feeding frenzy!

R

rprince

Guest
Hi! I am new to the site and think it's fabulous. I am glad to have joined b/c I can see from the postings that I will learn a lot, and take comfort that people have had similar experiences and made it through!

My son was diagnosed inutero, but having a 7year old already and knowing the joy of having a child there was no other choice but to have the handsome prince! My husband and I found out that there was a 15% chance that our little guy could have a blockage in his intestines due to the CF, and guess what, it actually happened. After he was born he was in the hospital for 2 1/2 months, underwent 2 surgeries and had 40cm of intestines removed. He's doing fine now (no feeding tube was necessary).

My concern is his eating habits. Our doctors told us that kids w/ CF have ravenous appetites, but our son has no interest in eating more than his little belly can take. So far he is growing decently (25th to 50th percentile). So, I don't know whether to worry about failure to thrive or if his enzymes are working as they should. He eats less than the experts say a 6 month old w/o CF should be ingesting. It's really frustrating! Then we examine his diaper like we're in the business of forensic science trying to decipher if he's digesting everything or not.

Does anyone have any suggestions? Has anyone been in this position before to give me some advice? I'd like to know if his eating habits are normal. Any response would be helpful!
Thanks!!
 
R

rprince

Guest
Hi! I am new to the site and think it's fabulous. I am glad to have joined b/c I can see from the postings that I will learn a lot, and take comfort that people have had similar experiences and made it through!

My son was diagnosed inutero, but having a 7year old already and knowing the joy of having a child there was no other choice but to have the handsome prince! My husband and I found out that there was a 15% chance that our little guy could have a blockage in his intestines due to the CF, and guess what, it actually happened. After he was born he was in the hospital for 2 1/2 months, underwent 2 surgeries and had 40cm of intestines removed. He's doing fine now (no feeding tube was necessary).

My concern is his eating habits. Our doctors told us that kids w/ CF have ravenous appetites, but our son has no interest in eating more than his little belly can take. So far he is growing decently (25th to 50th percentile). So, I don't know whether to worry about failure to thrive or if his enzymes are working as they should. He eats less than the experts say a 6 month old w/o CF should be ingesting. It's really frustrating! Then we examine his diaper like we're in the business of forensic science trying to decipher if he's digesting everything or not.

Does anyone have any suggestions? Has anyone been in this position before to give me some advice? I'd like to know if his eating habits are normal. Any response would be helpful!
Thanks!!
 
R

rprince

Guest
Hi! I am new to the site and think it's fabulous. I am glad to have joined b/c I can see from the postings that I will learn a lot, and take comfort that people have had similar experiences and made it through!

My son was diagnosed inutero, but having a 7year old already and knowing the joy of having a child there was no other choice but to have the handsome prince! My husband and I found out that there was a 15% chance that our little guy could have a blockage in his intestines due to the CF, and guess what, it actually happened. After he was born he was in the hospital for 2 1/2 months, underwent 2 surgeries and had 40cm of intestines removed. He's doing fine now (no feeding tube was necessary).

My concern is his eating habits. Our doctors told us that kids w/ CF have ravenous appetites, but our son has no interest in eating more than his little belly can take. So far he is growing decently (25th to 50th percentile). So, I don't know whether to worry about failure to thrive or if his enzymes are working as they should. He eats less than the experts say a 6 month old w/o CF should be ingesting. It's really frustrating! Then we examine his diaper like we're in the business of forensic science trying to decipher if he's digesting everything or not.

Does anyone have any suggestions? Has anyone been in this position before to give me some advice? I'd like to know if his eating habits are normal. Any response would be helpful!
Thanks!!
 
R

rprince

Guest
Hi! I am new to the site and think it's fabulous. I am glad to have joined b/c I can see from the postings that I will learn a lot, and take comfort that people have had similar experiences and made it through!

My son was diagnosed inutero, but having a 7year old already and knowing the joy of having a child there was no other choice but to have the handsome prince! My husband and I found out that there was a 15% chance that our little guy could have a blockage in his intestines due to the CF, and guess what, it actually happened. After he was born he was in the hospital for 2 1/2 months, underwent 2 surgeries and had 40cm of intestines removed. He's doing fine now (no feeding tube was necessary).

My concern is his eating habits. Our doctors told us that kids w/ CF have ravenous appetites, but our son has no interest in eating more than his little belly can take. So far he is growing decently (25th to 50th percentile). So, I don't know whether to worry about failure to thrive or if his enzymes are working as they should. He eats less than the experts say a 6 month old w/o CF should be ingesting. It's really frustrating! Then we examine his diaper like we're in the business of forensic science trying to decipher if he's digesting everything or not.

Does anyone have any suggestions? Has anyone been in this position before to give me some advice? I'd like to know if his eating habits are normal. Any response would be helpful!
Thanks!!
 
R

rprince

Guest
Hi! I am new to the site and think it's fabulous. I am glad to have joined b/c I can see from the postings that I will learn a lot, and take comfort that people have had similar experiences and made it through!

My son was diagnosed inutero, but having a 7year old already and knowing the joy of having a child there was no other choice but to have the handsome prince! My husband and I found out that there was a 15% chance that our little guy could have a blockage in his intestines due to the CF, and guess what, it actually happened. After he was born he was in the hospital for 2 1/2 months, underwent 2 surgeries and had 40cm of intestines removed. He's doing fine now (no feeding tube was necessary).

My concern is his eating habits. Our doctors told us that kids w/ CF have ravenous appetites, but our son has no interest in eating more than his little belly can take. So far he is growing decently (25th to 50th percentile). So, I don't know whether to worry about failure to thrive or if his enzymes are working as they should. He eats less than the experts say a 6 month old w/o CF should be ingesting. It's really frustrating! Then we examine his diaper like we're in the business of forensic science trying to decipher if he's digesting everything or not.

Does anyone have any suggestions? Has anyone been in this position before to give me some advice? I'd like to know if his eating habits are normal. Any response would be helpful!
Thanks!!
 
S

sdelorenzo

Guest
Hello and welcome! Well it seems like you have found out that drs are not always right. A lot of cf kids are not hungry and don't eat very much. My daughter has always had problems with "eating enough." It could be that for some with cf eating is associated with stomach discomfort. Who knows!?! My best advice after dealing with this issue for the past six years is to try not worry about it. Hard, I know. But stressing out about if your baby eats what the dietician said they need to eat won't cause your baby to eat more. It will end up just doing the opposite. If our kids see us stressing out about it and forcing food, then they back off eating. Especially why worry if they are not getting the recommended amount when they are gaining well. Just offer high calorie, nutritious foods at appropriate times. That is all you can do. The children are the ones who decide how much. Also, don't be afraid to give plenty of fruits and veggies even though they aren't high in calories and fat.

My son who also has cf has never taken in as many calories for what a child with cf should. But he is consistently in the 50-60% for bmi. He actually eats less than I think kids without cf eat, but he gains, so why worry? He obviously is eating enough for him. That is what is important. When I found out during my second pregnancy that my son also had cf, I was determined not to help create all of the eating problems my first child had. A really good book that helped me calm down about getting my child to eat enough was Child of Mine by Ellyn Satter. I highly recommend it for any parent, not just cf parents. You can get it on Amazon.com
You are at a good point in instilling good eating habits for your baby. I think from 9 months to 18 months is very important in allowing THEM to experiment with feeding themselves and learning to enjoy eating. Don't worry he doesn't get enough in, he will in time.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
Hello and welcome! Well it seems like you have found out that drs are not always right. A lot of cf kids are not hungry and don't eat very much. My daughter has always had problems with "eating enough." It could be that for some with cf eating is associated with stomach discomfort. Who knows!?! My best advice after dealing with this issue for the past six years is to try not worry about it. Hard, I know. But stressing out about if your baby eats what the dietician said they need to eat won't cause your baby to eat more. It will end up just doing the opposite. If our kids see us stressing out about it and forcing food, then they back off eating. Especially why worry if they are not getting the recommended amount when they are gaining well. Just offer high calorie, nutritious foods at appropriate times. That is all you can do. The children are the ones who decide how much. Also, don't be afraid to give plenty of fruits and veggies even though they aren't high in calories and fat.

My son who also has cf has never taken in as many calories for what a child with cf should. But he is consistently in the 50-60% for bmi. He actually eats less than I think kids without cf eat, but he gains, so why worry? He obviously is eating enough for him. That is what is important. When I found out during my second pregnancy that my son also had cf, I was determined not to help create all of the eating problems my first child had. A really good book that helped me calm down about getting my child to eat enough was Child of Mine by Ellyn Satter. I highly recommend it for any parent, not just cf parents. You can get it on Amazon.com
You are at a good point in instilling good eating habits for your baby. I think from 9 months to 18 months is very important in allowing THEM to experiment with feeding themselves and learning to enjoy eating. Don't worry he doesn't get enough in, he will in time.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
Hello and welcome! Well it seems like you have found out that drs are not always right. A lot of cf kids are not hungry and don't eat very much. My daughter has always had problems with "eating enough." It could be that for some with cf eating is associated with stomach discomfort. Who knows!?! My best advice after dealing with this issue for the past six years is to try not worry about it. Hard, I know. But stressing out about if your baby eats what the dietician said they need to eat won't cause your baby to eat more. It will end up just doing the opposite. If our kids see us stressing out about it and forcing food, then they back off eating. Especially why worry if they are not getting the recommended amount when they are gaining well. Just offer high calorie, nutritious foods at appropriate times. That is all you can do. The children are the ones who decide how much. Also, don't be afraid to give plenty of fruits and veggies even though they aren't high in calories and fat.

My son who also has cf has never taken in as many calories for what a child with cf should. But he is consistently in the 50-60% for bmi. He actually eats less than I think kids without cf eat, but he gains, so why worry? He obviously is eating enough for him. That is what is important. When I found out during my second pregnancy that my son also had cf, I was determined not to help create all of the eating problems my first child had. A really good book that helped me calm down about getting my child to eat enough was Child of Mine by Ellyn Satter. I highly recommend it for any parent, not just cf parents. You can get it on Amazon.com
You are at a good point in instilling good eating habits for your baby. I think from 9 months to 18 months is very important in allowing THEM to experiment with feeding themselves and learning to enjoy eating. Don't worry he doesn't get enough in, he will in time.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
Hello and welcome! Well it seems like you have found out that drs are not always right. A lot of cf kids are not hungry and don't eat very much. My daughter has always had problems with "eating enough." It could be that for some with cf eating is associated with stomach discomfort. Who knows!?! My best advice after dealing with this issue for the past six years is to try not worry about it. Hard, I know. But stressing out about if your baby eats what the dietician said they need to eat won't cause your baby to eat more. It will end up just doing the opposite. If our kids see us stressing out about it and forcing food, then they back off eating. Especially why worry if they are not getting the recommended amount when they are gaining well. Just offer high calorie, nutritious foods at appropriate times. That is all you can do. The children are the ones who decide how much. Also, don't be afraid to give plenty of fruits and veggies even though they aren't high in calories and fat.

My son who also has cf has never taken in as many calories for what a child with cf should. But he is consistently in the 50-60% for bmi. He actually eats less than I think kids without cf eat, but he gains, so why worry? He obviously is eating enough for him. That is what is important. When I found out during my second pregnancy that my son also had cf, I was determined not to help create all of the eating problems my first child had. A really good book that helped me calm down about getting my child to eat enough was Child of Mine by Ellyn Satter. I highly recommend it for any parent, not just cf parents. You can get it on Amazon.com
You are at a good point in instilling good eating habits for your baby. I think from 9 months to 18 months is very important in allowing THEM to experiment with feeding themselves and learning to enjoy eating. Don't worry he doesn't get enough in, he will in time.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
Hello and welcome! Well it seems like you have found out that drs are not always right. A lot of cf kids are not hungry and don't eat very much. My daughter has always had problems with "eating enough." It could be that for some with cf eating is associated with stomach discomfort. Who knows!?! My best advice after dealing with this issue for the past six years is to try not worry about it. Hard, I know. But stressing out about if your baby eats what the dietician said they need to eat won't cause your baby to eat more. It will end up just doing the opposite. If our kids see us stressing out about it and forcing food, then they back off eating. Especially why worry if they are not getting the recommended amount when they are gaining well. Just offer high calorie, nutritious foods at appropriate times. That is all you can do. The children are the ones who decide how much. Also, don't be afraid to give plenty of fruits and veggies even though they aren't high in calories and fat.

My son who also has cf has never taken in as many calories for what a child with cf should. But he is consistently in the 50-60% for bmi. He actually eats less than I think kids without cf eat, but he gains, so why worry? He obviously is eating enough for him. That is what is important. When I found out during my second pregnancy that my son also had cf, I was determined not to help create all of the eating problems my first child had. A really good book that helped me calm down about getting my child to eat enough was Child of Mine by Ellyn Satter. I highly recommend it for any parent, not just cf parents. You can get it on Amazon.com
You are at a good point in instilling good eating habits for your baby. I think from 9 months to 18 months is very important in allowing THEM to experiment with feeding themselves and learning to enjoy eating. Don't worry he doesn't get enough in, he will in time.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf
 
W

wuffles

New member
I wouldn't worry at all if his weight is fine. Everyone (CF or not) requires a different amount of calories to sustain their weight.

You will probably find that throughout your son's life, your doctor will make a lot of generalisations about what he "should" or "should not" be doing. Some of them will be right and some will be wrong. CF affects people in such different ways that we just have to learn what is right for "us". You'll get there! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

wuffles

New member
I wouldn't worry at all if his weight is fine. Everyone (CF or not) requires a different amount of calories to sustain their weight.

You will probably find that throughout your son's life, your doctor will make a lot of generalisations about what he "should" or "should not" be doing. Some of them will be right and some will be wrong. CF affects people in such different ways that we just have to learn what is right for "us". You'll get there! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

wuffles

New member
I wouldn't worry at all if his weight is fine. Everyone (CF or not) requires a different amount of calories to sustain their weight.

You will probably find that throughout your son's life, your doctor will make a lot of generalisations about what he "should" or "should not" be doing. Some of them will be right and some will be wrong. CF affects people in such different ways that we just have to learn what is right for "us". You'll get there! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

wuffles

New member
I wouldn't worry at all if his weight is fine. Everyone (CF or not) requires a different amount of calories to sustain their weight.

You will probably find that throughout your son's life, your doctor will make a lot of generalisations about what he "should" or "should not" be doing. Some of them will be right and some will be wrong. CF affects people in such different ways that we just have to learn what is right for "us". You'll get there! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

wuffles

New member
I wouldn't worry at all if his weight is fine. Everyone (CF or not) requires a different amount of calories to sustain their weight.

You will probably find that throughout your son's life, your doctor will make a lot of generalisations about what he "should" or "should not" be doing. Some of them will be right and some will be wrong. CF affects people in such different ways that we just have to learn what is right for "us". You'll get there! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
DS was/is the same way. We'd be told by the dietician that he should drink so many ounces of formula and he wouldn't even come close; however, we were able to maintain 50th percentile. There were times when we'd bump up the calories in his formula -- had a recipe from the hospital for a greater ratio of powder to water.

If I found something he'd like -- whole milk yogurt, I'd shovel it in. Even if it meant he was eating the same thing every day -- think he once ate spagettios for lunch and supper for several weeks, I'd feed it to him. We do give him whole milk, use cream, butter and olive oil as additions to his regular foods. But he's just not a big eater, rarely tells us he's hungry.
 
R

Ratatosk

Administrator
Staff member
DS was/is the same way. We'd be told by the dietician that he should drink so many ounces of formula and he wouldn't even come close; however, we were able to maintain 50th percentile. There were times when we'd bump up the calories in his formula -- had a recipe from the hospital for a greater ratio of powder to water.

If I found something he'd like -- whole milk yogurt, I'd shovel it in. Even if it meant he was eating the same thing every day -- think he once ate spagettios for lunch and supper for several weeks, I'd feed it to him. We do give him whole milk, use cream, butter and olive oil as additions to his regular foods. But he's just not a big eater, rarely tells us he's hungry.
 
R

Ratatosk

Administrator
Staff member
DS was/is the same way. We'd be told by the dietician that he should drink so many ounces of formula and he wouldn't even come close; however, we were able to maintain 50th percentile. There were times when we'd bump up the calories in his formula -- had a recipe from the hospital for a greater ratio of powder to water.

If I found something he'd like -- whole milk yogurt, I'd shovel it in. Even if it meant he was eating the same thing every day -- think he once ate spagettios for lunch and supper for several weeks, I'd feed it to him. We do give him whole milk, use cream, butter and olive oil as additions to his regular foods. But he's just not a big eater, rarely tells us he's hungry.
 
R

Ratatosk

Administrator
Staff member
DS was/is the same way. We'd be told by the dietician that he should drink so many ounces of formula and he wouldn't even come close; however, we were able to maintain 50th percentile. There were times when we'd bump up the calories in his formula -- had a recipe from the hospital for a greater ratio of powder to water.

If I found something he'd like -- whole milk yogurt, I'd shovel it in. Even if it meant he was eating the same thing every day -- think he once ate spagettios for lunch and supper for several weeks, I'd feed it to him. We do give him whole milk, use cream, butter and olive oil as additions to his regular foods. But he's just not a big eater, rarely tells us he's hungry.
 
R

Ratatosk

Administrator
Staff member
DS was/is the same way. We'd be told by the dietician that he should drink so many ounces of formula and he wouldn't even come close; however, we were able to maintain 50th percentile. There were times when we'd bump up the calories in his formula -- had a recipe from the hospital for a greater ratio of powder to water.

If I found something he'd like -- whole milk yogurt, I'd shovel it in. Even if it meant he was eating the same thing every day -- think he once ate spagettios for lunch and supper for several weeks, I'd feed it to him. We do give him whole milk, use cream, butter and olive oil as additions to his regular foods. But he's just not a big eater, rarely tells us he's hungry.
 
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