let her eat whatever I could get into her - lots of cheese sticks and slipping boost and ensure into milkshakes that she would drink because of her sisters love of ice cream (peer pressure in a good way)
Our biggest issue is that all over we would hear not to make food or meals a battle but with CF it is a huge deal and pretty much the kid usually wins. There wasn't a way to let her not eat - the doctors would have flipped out!

What does he like to eat? Does he like to dip stuff? Ashley really preferred her peanut butter on something dipped ie carrots (actually tasty) apples, crackers - whcih got the extra colories in. Also I had the scandi shake stuff that is tasteless - put that in EVERYTHING. Also olive oil is our best friend - good fat and you can put it in just about anything.

I fought the tube for a long time. I'm not sure if that was a good idea but it made sense to me at the time. the doctors let me decide because it would have helped but wasn't a have to back then.
 
T

Treewife

New member
We now have a feeding tube but waited until now when the doctors said it was not an option but a need.
<br />
<br />When Ashley was a wee one I pretty much let her eat whatever I could get into her - lots of cheese sticks and slipping boost and ensure into milkshakes that she would drink because of her sisters love of ice cream (peer pressure in a good way)
<br />Our biggest issue is that all over we would hear not to make food or meals a battle but with CF it is a huge deal and pretty much the kid usually wins. There wasn't a way to let her not eat - the doctors would have flipped out!
<br />
<br />What does he like to eat? Does he like to dip stuff? Ashley really preferred her peanut butter on something dipped ie carrots (actually tasty) apples, crackers - whcih got the extra colories in. Also I had the scandi shake stuff that is tasteless - put that in EVERYTHING. Also olive oil is our best friend - good fat and you can put it in just about anything.
<br />
<br />I fought the tube for a long time. I'm not sure if that was a good idea but it made sense to me at the time. the doctors let me decide because it would have helped but wasn't a have to back then.
 
S

schmj4910

New member
Treewife - Thanks for the reply! I try to feed him whatever he will eat, which isn't much. His "likes" are always changing! He will usually eat cheese, which is good. Lately he has been eating cut-up bologna. He likes hot dogs, but he has this habit of chewing the food and then not swallowing, which he does with all foods, but especially hot dogs. He likes chips, cereal, popcorn, crackers (sometimes), fries, fish sticks, chicken sticks, peas, Pediasure (350 calorie). Whenever I put peanut butter on something he suddenly won't eat it (he used to like peanut butter). He does like butter, so we use that a lot. I haven't tried olive oil yet, so we'll give that a shot. We tried vegetable oil, but his enzymes couldn't handle that. Yuck! He's not too fond of ice cream yet, I think it is too cold, I'm really hoping he'll like that as he gets older! Who doesn't like ice cream?!? He does like to dip, we use full-fat Ranch dressing, mayonnaise, and tartar sauce. I think I will try to warm up some peanut butter and use it like a dip, like you suggested.

Yes, one of our biggest issues is always hearing "don't worry, he'll eat when he is hungry". I am glad to know that someone else went through the same thing. I also worry about creating some psychological aversion to food, so I try to remain calm and "unconcerned" during meals, but it is very hard! Sometimes he can go for hours without eating!

Is that Scandi shake stuff covered by insurance or did you pay out of pocket? How many calories does that add?

I'm actually very excited about the idea of a feeding tube at night. I watched all of the videos of people who have them. They were very inspiring! But, I don't want to take on another medical device if it is not necessary.

Thank you so much for all of your helpful information!
 
S

schmj4910

New member
Treewife - Thanks for the reply! I try to feed him whatever he will eat, which isn't much. His "likes" are always changing! He will usually eat cheese, which is good. Lately he has been eating cut-up bologna. He likes hot dogs, but he has this habit of chewing the food and then not swallowing, which he does with all foods, but especially hot dogs. He likes chips, cereal, popcorn, crackers (sometimes), fries, fish sticks, chicken sticks, peas, Pediasure (350 calorie). Whenever I put peanut butter on something he suddenly won't eat it (he used to like peanut butter). He does like butter, so we use that a lot. I haven't tried olive oil yet, so we'll give that a shot. We tried vegetable oil, but his enzymes couldn't handle that. Yuck! He's not too fond of ice cream yet, I think it is too cold, I'm really hoping he'll like that as he gets older! Who doesn't like ice cream?!? He does like to dip, we use full-fat Ranch dressing, mayonnaise, and tartar sauce. I think I will try to warm up some peanut butter and use it like a dip, like you suggested.

Yes, one of our biggest issues is always hearing "don't worry, he'll eat when he is hungry". I am glad to know that someone else went through the same thing. I also worry about creating some psychological aversion to food, so I try to remain calm and "unconcerned" during meals, but it is very hard! Sometimes he can go for hours without eating!

Is that Scandi shake stuff covered by insurance or did you pay out of pocket? How many calories does that add?

I'm actually very excited about the idea of a feeding tube at night. I watched all of the videos of people who have them. They were very inspiring! But, I don't want to take on another medical device if it is not necessary.

Thank you so much for all of your helpful information!
 
S

schmj4910

New member
Treewife - Thanks for the reply! I try to feed him whatever he will eat, which isn't much. His "likes" are always changing! He will usually eat cheese, which is good. Lately he has been eating cut-up bologna. He likes hot dogs, but he has this habit of chewing the food and then not swallowing, which he does with all foods, but especially hot dogs. He likes chips, cereal, popcorn, crackers (sometimes), fries, fish sticks, chicken sticks, peas, Pediasure (350 calorie). Whenever I put peanut butter on something he suddenly won't eat it (he used to like peanut butter). He does like butter, so we use that a lot. I haven't tried olive oil yet, so we'll give that a shot. We tried vegetable oil, but his enzymes couldn't handle that. Yuck! He's not too fond of ice cream yet, I think it is too cold, I'm really hoping he'll like that as he gets older! Who doesn't like ice cream?!? He does like to dip, we use full-fat Ranch dressing, mayonnaise, and tartar sauce. I think I will try to warm up some peanut butter and use it like a dip, like you suggested.
<br />
<br />Yes, one of our biggest issues is always hearing "don't worry, he'll eat when he is hungry". I am glad to know that someone else went through the same thing. I also worry about creating some psychological aversion to food, so I try to remain calm and "unconcerned" during meals, but it is very hard! Sometimes he can go for hours without eating!
<br />
<br />Is that Scandi shake stuff covered by insurance or did you pay out of pocket? How many calories does that add?
<br />
<br />I'm actually very excited about the idea of a feeding tube at night. I watched all of the videos of people who have them. They were very inspiring! But, I don't want to take on another medical device if it is not necessary.
<br />
<br />Thank you so much for all of your helpful information!
 
T

Treewife

New member
Ashley hated cold stuff and too slippery stuff (yogurt and ice cream) that's why she did milkshakes - less cold because it was mainly boost but thick so she didn't get the slimey feel on her tongue.

We got the Scandi stuff from our CF nurse. Not sure if it is covered or not.
 
T

Treewife

New member
Ashley hated cold stuff and too slippery stuff (yogurt and ice cream) that's why she did milkshakes - less cold because it was mainly boost but thick so she didn't get the slimey feel on her tongue.

We got the Scandi stuff from our CF nurse. Not sure if it is covered or not.
 
T

Treewife

New member
Ashley hated cold stuff and too slippery stuff (yogurt and ice cream) that's why she did milkshakes - less cold because it was mainly boost but thick so she didn't get the slimey feel on her tongue.
<br />
<br />We got the Scandi stuff from our CF nurse. Not sure if it is covered or not.
 
Y

ymikhale

New member
have you tried coconut oil? It is much easier to digest than other oils and has helped my dd (3 y/o) to go from 25th to 75th percentile in weight. At first i used the flavorless kind, but now i get extra virgin, which is non processed and she does not mind at all
 
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ymikhale

New member
have you tried coconut oil? It is much easier to digest than other oils and has helped my dd (3 y/o) to go from 25th to 75th percentile in weight. At first i used the flavorless kind, but now i get extra virgin, which is non processed and she does not mind at all
 
Y

ymikhale

New member
have you tried coconut oil? It is much easier to digest than other oils and has helped my dd (3 y/o) to go from 25th to 75th percentile in weight. At first i used the flavorless kind, but now i get extra virgin, which is non processed and she does not mind at all
 
S

schmj4910

New member
ymikhale - No, we haven't tried coconut oil yet. I've heard some people mention it, but I haven't picked it up yet. Is it available at a regular grocery store? And I know I will sound like a complete idiot but...what exactly do you do with the oil? I hope we get the same results as you did! That's amazing that she went from 25th to 75th! I'm sending my husband out right now to get some. Thanks for the response!
 
S

schmj4910

New member
ymikhale - No, we haven't tried coconut oil yet. I've heard some people mention it, but I haven't picked it up yet. Is it available at a regular grocery store? And I know I will sound like a complete idiot but...what exactly do you do with the oil? I hope we get the same results as you did! That's amazing that she went from 25th to 75th! I'm sending my husband out right now to get some. Thanks for the response!
 
S

schmj4910

New member
ymikhale - No, we haven't tried coconut oil yet. I've heard some people mention it, but I haven't picked it up yet. Is it available at a regular grocery store? And I know I will sound like a complete idiot but...what exactly do you do with the oil? I hope we get the same results as you did! That's amazing that she went from 25th to 75th! I'm sending my husband out right now to get some. Thanks for the response!
 
Y

ymikhale

New member
schmj4910, i don't knwo where you get it in the US since I am in France now, if i recollect correctly Trader Joe's carries it.

I use it as any regular oil, basically add it to veggies. our nutritionist prescribed adding 1 tea spoon per meal of oil until 2 y/o and then upped it to 1 tbl spoon (of course she never presribed coconut oil, her eyes buldged when i mentioned it).
I used it (and still do) once a day.

I hope it helps.
 
Y

ymikhale

New member
schmj4910, i don't knwo where you get it in the US since I am in France now, if i recollect correctly Trader Joe's carries it.

I use it as any regular oil, basically add it to veggies. our nutritionist prescribed adding 1 tea spoon per meal of oil until 2 y/o and then upped it to 1 tbl spoon (of course she never presribed coconut oil, her eyes buldged when i mentioned it).
I used it (and still do) once a day.

I hope it helps.
 
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