hi my son luke is two years old and was diagnosed eight months ago.This ismy first time i have plucked up the courage to use this site.Luke had a gastrostomy placed in may as he only weighed twenty ponds he as managed to gain nearlt three pounds since then and two weeks ago had a larger tube fitted.Its not been the easiest of times but were hoping it will make a differance.this site has certainly given me help and its lovly to know were not alone.thank you to you all
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
CF, Weight Gain and Feeding Tubes
- Thread starter anonymous
- Start date
hi my son luke is two years old and was diagnosed eight months ago.This ismy first time i have plucked up the courage to use this site.Luke had a gastrostomy placed in may as he only weighed twenty ponds he as managed to gain nearlt three pounds since then and two weeks ago had a larger tube fitted.Its not been the easiest of times but were hoping it will make a differance.this site has certainly given me help and its lovly to know were not alone.thank you to you all
Thanks to everyone that posted about the tube. I guess we will make the decision in six weeks based off of any weight gain. I am not really looking for any. I am just wandering after reading the replies if maybe it's what they do need. May be they would not be as sick as often either. I am not sure what was mean't about the reddness around the sight. This may sound dumb but what actually leaks? Is is the liquid that is administered into the tube or stomach acid? The boys have both had picc lines and I was assuming it would be somewhat similiar to that. A strict schedule was also mentioned. Do you do supplements after regular meals or do you only do feedings through the tube? Would they be able to do something like this at school? Does this prevent you from doing things that you like to do? Our boys are very active. Is that something to be concerned with? The doctor acted like they would be able to do anything they wanted but I still have my own concerns about that. Sometimes it's easy for the doctor to say it's no big deal but it's not going on in their home. It's really easy to give advice when it's not you or your children that is affects. I know that we will do what we have to when it comes to keeping the boys healthy but, I just don't want to do something that will not make any difference. Althought is sounds like the tube has made some big differences for some of you. That does give me hope. It is so much easier to ask opinions from someone that has actually been there. Thanks for all the adivce.
momtocftwins
momtocftwins
Thanks to everyone that posted about the tube. I guess we will make the decision in six weeks based off of any weight gain. I am not really looking for any. I am just wandering after reading the replies if maybe it's what they do need. May be they would not be as sick as often either. I am not sure what was mean't about the reddness around the sight. This may sound dumb but what actually leaks? Is is the liquid that is administered into the tube or stomach acid? The boys have both had picc lines and I was assuming it would be somewhat similiar to that. A strict schedule was also mentioned. Do you do supplements after regular meals or do you only do feedings through the tube? Would they be able to do something like this at school? Does this prevent you from doing things that you like to do? Our boys are very active. Is that something to be concerned with? The doctor acted like they would be able to do anything they wanted but I still have my own concerns about that. Sometimes it's easy for the doctor to say it's no big deal but it's not going on in their home. It's really easy to give advice when it's not you or your children that is affects. I know that we will do what we have to when it comes to keeping the boys healthy but, I just don't want to do something that will not make any difference. Althought is sounds like the tube has made some big differences for some of you. That does give me hope. It is so much easier to ask opinions from someone that has actually been there. Thanks for all the adivce.
momtocftwins
momtocftwins
Hello Momtocftwins:
The reddness around the site in my case is actually caused by stomach acid. Being a 21 year old girl I'm often concerned with my image and like my feeding tube to be non-noticeable. There fore I had to opt for the PEG tube. This particular tube does not have the best suction on the inside of the stomach and causes stomach acid to leak out when I eat, however it is the smallest tube that I have found out there. So I'm stubborn and basically refuse to get another tube put in. So I have traded a little reddness for the ease of hiding the feeding tube. Not that the feeding tube is anything to hide or be ashamed of, but lets be honest it just doesn't go with my cute, tight shirts <img src="i/expressions/face-icon-small-smile.gif" border="0">. Also when I say a strict schedule, it was strict for me becuase I was strict with myself. I would only let myself skip the feeding tube one night out of seven. So this was hard for me because i liked to sleep out or stay out late with friends and hated to start the feeding tube very very late at night. It was difficult at first for me to balance a normal and very full social life with the tube. I eat all day regular food, and do the feedings at night. I do four cans of supplement over the time that I sleep and go on with my normal day as usual. So I do eat regular food: breakfast, lunch, dinner and snacks. The feeding tube has not held me back from anything that I wanted to do ever! I was very good at balancing when I needed to not skip the feeding tube and when I could. When I was way up on weight I was a little bit easier on myself. If I saw myself losing some weight I would be a little bit more strict again. Believe me when I first got the feeding tube it was so foreign and I NEVER thought that it would become a part of my daily routine. But it does! After a while you just get used to it! Hope this helps!
The reddness around the site in my case is actually caused by stomach acid. Being a 21 year old girl I'm often concerned with my image and like my feeding tube to be non-noticeable. There fore I had to opt for the PEG tube. This particular tube does not have the best suction on the inside of the stomach and causes stomach acid to leak out when I eat, however it is the smallest tube that I have found out there. So I'm stubborn and basically refuse to get another tube put in. So I have traded a little reddness for the ease of hiding the feeding tube. Not that the feeding tube is anything to hide or be ashamed of, but lets be honest it just doesn't go with my cute, tight shirts <img src="i/expressions/face-icon-small-smile.gif" border="0">. Also when I say a strict schedule, it was strict for me becuase I was strict with myself. I would only let myself skip the feeding tube one night out of seven. So this was hard for me because i liked to sleep out or stay out late with friends and hated to start the feeding tube very very late at night. It was difficult at first for me to balance a normal and very full social life with the tube. I eat all day regular food, and do the feedings at night. I do four cans of supplement over the time that I sleep and go on with my normal day as usual. So I do eat regular food: breakfast, lunch, dinner and snacks. The feeding tube has not held me back from anything that I wanted to do ever! I was very good at balancing when I needed to not skip the feeding tube and when I could. When I was way up on weight I was a little bit easier on myself. If I saw myself losing some weight I would be a little bit more strict again. Believe me when I first got the feeding tube it was so foreign and I NEVER thought that it would become a part of my daily routine. But it does! After a while you just get used to it! Hope this helps!
Hello Momtocftwins:
The reddness around the site in my case is actually caused by stomach acid. Being a 21 year old girl I'm often concerned with my image and like my feeding tube to be non-noticeable. There fore I had to opt for the PEG tube. This particular tube does not have the best suction on the inside of the stomach and causes stomach acid to leak out when I eat, however it is the smallest tube that I have found out there. So I'm stubborn and basically refuse to get another tube put in. So I have traded a little reddness for the ease of hiding the feeding tube. Not that the feeding tube is anything to hide or be ashamed of, but lets be honest it just doesn't go with my cute, tight shirts <img src="i/expressions/face-icon-small-smile.gif" border="0">. Also when I say a strict schedule, it was strict for me becuase I was strict with myself. I would only let myself skip the feeding tube one night out of seven. So this was hard for me because i liked to sleep out or stay out late with friends and hated to start the feeding tube very very late at night. It was difficult at first for me to balance a normal and very full social life with the tube. I eat all day regular food, and do the feedings at night. I do four cans of supplement over the time that I sleep and go on with my normal day as usual. So I do eat regular food: breakfast, lunch, dinner and snacks. The feeding tube has not held me back from anything that I wanted to do ever! I was very good at balancing when I needed to not skip the feeding tube and when I could. When I was way up on weight I was a little bit easier on myself. If I saw myself losing some weight I would be a little bit more strict again. Believe me when I first got the feeding tube it was so foreign and I NEVER thought that it would become a part of my daily routine. But it does! After a while you just get used to it! Hope this helps!
The reddness around the site in my case is actually caused by stomach acid. Being a 21 year old girl I'm often concerned with my image and like my feeding tube to be non-noticeable. There fore I had to opt for the PEG tube. This particular tube does not have the best suction on the inside of the stomach and causes stomach acid to leak out when I eat, however it is the smallest tube that I have found out there. So I'm stubborn and basically refuse to get another tube put in. So I have traded a little reddness for the ease of hiding the feeding tube. Not that the feeding tube is anything to hide or be ashamed of, but lets be honest it just doesn't go with my cute, tight shirts <img src="i/expressions/face-icon-small-smile.gif" border="0">. Also when I say a strict schedule, it was strict for me becuase I was strict with myself. I would only let myself skip the feeding tube one night out of seven. So this was hard for me because i liked to sleep out or stay out late with friends and hated to start the feeding tube very very late at night. It was difficult at first for me to balance a normal and very full social life with the tube. I eat all day regular food, and do the feedings at night. I do four cans of supplement over the time that I sleep and go on with my normal day as usual. So I do eat regular food: breakfast, lunch, dinner and snacks. The feeding tube has not held me back from anything that I wanted to do ever! I was very good at balancing when I needed to not skip the feeding tube and when I could. When I was way up on weight I was a little bit easier on myself. If I saw myself losing some weight I would be a little bit more strict again. Believe me when I first got the feeding tube it was so foreign and I NEVER thought that it would become a part of my daily routine. But it does! After a while you just get used to it! Hope this helps!
Hello Margaret,
Thank you so much for all the info. I can understand the image for a 21 year old. That must be tough. It sounds like you really have it together. Good for you. I don't like to see any one let this disease contol their lives. I guess like anything else with cf it is always foreign at first then it just becomes a part of life. I will let you know our outcome.
Thanks!!!
Momtocftwins
Thank you so much for all the info. I can understand the image for a 21 year old. That must be tough. It sounds like you really have it together. Good for you. I don't like to see any one let this disease contol their lives. I guess like anything else with cf it is always foreign at first then it just becomes a part of life. I will let you know our outcome.
Thanks!!!
Momtocftwins
Hello Margaret,
Thank you so much for all the info. I can understand the image for a 21 year old. That must be tough. It sounds like you really have it together. Good for you. I don't like to see any one let this disease contol their lives. I guess like anything else with cf it is always foreign at first then it just becomes a part of life. I will let you know our outcome.
Thanks!!!
Momtocftwins
Thank you so much for all the info. I can understand the image for a 21 year old. That must be tough. It sounds like you really have it together. Good for you. I don't like to see any one let this disease contol their lives. I guess like anything else with cf it is always foreign at first then it just becomes a part of life. I will let you know our outcome.
Thanks!!!
Momtocftwins