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How to get your CF Child to gain Weight
- Thread starter 3coolsons
- Start date
I'm so sorry you are going through this with your boys. My daughter just had a tube placed about 6mo ago after struggling with growth and weight gain for years so I know what it takes to reach this point. She is 9- same age your boys were when they first got theirs.
I am trying to understand what happened the first time your boys had the tubes though- I am assuming they had the long PEG tubes placed since you mention they were scheduled to have them replaced with MicKey buttons. This is a common way to do it. However, both of the boys' tubes fell out before they could be replaced...? They just allowed the stoma to close up? That is so strange. I'm sorry you weren't given much opportunity to find out back then if the tube could have been beneficial. I am glad they have a dr now you feel could be more helpful... sounds like they need it.
In our case the first several weeks after the procedure was very difficult (post-op infection, 2nd surgery was needed, a 2 day hospital stay turned into 12, very difficult first few weeks at home getting the feeds and her digestion all going the way it should be...), but the tube has been such a blessing and I can say without a doubt that it has been worth what we went through over the summer. Emily has started growing and gaining more than she has in years. She will remind me to start her feed- she tells me she feels better in the morning after she's had her feed vs. when she does not. We tried everything, EVERYTHING we could, before going the route of the tube- and at this point, I wish we did it sooner.
I am trying to understand what happened the first time your boys had the tubes though- I am assuming they had the long PEG tubes placed since you mention they were scheduled to have them replaced with MicKey buttons. This is a common way to do it. However, both of the boys' tubes fell out before they could be replaced...? They just allowed the stoma to close up? That is so strange. I'm sorry you weren't given much opportunity to find out back then if the tube could have been beneficial. I am glad they have a dr now you feel could be more helpful... sounds like they need it.
In our case the first several weeks after the procedure was very difficult (post-op infection, 2nd surgery was needed, a 2 day hospital stay turned into 12, very difficult first few weeks at home getting the feeds and her digestion all going the way it should be...), but the tube has been such a blessing and I can say without a doubt that it has been worth what we went through over the summer. Emily has started growing and gaining more than she has in years. She will remind me to start her feed- she tells me she feels better in the morning after she's had her feed vs. when she does not. We tried everything, EVERYTHING we could, before going the route of the tube- and at this point, I wish we did it sooner.
I'm so sorry you are going through this with your boys. My daughter just had a tube placed about 6mo ago after struggling with growth and weight gain for years so I know what it takes to reach this point. She is 9- same age your boys were when they first got theirs.
I am trying to understand what happened the first time your boys had the tubes though- I am assuming they had the long PEG tubes placed since you mention they were scheduled to have them replaced with MicKey buttons. This is a common way to do it. However, both of the boys' tubes fell out before they could be replaced...? They just allowed the stoma to close up? That is so strange. I'm sorry you weren't given much opportunity to find out back then if the tube could have been beneficial. I am glad they have a dr now you feel could be more helpful... sounds like they need it.
In our case the first several weeks after the procedure was very difficult (post-op infection, 2nd surgery was needed, a 2 day hospital stay turned into 12, very difficult first few weeks at home getting the feeds and her digestion all going the way it should be...), but the tube has been such a blessing and I can say without a doubt that it has been worth what we went through over the summer. Emily has started growing and gaining more than she has in years. She will remind me to start her feed- she tells me she feels better in the morning after she's had her feed vs. when she does not. We tried everything, EVERYTHING we could, before going the route of the tube- and at this point, I wish we did it sooner.
I am trying to understand what happened the first time your boys had the tubes though- I am assuming they had the long PEG tubes placed since you mention they were scheduled to have them replaced with MicKey buttons. This is a common way to do it. However, both of the boys' tubes fell out before they could be replaced...? They just allowed the stoma to close up? That is so strange. I'm sorry you weren't given much opportunity to find out back then if the tube could have been beneficial. I am glad they have a dr now you feel could be more helpful... sounds like they need it.
In our case the first several weeks after the procedure was very difficult (post-op infection, 2nd surgery was needed, a 2 day hospital stay turned into 12, very difficult first few weeks at home getting the feeds and her digestion all going the way it should be...), but the tube has been such a blessing and I can say without a doubt that it has been worth what we went through over the summer. Emily has started growing and gaining more than she has in years. She will remind me to start her feed- she tells me she feels better in the morning after she's had her feed vs. when she does not. We tried everything, EVERYTHING we could, before going the route of the tube- and at this point, I wish we did it sooner.
I'm so sorry you are going through this with your boys. My daughter just had a tube placed about 6mo ago after struggling with growth and weight gain for years so I know what it takes to reach this point. She is 9- same age your boys were when they first got theirs.
<br />
<br />I am trying to understand what happened the first time your boys had the tubes though- I am assuming they had the long PEG tubes placed since you mention they were scheduled to have them replaced with MicKey buttons. This is a common way to do it. However, both of the boys' tubes fell out before they could be replaced...? They just allowed the stoma to close up? That is so strange. I'm sorry you weren't given much opportunity to find out back then if the tube could have been beneficial. I am glad they have a dr now you feel could be more helpful... sounds like they need it.
<br />
<br />In our case the first several weeks after the procedure was very difficult (post-op infection, 2nd surgery was needed, a 2 day hospital stay turned into 12, very difficult first few weeks at home getting the feeds and her digestion all going the way it should be...), but the tube has been such a blessing and I can say without a doubt that it has been worth what we went through over the summer. Emily has started growing and gaining more than she has in years. She will remind me to start her feed- she tells me she feels better in the morning after she's had her feed vs. when she does not. We tried everything, EVERYTHING we could, before going the route of the tube- and at this point, I wish we did it sooner.
<br />
<br />I am trying to understand what happened the first time your boys had the tubes though- I am assuming they had the long PEG tubes placed since you mention they were scheduled to have them replaced with MicKey buttons. This is a common way to do it. However, both of the boys' tubes fell out before they could be replaced...? They just allowed the stoma to close up? That is so strange. I'm sorry you weren't given much opportunity to find out back then if the tube could have been beneficial. I am glad they have a dr now you feel could be more helpful... sounds like they need it.
<br />
<br />In our case the first several weeks after the procedure was very difficult (post-op infection, 2nd surgery was needed, a 2 day hospital stay turned into 12, very difficult first few weeks at home getting the feeds and her digestion all going the way it should be...), but the tube has been such a blessing and I can say without a doubt that it has been worth what we went through over the summer. Emily has started growing and gaining more than she has in years. She will remind me to start her feed- she tells me she feels better in the morning after she's had her feed vs. when she does not. We tried everything, EVERYTHING we could, before going the route of the tube- and at this point, I wish we did it sooner.
Thanks for your response. When we went back to have the tubes changed to the micki they took our first son back and put him to sleep only to discover that they did not have the button there to replace. So the doctor placed a shorter version and told us he would see us in his office the next week when the button came in and he would be able to change it out in his office. Well the next week came for our appt and when we went once again no button. His nurse explained that it had not come in and he would see us the next week. Well on Friday of that week one of our sons tubes came out and we were told to take him to the emergency room. Well we had so many issues with infection and the depression that the boys went through that when we got to the hospital my husband and I decided not to replace the tube(which now was probablly not the best decision we ever made) but he had only gained a pound so we decided to go back to pushing calories. So that is the story of the our experience.
So this morning we had a long talk with the boys. I took the advice given on letting them voice how they feel and Jordan the one who is really behind in weight said it didnt matter what we did nothing helped but he has given up trying. We tried to explain to him with CF everyday you have to say " I can beat this... I have to eat" but then again he is still a kid.... I think I am at the point to just try the tube again. Thanks for all your support and advice. I always feel better after I have posted here.
So this morning we had a long talk with the boys. I took the advice given on letting them voice how they feel and Jordan the one who is really behind in weight said it didnt matter what we did nothing helped but he has given up trying. We tried to explain to him with CF everyday you have to say " I can beat this... I have to eat" but then again he is still a kid.... I think I am at the point to just try the tube again. Thanks for all your support and advice. I always feel better after I have posted here.
Thanks for your response. When we went back to have the tubes changed to the micki they took our first son back and put him to sleep only to discover that they did not have the button there to replace. So the doctor placed a shorter version and told us he would see us in his office the next week when the button came in and he would be able to change it out in his office. Well the next week came for our appt and when we went once again no button. His nurse explained that it had not come in and he would see us the next week. Well on Friday of that week one of our sons tubes came out and we were told to take him to the emergency room. Well we had so many issues with infection and the depression that the boys went through that when we got to the hospital my husband and I decided not to replace the tube(which now was probablly not the best decision we ever made) but he had only gained a pound so we decided to go back to pushing calories. So that is the story of the our experience.
So this morning we had a long talk with the boys. I took the advice given on letting them voice how they feel and Jordan the one who is really behind in weight said it didnt matter what we did nothing helped but he has given up trying. We tried to explain to him with CF everyday you have to say " I can beat this... I have to eat" but then again he is still a kid.... I think I am at the point to just try the tube again. Thanks for all your support and advice. I always feel better after I have posted here.
So this morning we had a long talk with the boys. I took the advice given on letting them voice how they feel and Jordan the one who is really behind in weight said it didnt matter what we did nothing helped but he has given up trying. We tried to explain to him with CF everyday you have to say " I can beat this... I have to eat" but then again he is still a kid.... I think I am at the point to just try the tube again. Thanks for all your support and advice. I always feel better after I have posted here.
Thanks for your response. When we went back to have the tubes changed to the micki they took our first son back and put him to sleep only to discover that they did not have the button there to replace. So the doctor placed a shorter version and told us he would see us in his office the next week when the button came in and he would be able to change it out in his office. Well the next week came for our appt and when we went once again no button. His nurse explained that it had not come in and he would see us the next week. Well on Friday of that week one of our sons tubes came out and we were told to take him to the emergency room. Well we had so many issues with infection and the depression that the boys went through that when we got to the hospital my husband and I decided not to replace the tube(which now was probablly not the best decision we ever made) but he had only gained a pound so we decided to go back to pushing calories. So that is the story of the our experience.
<br />So this morning we had a long talk with the boys. I took the advice given on letting them voice how they feel and Jordan the one who is really behind in weight said it didnt matter what we did nothing helped but he has given up trying. We tried to explain to him with CF everyday you have to say " I can beat this... I have to eat" but then again he is still a kid.... I think I am at the point to just try the tube again. Thanks for all your support and advice. I always feel better after I have posted here.
<br />So this morning we had a long talk with the boys. I took the advice given on letting them voice how they feel and Jordan the one who is really behind in weight said it didnt matter what we did nothing helped but he has given up trying. We tried to explain to him with CF everyday you have to say " I can beat this... I have to eat" but then again he is still a kid.... I think I am at the point to just try the tube again. Thanks for all your support and advice. I always feel better after I have posted here.
Re. the gain of a pound: I can see how this would have been disappointing. However, it's normal for it to take some time (a matter of months) to start seeing good gains from tube feeding. It takes a while to get up to the rate and number of calories that will allow for gain, and sometimes the supplement has to be changed as well if the first one tried doesn't achieve the desired results. Nighttime feeds can also sometimes impact daytime appetite for a while. It's an adjustment process, and it's essential to not only have a good dr but a good dietitian backing you up. Emily only gained a small amount of weight the first couple months, and then things *really* took off the months after that. <img src="i/expressions/face-icon-small-smile.gif" border="0">
That was inexcusable that things went as far as putting your son under before realizing they didn't have the MicKey kit on hand to replace the peg. <img src="i/expressions/face-icon-small-mad.gif" border="0"> I would have been furious over this kind of incompetence!
I'm so sorry that your son is so discouraged by this and has pretty much just given up. Food had become such a struggle in our household. Fortunately, Emily has always been a great eater, but so much stress was surrounding mealtimes and pressure on what she was going to eat next that I worried over losing that, and worried we were setting her up for long-term unhealthy attitudes about food/eating. I would want to be sure your son understands that the better he eats and the healthier his weight is, the healthier his LUNGS will be... but obviously, making it a high-pressure situation is not going to help. Have you tried supplements like Scandishakes, Carnation, Boost, making high-cal/high-protein smoothies he can drink that might not fill him up as fast as a big plate of food would?
Once Emily started tube feeds they put her on a predigested formula high in MCT fat, which is easily absorbed by people w/CF. It has worked very well for her. They likely went straight to that for her since we'd already tried supps like Carnation, Scandishakes, etc without getting the results we needed. So getting something her body doesn't have to work hard at absorbing has been the right fit for her. Fortunately, insurance covers it.
Wishing you the best as you make this decision. I know it's not easy and once adolescence comes dealing with your child's feelings and cooperation in the matter really compounds it (I have a 13yr old son so can understand that!)
That was inexcusable that things went as far as putting your son under before realizing they didn't have the MicKey kit on hand to replace the peg. <img src="i/expressions/face-icon-small-mad.gif" border="0"> I would have been furious over this kind of incompetence!
I'm so sorry that your son is so discouraged by this and has pretty much just given up. Food had become such a struggle in our household. Fortunately, Emily has always been a great eater, but so much stress was surrounding mealtimes and pressure on what she was going to eat next that I worried over losing that, and worried we were setting her up for long-term unhealthy attitudes about food/eating. I would want to be sure your son understands that the better he eats and the healthier his weight is, the healthier his LUNGS will be... but obviously, making it a high-pressure situation is not going to help. Have you tried supplements like Scandishakes, Carnation, Boost, making high-cal/high-protein smoothies he can drink that might not fill him up as fast as a big plate of food would?
Once Emily started tube feeds they put her on a predigested formula high in MCT fat, which is easily absorbed by people w/CF. It has worked very well for her. They likely went straight to that for her since we'd already tried supps like Carnation, Scandishakes, etc without getting the results we needed. So getting something her body doesn't have to work hard at absorbing has been the right fit for her. Fortunately, insurance covers it.
Wishing you the best as you make this decision. I know it's not easy and once adolescence comes dealing with your child's feelings and cooperation in the matter really compounds it (I have a 13yr old son so can understand that!)
Re. the gain of a pound: I can see how this would have been disappointing. However, it's normal for it to take some time (a matter of months) to start seeing good gains from tube feeding. It takes a while to get up to the rate and number of calories that will allow for gain, and sometimes the supplement has to be changed as well if the first one tried doesn't achieve the desired results. Nighttime feeds can also sometimes impact daytime appetite for a while. It's an adjustment process, and it's essential to not only have a good dr but a good dietitian backing you up. Emily only gained a small amount of weight the first couple months, and then things *really* took off the months after that. <img src="i/expressions/face-icon-small-smile.gif" border="0">
That was inexcusable that things went as far as putting your son under before realizing they didn't have the MicKey kit on hand to replace the peg. <img src="i/expressions/face-icon-small-mad.gif" border="0"> I would have been furious over this kind of incompetence!
I'm so sorry that your son is so discouraged by this and has pretty much just given up. Food had become such a struggle in our household. Fortunately, Emily has always been a great eater, but so much stress was surrounding mealtimes and pressure on what she was going to eat next that I worried over losing that, and worried we were setting her up for long-term unhealthy attitudes about food/eating. I would want to be sure your son understands that the better he eats and the healthier his weight is, the healthier his LUNGS will be... but obviously, making it a high-pressure situation is not going to help. Have you tried supplements like Scandishakes, Carnation, Boost, making high-cal/high-protein smoothies he can drink that might not fill him up as fast as a big plate of food would?
Once Emily started tube feeds they put her on a predigested formula high in MCT fat, which is easily absorbed by people w/CF. It has worked very well for her. They likely went straight to that for her since we'd already tried supps like Carnation, Scandishakes, etc without getting the results we needed. So getting something her body doesn't have to work hard at absorbing has been the right fit for her. Fortunately, insurance covers it.
Wishing you the best as you make this decision. I know it's not easy and once adolescence comes dealing with your child's feelings and cooperation in the matter really compounds it (I have a 13yr old son so can understand that!)
That was inexcusable that things went as far as putting your son under before realizing they didn't have the MicKey kit on hand to replace the peg. <img src="i/expressions/face-icon-small-mad.gif" border="0"> I would have been furious over this kind of incompetence!
I'm so sorry that your son is so discouraged by this and has pretty much just given up. Food had become such a struggle in our household. Fortunately, Emily has always been a great eater, but so much stress was surrounding mealtimes and pressure on what she was going to eat next that I worried over losing that, and worried we were setting her up for long-term unhealthy attitudes about food/eating. I would want to be sure your son understands that the better he eats and the healthier his weight is, the healthier his LUNGS will be... but obviously, making it a high-pressure situation is not going to help. Have you tried supplements like Scandishakes, Carnation, Boost, making high-cal/high-protein smoothies he can drink that might not fill him up as fast as a big plate of food would?
Once Emily started tube feeds they put her on a predigested formula high in MCT fat, which is easily absorbed by people w/CF. It has worked very well for her. They likely went straight to that for her since we'd already tried supps like Carnation, Scandishakes, etc without getting the results we needed. So getting something her body doesn't have to work hard at absorbing has been the right fit for her. Fortunately, insurance covers it.
Wishing you the best as you make this decision. I know it's not easy and once adolescence comes dealing with your child's feelings and cooperation in the matter really compounds it (I have a 13yr old son so can understand that!)
Re. the gain of a pound: I can see how this would have been disappointing. However, it's normal for it to take some time (a matter of months) to start seeing good gains from tube feeding. It takes a while to get up to the rate and number of calories that will allow for gain, and sometimes the supplement has to be changed as well if the first one tried doesn't achieve the desired results. Nighttime feeds can also sometimes impact daytime appetite for a while. It's an adjustment process, and it's essential to not only have a good dr but a good dietitian backing you up. Emily only gained a small amount of weight the first couple months, and then things *really* took off the months after that. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />That was inexcusable that things went as far as putting your son under before realizing they didn't have the MicKey kit on hand to replace the peg. <img src="i/expressions/face-icon-small-mad.gif" border="0"> I would have been furious over this kind of incompetence!
<br />
<br />I'm so sorry that your son is so discouraged by this and has pretty much just given up. Food had become such a struggle in our household. Fortunately, Emily has always been a great eater, but so much stress was surrounding mealtimes and pressure on what she was going to eat next that I worried over losing that, and worried we were setting her up for long-term unhealthy attitudes about food/eating. I would want to be sure your son understands that the better he eats and the healthier his weight is, the healthier his LUNGS will be... but obviously, making it a high-pressure situation is not going to help. Have you tried supplements like Scandishakes, Carnation, Boost, making high-cal/high-protein smoothies he can drink that might not fill him up as fast as a big plate of food would?
<br />
<br />Once Emily started tube feeds they put her on a predigested formula high in MCT fat, which is easily absorbed by people w/CF. It has worked very well for her. They likely went straight to that for her since we'd already tried supps like Carnation, Scandishakes, etc without getting the results we needed. So getting something her body doesn't have to work hard at absorbing has been the right fit for her. Fortunately, insurance covers it.
<br />
<br />Wishing you the best as you make this decision. I know it's not easy and once adolescence comes dealing with your child's feelings and cooperation in the matter really compounds it (I have a 13yr old son so can understand that!)
<br />
<br />That was inexcusable that things went as far as putting your son under before realizing they didn't have the MicKey kit on hand to replace the peg. <img src="i/expressions/face-icon-small-mad.gif" border="0"> I would have been furious over this kind of incompetence!
<br />
<br />I'm so sorry that your son is so discouraged by this and has pretty much just given up. Food had become such a struggle in our household. Fortunately, Emily has always been a great eater, but so much stress was surrounding mealtimes and pressure on what she was going to eat next that I worried over losing that, and worried we were setting her up for long-term unhealthy attitudes about food/eating. I would want to be sure your son understands that the better he eats and the healthier his weight is, the healthier his LUNGS will be... but obviously, making it a high-pressure situation is not going to help. Have you tried supplements like Scandishakes, Carnation, Boost, making high-cal/high-protein smoothies he can drink that might not fill him up as fast as a big plate of food would?
<br />
<br />Once Emily started tube feeds they put her on a predigested formula high in MCT fat, which is easily absorbed by people w/CF. It has worked very well for her. They likely went straight to that for her since we'd already tried supps like Carnation, Scandishakes, etc without getting the results we needed. So getting something her body doesn't have to work hard at absorbing has been the right fit for her. Fortunately, insurance covers it.
<br />
<br />Wishing you the best as you make this decision. I know it's not easy and once adolescence comes dealing with your child's feelings and cooperation in the matter really compounds it (I have a 13yr old son so can understand that!)
momofcfprincess
New member
My DD 11 years old weighed 57 at last clinic visit<img src="i/expressions/face-icon-small-sad.gif" border="0">. she was in the <5percentile. Our doctor has approached us many times about the gbutton, but my daughter being a girl and wearing bathing suits etc. is SSSOOOOOO against one. But we KNOW we have to do something to get her weight up. She is now been drinking 3 VHC (very high calorie 560 calories each) carnation shakes each day along with other meals. We have told her these come first because she needs her weight up. She has been hospitalized 7 times in the last 2 years and her lung function is in the 60s. We go back to clinic next week and I hope she has gained. I really think she has<img src="i/expressions/face-icon-small-smile.gif" border="0">. The VHC shakes are the only thing that helps her gain weight she just cannot eat enough high calorie food to gain much weight!!
momofcfprincess
New member
My DD 11 years old weighed 57 at last clinic visit<img src="i/expressions/face-icon-small-sad.gif" border="0">. she was in the <5percentile. Our doctor has approached us many times about the gbutton, but my daughter being a girl and wearing bathing suits etc. is SSSOOOOOO against one. But we KNOW we have to do something to get her weight up. She is now been drinking 3 VHC (very high calorie 560 calories each) carnation shakes each day along with other meals. We have told her these come first because she needs her weight up. She has been hospitalized 7 times in the last 2 years and her lung function is in the 60s. We go back to clinic next week and I hope she has gained. I really think she has<img src="i/expressions/face-icon-small-smile.gif" border="0">. The VHC shakes are the only thing that helps her gain weight she just cannot eat enough high calorie food to gain much weight!!
momofcfprincess
New member
My DD 11 years old weighed 57 at last clinic visit<img src="i/expressions/face-icon-small-sad.gif" border="0">. she was in the <5percentile. Our doctor has approached us many times about the gbutton, but my daughter being a girl and wearing bathing suits etc. is SSSOOOOOO against one. But we KNOW we have to do something to get her weight up. She is now been drinking 3 VHC (very high calorie 560 calories each) carnation shakes each day along with other meals. We have told her these come first because she needs her weight up. She has been hospitalized 7 times in the last 2 years and her lung function is in the 60s. We go back to clinic next week and I hope she has gained. I really think she has<img src="i/expressions/face-icon-small-smile.gif" border="0">. The VHC shakes are the only thing that helps her gain weight she just cannot eat enough high calorie food to gain much weight!!
Emily was doing the Carnation, Scandishakes, etc and it was just not enough. Esp with the puberty growth spurt just a few years away... we knew we had to do something.
Even having just one- occasionally two- supplements a day was dramatically cutting into her food intake, rather than ADDING to her food/calorie consumption. And it's not healthy for the supps to replace real food, nor does it foster healthy attitudes about eating. She loves real food- fruits and vegetables, healthy stuff, variety in her diet. I did not want to lose that in the quest to put weight on her. It simply was not worth it. With the tube, she can get the extra calories while she sleeps and eat normally while she's awake. And since weight loss is such a problem while she's sick, we add bolus feeds during the day during times of illness, which has reduced weight loss during exacerbations.
Even having just one- occasionally two- supplements a day was dramatically cutting into her food intake, rather than ADDING to her food/calorie consumption. And it's not healthy for the supps to replace real food, nor does it foster healthy attitudes about eating. She loves real food- fruits and vegetables, healthy stuff, variety in her diet. I did not want to lose that in the quest to put weight on her. It simply was not worth it. With the tube, she can get the extra calories while she sleeps and eat normally while she's awake. And since weight loss is such a problem while she's sick, we add bolus feeds during the day during times of illness, which has reduced weight loss during exacerbations.
Emily was doing the Carnation, Scandishakes, etc and it was just not enough. Esp with the puberty growth spurt just a few years away... we knew we had to do something.
Even having just one- occasionally two- supplements a day was dramatically cutting into her food intake, rather than ADDING to her food/calorie consumption. And it's not healthy for the supps to replace real food, nor does it foster healthy attitudes about eating. She loves real food- fruits and vegetables, healthy stuff, variety in her diet. I did not want to lose that in the quest to put weight on her. It simply was not worth it. With the tube, she can get the extra calories while she sleeps and eat normally while she's awake. And since weight loss is such a problem while she's sick, we add bolus feeds during the day during times of illness, which has reduced weight loss during exacerbations.
Even having just one- occasionally two- supplements a day was dramatically cutting into her food intake, rather than ADDING to her food/calorie consumption. And it's not healthy for the supps to replace real food, nor does it foster healthy attitudes about eating. She loves real food- fruits and vegetables, healthy stuff, variety in her diet. I did not want to lose that in the quest to put weight on her. It simply was not worth it. With the tube, she can get the extra calories while she sleeps and eat normally while she's awake. And since weight loss is such a problem while she's sick, we add bolus feeds during the day during times of illness, which has reduced weight loss during exacerbations.
Emily was doing the Carnation, Scandishakes, etc and it was just not enough. Esp with the puberty growth spurt just a few years away... we knew we had to do something.
<br />
<br />Even having just one- occasionally two- supplements a day was dramatically cutting into her food intake, rather than ADDING to her food/calorie consumption. And it's not healthy for the supps to replace real food, nor does it foster healthy attitudes about eating. She loves real food- fruits and vegetables, healthy stuff, variety in her diet. I did not want to lose that in the quest to put weight on her. It simply was not worth it. With the tube, she can get the extra calories while she sleeps and eat normally while she's awake. And since weight loss is such a problem while she's sick, we add bolus feeds during the day during times of illness, which has reduced weight loss during exacerbations.
<br />
<br />Even having just one- occasionally two- supplements a day was dramatically cutting into her food intake, rather than ADDING to her food/calorie consumption. And it's not healthy for the supps to replace real food, nor does it foster healthy attitudes about eating. She loves real food- fruits and vegetables, healthy stuff, variety in her diet. I did not want to lose that in the quest to put weight on her. It simply was not worth it. With the tube, she can get the extra calories while she sleeps and eat normally while she's awake. And since weight loss is such a problem while she's sick, we add bolus feeds during the day during times of illness, which has reduced weight loss during exacerbations.
Thank you for the information. We have had the same experience with the supplements. My daughter typically is a very healthy eater too: fruits, veges, lean protein. All at her choice. I am ready to bite the bullet and try the nasal tube feed and see how it goes. Thanks for your support.