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sue8468
07-23-2009, 08:10 PM
I see so many people opposed to G tubes and just let me tell you, from experience, that it is the best decision we ever made. My son was 10 years old and weighed 40 pounds. We resisted the tube also, like many of you are, thinking "we will just add more butter to his food" "give him whole milk and half and half", "we can do this on our own, we dont need a g-tube". Let me tell you, you cant.

When he was 10, he is now 16, we gave in and got the tube. It was very upsetting, I felt like a failure. Within a few months, he began to gain weight, his lung function improved and his quality of life got better. There were no more struggles at meal time..if he ate, he ate, if he didnt, we just gave him a little extra tube feed. Eating became a pleasureable experience for him. We no longer had to nag and beg for "just one more bite".

He has had troubles with his weight still, we just got done with acourse of IV antibiotics and since then he has gained 5 pounds in 2 weeks. He still gets nightly feeds.

Weight is definitely correclated to lung function. When we have trouble breathing, we burn more calories...CF kids (and adults) need a little extra cushion to fall back on when the times get tough! With the malabsorption, nutrition, not just weight is important..with a tube feed, the formulas provide 100% complete nutrition, which in turn makes the body heal better and lung function improve.

Oh! The best part of the g-tube...giving icky medicines...anything tough to swallow got shot through the g-tube..lol.

He has always been short for his age, probably because of the mal-nutrition. Weight gain is important for height growth. The taller you are, the bigger your lungs are and the better off a CF person will be. He is on growth hormone and it is working beautifully. His height would not be there if his nutritional staus was down.

In closing...if your child is in the lower percentiles, just bite the bullet and get the tube. The benefits outweigh the risks, and the sooner the nutritional status is met, the better. Dont let the opportunity for growth pass by...and once the damage is done, it is done.

Remember, its about NUTRITION as much as WEIGHT.

Susan

sue8468
07-23-2009, 08:10 PM
I see so many people opposed to G tubes and just let me tell you, from experience, that it is the best decision we ever made. My son was 10 years old and weighed 40 pounds. We resisted the tube also, like many of you are, thinking "we will just add more butter to his food" "give him whole milk and half and half", "we can do this on our own, we dont need a g-tube". Let me tell you, you cant.

When he was 10, he is now 16, we gave in and got the tube. It was very upsetting, I felt like a failure. Within a few months, he began to gain weight, his lung function improved and his quality of life got better. There were no more struggles at meal time..if he ate, he ate, if he didnt, we just gave him a little extra tube feed. Eating became a pleasureable experience for him. We no longer had to nag and beg for "just one more bite".

He has had troubles with his weight still, we just got done with acourse of IV antibiotics and since then he has gained 5 pounds in 2 weeks. He still gets nightly feeds.

Weight is definitely correclated to lung function. When we have trouble breathing, we burn more calories...CF kids (and adults) need a little extra cushion to fall back on when the times get tough! With the malabsorption, nutrition, not just weight is important..with a tube feed, the formulas provide 100% complete nutrition, which in turn makes the body heal better and lung function improve.

Oh! The best part of the g-tube...giving icky medicines...anything tough to swallow got shot through the g-tube..lol.

He has always been short for his age, probably because of the mal-nutrition. Weight gain is important for height growth. The taller you are, the bigger your lungs are and the better off a CF person will be. He is on growth hormone and it is working beautifully. His height would not be there if his nutritional staus was down.

In closing...if your child is in the lower percentiles, just bite the bullet and get the tube. The benefits outweigh the risks, and the sooner the nutritional status is met, the better. Dont let the opportunity for growth pass by...and once the damage is done, it is done.

Remember, its about NUTRITION as much as WEIGHT.

Susan

sue8468
07-23-2009, 08:10 PM
I see so many people opposed to G tubes and just let me tell you, from experience, that it is the best decision we ever made. My son was 10 years old and weighed 40 pounds. We resisted the tube also, like many of you are, thinking "we will just add more butter to his food" "give him whole milk and half and half", "we can do this on our own, we dont need a g-tube". Let me tell you, you cant.

When he was 10, he is now 16, we gave in and got the tube. It was very upsetting, I felt like a failure. Within a few months, he began to gain weight, his lung function improved and his quality of life got better. There were no more struggles at meal time..if he ate, he ate, if he didnt, we just gave him a little extra tube feed. Eating became a pleasureable experience for him. We no longer had to nag and beg for "just one more bite".

He has had troubles with his weight still, we just got done with acourse of IV antibiotics and since then he has gained 5 pounds in 2 weeks. He still gets nightly feeds.

Weight is definitely correclated to lung function. When we have trouble breathing, we burn more calories...CF kids (and adults) need a little extra cushion to fall back on when the times get tough! With the malabsorption, nutrition, not just weight is important..with a tube feed, the formulas provide 100% complete nutrition, which in turn makes the body heal better and lung function improve.

Oh! The best part of the g-tube...giving icky medicines...anything tough to swallow got shot through the g-tube..lol.

He has always been short for his age, probably because of the mal-nutrition. Weight gain is important for height growth. The taller you are, the bigger your lungs are and the better off a CF person will be. He is on growth hormone and it is working beautifully. His height would not be there if his nutritional staus was down.

In closing...if your child is in the lower percentiles, just bite the bullet and get the tube. The benefits outweigh the risks, and the sooner the nutritional status is met, the better. Dont let the opportunity for growth pass by...and once the damage is done, it is done.

Remember, its about NUTRITION as much as WEIGHT.

Susan

sue8468
07-23-2009, 08:10 PM
I see so many people opposed to G tubes and just let me tell you, from experience, that it is the best decision we ever made. My son was 10 years old and weighed 40 pounds. We resisted the tube also, like many of you are, thinking "we will just add more butter to his food" "give him whole milk and half and half", "we can do this on our own, we dont need a g-tube". Let me tell you, you cant.

When he was 10, he is now 16, we gave in and got the tube. It was very upsetting, I felt like a failure. Within a few months, he began to gain weight, his lung function improved and his quality of life got better. There were no more struggles at meal time..if he ate, he ate, if he didnt, we just gave him a little extra tube feed. Eating became a pleasureable experience for him. We no longer had to nag and beg for "just one more bite".

He has had troubles with his weight still, we just got done with acourse of IV antibiotics and since then he has gained 5 pounds in 2 weeks. He still gets nightly feeds.

Weight is definitely correclated to lung function. When we have trouble breathing, we burn more calories...CF kids (and adults) need a little extra cushion to fall back on when the times get tough! With the malabsorption, nutrition, not just weight is important..with a tube feed, the formulas provide 100% complete nutrition, which in turn makes the body heal better and lung function improve.

Oh! The best part of the g-tube...giving icky medicines...anything tough to swallow got shot through the g-tube..lol.

He has always been short for his age, probably because of the mal-nutrition. Weight gain is important for height growth. The taller you are, the bigger your lungs are and the better off a CF person will be. He is on growth hormone and it is working beautifully. His height would not be there if his nutritional staus was down.

In closing...if your child is in the lower percentiles, just bite the bullet and get the tube. The benefits outweigh the risks, and the sooner the nutritional status is met, the better. Dont let the opportunity for growth pass by...and once the damage is done, it is done.

Remember, its about NUTRITION as much as WEIGHT.

Susan

sue8468
07-23-2009, 08:10 PM
I see so many people opposed to G tubes and just let me tell you, from experience, that it is the best decision we ever made. My son was 10 years old and weighed 40 pounds. We resisted the tube also, like many of you are, thinking "we will just add more butter to his food" "give him whole milk and half and half", "we can do this on our own, we dont need a g-tube". Let me tell you, you cant.
<br />
<br />When he was 10, he is now 16, we gave in and got the tube. It was very upsetting, I felt like a failure. Within a few months, he began to gain weight, his lung function improved and his quality of life got better. There were no more struggles at meal time..if he ate, he ate, if he didnt, we just gave him a little extra tube feed. Eating became a pleasureable experience for him. We no longer had to nag and beg for "just one more bite".
<br />
<br />He has had troubles with his weight still, we just got done with acourse of IV antibiotics and since then he has gained 5 pounds in 2 weeks. He still gets nightly feeds.
<br />
<br />Weight is definitely correclated to lung function. When we have trouble breathing, we burn more calories...CF kids (and adults) need a little extra cushion to fall back on when the times get tough! With the malabsorption, nutrition, not just weight is important..with a tube feed, the formulas provide 100% complete nutrition, which in turn makes the body heal better and lung function improve.
<br />
<br />Oh! The best part of the g-tube...giving icky medicines...anything tough to swallow got shot through the g-tube..lol.
<br />
<br /> He has always been short for his age, probably because of the mal-nutrition. Weight gain is important for height growth. The taller you are, the bigger your lungs are and the better off a CF person will be. He is on growth hormone and it is working beautifully. His height would not be there if his nutritional staus was down.
<br />
<br />In closing...if your child is in the lower percentiles, just bite the bullet and get the tube. The benefits outweigh the risks, and the sooner the nutritional status is met, the better. Dont let the opportunity for growth pass by...and once the damage is done, it is done.
<br />
<br />Remember, its about NUTRITION as much as WEIGHT.
<br />
<br />Susan

mariahsmommy
07-24-2009, 01:46 PM
I have to agree with Susan. My daughter Mariah is eight months old now and weighs 17 lbs 5 oz. She has flourished with the g-tube and I just couldn't be more thankful for it. I just wish they made different colored ones. I was very resistant to the thought of it when she was in the NICU, but they stressed the importance of nutrtion and how it correlates ot lung fuunction. Mariah has yet to have a respiratory infection(knock on wood) and rarely coughs. She may be too young to tell, but there's really know way to know because she has had the tube since she was five weeks old. Because of Mariah's surgeries, she was unable to eat for about three weeks of her life which totally wrecked havoc. She doesn't really care to eat and I don't have to worry every single time I feed her because I can just put it through her tube. I used to not like people to see it because I didn't want them thinking differently about my baby but now I am like who cares.

mariahsmommy
07-24-2009, 01:46 PM
I have to agree with Susan. My daughter Mariah is eight months old now and weighs 17 lbs 5 oz. She has flourished with the g-tube and I just couldn't be more thankful for it. I just wish they made different colored ones. I was very resistant to the thought of it when she was in the NICU, but they stressed the importance of nutrtion and how it correlates ot lung fuunction. Mariah has yet to have a respiratory infection(knock on wood) and rarely coughs. She may be too young to tell, but there's really know way to know because she has had the tube since she was five weeks old. Because of Mariah's surgeries, she was unable to eat for about three weeks of her life which totally wrecked havoc. She doesn't really care to eat and I don't have to worry every single time I feed her because I can just put it through her tube. I used to not like people to see it because I didn't want them thinking differently about my baby but now I am like who cares.

mariahsmommy
07-24-2009, 01:46 PM
I have to agree with Susan. My daughter Mariah is eight months old now and weighs 17 lbs 5 oz. She has flourished with the g-tube and I just couldn't be more thankful for it. I just wish they made different colored ones. I was very resistant to the thought of it when she was in the NICU, but they stressed the importance of nutrtion and how it correlates ot lung fuunction. Mariah has yet to have a respiratory infection(knock on wood) and rarely coughs. She may be too young to tell, but there's really know way to know because she has had the tube since she was five weeks old. Because of Mariah's surgeries, she was unable to eat for about three weeks of her life which totally wrecked havoc. She doesn't really care to eat and I don't have to worry every single time I feed her because I can just put it through her tube. I used to not like people to see it because I didn't want them thinking differently about my baby but now I am like who cares.

mariahsmommy
07-24-2009, 01:46 PM
I have to agree with Susan. My daughter Mariah is eight months old now and weighs 17 lbs 5 oz. She has flourished with the g-tube and I just couldn't be more thankful for it. I just wish they made different colored ones. I was very resistant to the thought of it when she was in the NICU, but they stressed the importance of nutrtion and how it correlates ot lung fuunction. Mariah has yet to have a respiratory infection(knock on wood) and rarely coughs. She may be too young to tell, but there's really know way to know because she has had the tube since she was five weeks old. Because of Mariah's surgeries, she was unable to eat for about three weeks of her life which totally wrecked havoc. She doesn't really care to eat and I don't have to worry every single time I feed her because I can just put it through her tube. I used to not like people to see it because I didn't want them thinking differently about my baby but now I am like who cares.

mariahsmommy
07-24-2009, 01:46 PM
I have to agree with Susan. My daughter Mariah is eight months old now and weighs 17 lbs 5 oz. She has flourished with the g-tube and I just couldn't be more thankful for it. I just wish they made different colored ones. I was very resistant to the thought of it when she was in the NICU, but they stressed the importance of nutrtion and how it correlates ot lung fuunction. Mariah has yet to have a respiratory infection(knock on wood) and rarely coughs. She may be too young to tell, but there's really know way to know because she has had the tube since she was five weeks old. Because of Mariah's surgeries, she was unable to eat for about three weeks of her life which totally wrecked havoc. She doesn't really care to eat and I don't have to worry every single time I feed her because I can just put it through her tube. I used to not like people to see it because I didn't want them thinking differently about my baby but now I am like who cares.

mbrandazzo
07-24-2009, 02:03 PM
I completely agree with the two previous posts... My 18 month old son actually just had his g-tube placed this past Wednesday and it was WAY better than I thought it was going to be. He already seems to be "back to normal." THe feedings also are pretty easy to handle, we just hook him up, push a few buttons, and are good to go. It is SUCH a stress relief to know he is getting the nutrition he needs without us having to force him to eat and drink... I know it is going to help him, and make him grow to be as healthy as possible. Good luck to anyone who is having to struggle with a decision such as this, and know you are not alone.

mbrandazzo
07-24-2009, 02:03 PM
I completely agree with the two previous posts... My 18 month old son actually just had his g-tube placed this past Wednesday and it was WAY better than I thought it was going to be. He already seems to be "back to normal." THe feedings also are pretty easy to handle, we just hook him up, push a few buttons, and are good to go. It is SUCH a stress relief to know he is getting the nutrition he needs without us having to force him to eat and drink... I know it is going to help him, and make him grow to be as healthy as possible. Good luck to anyone who is having to struggle with a decision such as this, and know you are not alone.

mbrandazzo
07-24-2009, 02:03 PM
I completely agree with the two previous posts... My 18 month old son actually just had his g-tube placed this past Wednesday and it was WAY better than I thought it was going to be. He already seems to be "back to normal." THe feedings also are pretty easy to handle, we just hook him up, push a few buttons, and are good to go. It is SUCH a stress relief to know he is getting the nutrition he needs without us having to force him to eat and drink... I know it is going to help him, and make him grow to be as healthy as possible. Good luck to anyone who is having to struggle with a decision such as this, and know you are not alone.

mbrandazzo
07-24-2009, 02:03 PM
I completely agree with the two previous posts... My 18 month old son actually just had his g-tube placed this past Wednesday and it was WAY better than I thought it was going to be. He already seems to be "back to normal." THe feedings also are pretty easy to handle, we just hook him up, push a few buttons, and are good to go. It is SUCH a stress relief to know he is getting the nutrition he needs without us having to force him to eat and drink... I know it is going to help him, and make him grow to be as healthy as possible. Good luck to anyone who is having to struggle with a decision such as this, and know you are not alone.

mbrandazzo
07-24-2009, 02:03 PM
I completely agree with the two previous posts... My 18 month old son actually just had his g-tube placed this past Wednesday and it was WAY better than I thought it was going to be. He already seems to be "back to normal." THe feedings also are pretty easy to handle, we just hook him up, push a few buttons, and are good to go. It is SUCH a stress relief to know he is getting the nutrition he needs without us having to force him to eat and drink... I know it is going to help him, and make him grow to be as healthy as possible. Good luck to anyone who is having to struggle with a decision such as this, and know you are not alone.