To G Tube or not?

K

kybert

New member
***** why are doctors so eager to cut kids open and disfigure them! my god! most kids are skinny, very skinny. fact of life! wait till they go through puberty and if they still need one then they can decide for themselves.

what the? the name of the 'son of god' gets blanked out. ROFL!
 
J

Jane

Digital opinion leader
Its a personal decision, one only you and your family can make. As a parent of two kids with G-tubes, I'd recommend it. G-tubes worked for us! It is easier (emotionally and physically) to do this when children are younger.

When reading the replies from all those who comment of this subject, opinions are so divided. Many of those who are against this surgery are not parents. SO much has come out recently about the health advantages of having higher BMI. With this new data, comes the push for weight gain via G-tubes. It is alarming to some how it is now an encouraged proceedure for CF kids with low BMI, but in my opinion, parents need to do <b><i>whatever</i></b> it takes to give their kid a fighting chance against this nasty disease.

I am convinced my son would have died last year if it was not for the g-tube keeping him fed. It was his only source of calories. It allowed him to keep his weight on while fighting the bacteria and then gain significant weight after the recovery.

Its not an easy thing to decide. Please PM me if you have any questions!
 
J

Jane

Digital opinion leader
Its a personal decision, one only you and your family can make. As a parent of two kids with G-tubes, I'd recommend it. G-tubes worked for us! It is easier (emotionally and physically) to do this when children are younger.

When reading the replies from all those who comment of this subject, opinions are so divided. Many of those who are against this surgery are not parents. SO much has come out recently about the health advantages of having higher BMI. With this new data, comes the push for weight gain via G-tubes. It is alarming to some how it is now an encouraged proceedure for CF kids with low BMI, but in my opinion, parents need to do <b><i>whatever</i></b> it takes to give their kid a fighting chance against this nasty disease.

I am convinced my son would have died last year if it was not for the g-tube keeping him fed. It was his only source of calories. It allowed him to keep his weight on while fighting the bacteria and then gain significant weight after the recovery.

Its not an easy thing to decide. Please PM me if you have any questions!
 
J

Jane

Digital opinion leader
Its a personal decision, one only you and your family can make. As a parent of two kids with G-tubes, I'd recommend it. G-tubes worked for us! It is easier (emotionally and physically) to do this when children are younger.

When reading the replies from all those who comment of this subject, opinions are so divided. Many of those who are against this surgery are not parents. SO much has come out recently about the health advantages of having higher BMI. With this new data, comes the push for weight gain via G-tubes. It is alarming to some how it is now an encouraged proceedure for CF kids with low BMI, but in my opinion, parents need to do <b><i>whatever</i></b> it takes to give their kid a fighting chance against this nasty disease.

I am convinced my son would have died last year if it was not for the g-tube keeping him fed. It was his only source of calories. It allowed him to keep his weight on while fighting the bacteria and then gain significant weight after the recovery.

Its not an easy thing to decide. Please PM me if you have any questions!
 
Y

yellowsmom

New member
My daughter was diagnoses at 5months, and had a G-tube placed a few days later,3 years later it was the best thing I could have done. She is a on and off again eater and refuses to drink her milk. With the tube I don't have to worry about her eating enough to keep her weight up. She had severe malabsorption and even with the G-tube it is hard to keep her consistanly gaining weight. I can't imagine where we would be if I didn't have the G-tube.
 
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yellowsmom

New member
My daughter was diagnoses at 5months, and had a G-tube placed a few days later,3 years later it was the best thing I could have done. She is a on and off again eater and refuses to drink her milk. With the tube I don't have to worry about her eating enough to keep her weight up. She had severe malabsorption and even with the G-tube it is hard to keep her consistanly gaining weight. I can't imagine where we would be if I didn't have the G-tube.
 
Y

yellowsmom

New member
My daughter was diagnoses at 5months, and had a G-tube placed a few days later,3 years later it was the best thing I could have done. She is a on and off again eater and refuses to drink her milk. With the tube I don't have to worry about her eating enough to keep her weight up. She had severe malabsorption and even with the G-tube it is hard to keep her consistanly gaining weight. I can't imagine where we would be if I didn't have the G-tube.
 
D

DannysMom

New member
My son had G tube put in 3 years ago and then changed to a G/J tube 2 years ago..Best thing we ever did..He is gaining weight and giving meds are a breeze now..You just squirt them in.. He gets night feedings and boluses during the day.. It is alot less stress on me trying to get him to eat knowing that he has this extra nutrition.. He is able to function like a normal 8 year old.. He goes to school and plays baseball.. I wish we did it when he was first born because I really think it would of helped in his overall health.. Good luck with your decision.
 
D

DannysMom

New member
My son had G tube put in 3 years ago and then changed to a G/J tube 2 years ago..Best thing we ever did..He is gaining weight and giving meds are a breeze now..You just squirt them in.. He gets night feedings and boluses during the day.. It is alot less stress on me trying to get him to eat knowing that he has this extra nutrition.. He is able to function like a normal 8 year old.. He goes to school and plays baseball.. I wish we did it when he was first born because I really think it would of helped in his overall health.. Good luck with your decision.
 
D

DannysMom

New member
My son had G tube put in 3 years ago and then changed to a G/J tube 2 years ago..Best thing we ever did..He is gaining weight and giving meds are a breeze now..You just squirt them in.. He gets night feedings and boluses during the day.. It is alot less stress on me trying to get him to eat knowing that he has this extra nutrition.. He is able to function like a normal 8 year old.. He goes to school and plays baseball.. I wish we did it when he was first born because I really think it would of helped in his overall health.. Good luck with your decision.
 
K

karon72

New member
It is a very hard decision to make & one that should not be made lightly. As we all know, this disease affects every patient differently. I am all for trying alternate forms of weight gain & we did. The g-tube proved the best for Erin. She gained so much weight & looks better than we could ever imagined. She is filled out in places and it is a blessing to watch grow & not be labeled so tiny. She loves her mickey button & is proud to show it off.

And to one comment...she is not disfigured. She has a tiny hold in her abdomen that has been the one treatment so far in her cf battle that has made the biggest difference in her daily life & our lives as parents. For some reason that comment struck a nerve and I wanted to address it.

As for Erin, she just has 3-5 night feedings a week now & she eats normally throughout the day. When she is sick, I can give her a bolus feeding, but haven't had to do that yet...she is healthier since her weight it up & starting pulmozyme. Her appetite has increased since the tube & she now will eat a whole meal at one sitting.

And to Jody, thanks for your very informative response about the different types of alternative choices. That type of comment, we all learn from! I will also find the thread where I learned to post the photo and pm it to you.
 
K

karon72

New member
It is a very hard decision to make & one that should not be made lightly. As we all know, this disease affects every patient differently. I am all for trying alternate forms of weight gain & we did. The g-tube proved the best for Erin. She gained so much weight & looks better than we could ever imagined. She is filled out in places and it is a blessing to watch grow & not be labeled so tiny. She loves her mickey button & is proud to show it off.

And to one comment...she is not disfigured. She has a tiny hold in her abdomen that has been the one treatment so far in her cf battle that has made the biggest difference in her daily life & our lives as parents. For some reason that comment struck a nerve and I wanted to address it.

As for Erin, she just has 3-5 night feedings a week now & she eats normally throughout the day. When she is sick, I can give her a bolus feeding, but haven't had to do that yet...she is healthier since her weight it up & starting pulmozyme. Her appetite has increased since the tube & she now will eat a whole meal at one sitting.

And to Jody, thanks for your very informative response about the different types of alternative choices. That type of comment, we all learn from! I will also find the thread where I learned to post the photo and pm it to you.
 
K

karon72

New member
It is a very hard decision to make & one that should not be made lightly. As we all know, this disease affects every patient differently. I am all for trying alternate forms of weight gain & we did. The g-tube proved the best for Erin. She gained so much weight & looks better than we could ever imagined. She is filled out in places and it is a blessing to watch grow & not be labeled so tiny. She loves her mickey button & is proud to show it off.

And to one comment...she is not disfigured. She has a tiny hold in her abdomen that has been the one treatment so far in her cf battle that has made the biggest difference in her daily life & our lives as parents. For some reason that comment struck a nerve and I wanted to address it.

As for Erin, she just has 3-5 night feedings a week now & she eats normally throughout the day. When she is sick, I can give her a bolus feeding, but haven't had to do that yet...she is healthier since her weight it up & starting pulmozyme. Her appetite has increased since the tube & she now will eat a whole meal at one sitting.

And to Jody, thanks for your very informative response about the different types of alternative choices. That type of comment, we all learn from! I will also find the thread where I learned to post the photo and pm it to you.
 
D

dasjsmum

New member
My son is on glutathione (GSH), it has done wonders for his weight, six kilos in three months. We get it from theranaturals, here is a link for a forum where it is discussed:




<a target=_blank class=ftalternatingbarlinklarge href="http://members5.boardhost.com/CFGSH/index.html
">http://members5.boardhost.com/CFGSH/index.html
</a>


Why not give it a try before doing anything more drastic? Here's a story's page from the same forum (you can see how people have gotten on over a few years).


<a target=_blank class=ftalternatingbarlinklarge href="http://members5.boardhost.com/CFGSHStories/
">http://members5.boardhost.com/CFGSHStories/
</a>

There is also multiple posts on the adult's board about GSH and NAC (which works to prompt the body to produce GSH).



Just read aobve post mentions probiotics...this has also done wonders for Sam.
 
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