Bella's-mom
New member
So we finally had the talk today about putting a g-tube in my 10 month old. She's just not gaining any weight and won't eat. It would be for over night feeds. Any advice?
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g tube advice
- Thread starter Bella's-mom
- Start date
A
Allansarmy
Guest
My son got his at the age of 10 (should have got it much sooner). If he got it much sooner, in my heart I think it could have helped him with his nutrition, weight gain etc. He had a body of a 6 year old. My son gained 25 pounds and few a few inches in just 4 months. The dietitian was so excited that she decided to laminate his growth chart and ask us if she could show other parents the results with his name blacked out of course. My son is 16 now and he really wants it out. He hates it and has made a deal with the doctor. We stopped the feedings and if he continues to gain on his own and shows good progress then when he turns 17 he will consider pulling it.
V
VAmom
Guest
I would strongly recommend the g-tube. I wish my son's doctor had recommended it when he was younger. Instead, it took going to a new CF clinic before it happened and by then, he was in 6th grade and in the 1 percentile for height and weight. His weight doubled in less than a year. However, by his senior year, he was insistent that it be removed, with promises of eating and continuing to gain weight (two years later, his weight is the same).
Your daughter will benefit so much from the nutrition and the growth. Perhaps she will be able to grow and maintain weight on her own by her teens -- when not having a g-tube will be very important to her.
Your daughter will benefit so much from the nutrition and the growth. Perhaps she will be able to grow and maintain weight on her own by her teens -- when not having a g-tube will be very important to her.
I had my G-tube put in when i was 16, im now 22. It was a hard decision for me to get it put in, but im so very glad I did! It has saved my life more times than i can count. I had considered getting it taken out because i hadnt used it in over a year, but thankfully I didnt go through with it because months later I got really sick and lost all the weight i had put on and was down to 89lbs. After lots of hard work I reached my goal weight and passed it, currently i am 130lbs!
hope this helps
hope this helps
G-Tube Advantage
G-Tube Advantage
“Let food be your medicine and Medicine be your food” Hippocrates
For many years I looked at having to rely on a G-tube, to gain weight, as a negative thing. It seemed like a failure on my part for not gaining weight, laziness or just being overwhelmed with just having to deal with a chronic illness . The prevailing concept in managing CF is to eat high carb, high sugar, high gluten, high dairy and high fats, basically throw enough crap at the wall and something is bound to stick. This might be good for calories and works for some, but for the enlightened, health minded minority this is not the case. If you do not have the understanding of how health
and nutrition are so simply woven together you are missing the most basic component of health and that in the future, advanced medicine
will be nutritional medicine.
Now obviously CF is so complicated and difficult to deal with we need to take care of ourselves holistically and traditionally, we need both
sides to dovetail together the best traditional medicine and the best nutrition if we are going to have a chance at surviving and beating this
CF.( None of this information should construed as medical advice and any changes to your medical routine should be done with the
acknowledgement of your health care provider. ) Supplements and other forms of nutrition have good and bad effects and you have to be careful
not to overdo too much change at once. Like with anything too much of anything can have negative effects. Slow and steady wins the race.
It seems that there are several new drugs coming out that could really help us, I am hopeful and anxious, but guarded with my anticipation. So now more than ever I want to stay as well as possible. Bring on the G-tube and nutritional advantage.
When I first had a G-tube placed and did tube feedings at night, within 2 years I gained almost 25 pounds. Well worth the hassle and placement.
I was amazed that I gained weight but then stopped using it over the years. I got tired of having it and had it removed. I later got sick, lost a lot of weight and needed more calories so the G-tube was replaced. I used it to gain weight but still struggled with using it and the concept of using it, I had now developed diabetes and many food allergies. So finding a formula was difficult and also when I did the tube feedings it seemed to spike my blood sugars and I would feel blah most of the time afterwards. Well those formulas, while serve a need and are necessary for some to gain weight the evolution of the g-tube continues. I found I had more success with my own home made formula that was based on whole foods and balanced nutrition. It has made a big difference. Now no system is perfect it is just better than what I was doing before. You will have to adjust and customize a formula and routine to your needs. Trial and error.
The greatest thing with a G-tube blending system is you can eat anything, anything that you can stick in a blender. And thus the story begins:
G-Tube Advantage
“Let food be your medicine and Medicine be your food” Hippocrates
For many years I looked at having to rely on a G-tube, to gain weight, as a negative thing. It seemed like a failure on my part for not gaining weight, laziness or just being overwhelmed with just having to deal with a chronic illness . The prevailing concept in managing CF is to eat high carb, high sugar, high gluten, high dairy and high fats, basically throw enough crap at the wall and something is bound to stick. This might be good for calories and works for some, but for the enlightened, health minded minority this is not the case. If you do not have the understanding of how health
and nutrition are so simply woven together you are missing the most basic component of health and that in the future, advanced medicine
will be nutritional medicine.
Now obviously CF is so complicated and difficult to deal with we need to take care of ourselves holistically and traditionally, we need both
sides to dovetail together the best traditional medicine and the best nutrition if we are going to have a chance at surviving and beating this
CF.( None of this information should construed as medical advice and any changes to your medical routine should be done with the
acknowledgement of your health care provider. ) Supplements and other forms of nutrition have good and bad effects and you have to be careful
not to overdo too much change at once. Like with anything too much of anything can have negative effects. Slow and steady wins the race.
It seems that there are several new drugs coming out that could really help us, I am hopeful and anxious, but guarded with my anticipation. So now more than ever I want to stay as well as possible. Bring on the G-tube and nutritional advantage.
When I first had a G-tube placed and did tube feedings at night, within 2 years I gained almost 25 pounds. Well worth the hassle and placement.
I was amazed that I gained weight but then stopped using it over the years. I got tired of having it and had it removed. I later got sick, lost a lot of weight and needed more calories so the G-tube was replaced. I used it to gain weight but still struggled with using it and the concept of using it, I had now developed diabetes and many food allergies. So finding a formula was difficult and also when I did the tube feedings it seemed to spike my blood sugars and I would feel blah most of the time afterwards. Well those formulas, while serve a need and are necessary for some to gain weight the evolution of the g-tube continues. I found I had more success with my own home made formula that was based on whole foods and balanced nutrition. It has made a big difference. Now no system is perfect it is just better than what I was doing before. You will have to adjust and customize a formula and routine to your needs. Trial and error.
The greatest thing with a G-tube blending system is you can eat anything, anything that you can stick in a blender. And thus the story begins:
JennyCoulon
New member
My oldest son just turned 13 and has had a g-button since he was 5 yrs. old. I pushed it off as long as I could but unfortunetly not being able to gain weight is part of this disease. He is on Carnation Instant Breakfast VHC which is now Boost and he gets 5 cartons per night about 6 nights a week. Each carton has 530? calories so he is getting the majority of his daily needed calories at night. He is very active in soccer and basketball so we need to keep the weight on him as much as we can when he is burning calories. Our middle child is 7 yrs. old and just got his placed this past July. We tried very hard with him also but it is just something that you can't do anything about. Both of my boys are very active in sports and they don't let it bother them for the most part. My oldest son is on an antihistimian that is used as an appetite stimuliant and from July to September he gained over 8 lbs. and that is with him playing soccer. It is something that is a good thing to do if it is needed. It stops you as parents from harping at your child to eat, eat, eat and try to push high calories food or drinks at them. There is some down time but for the most part it is worth it. Good luck and let us know if you have any questions.
S
shazie81
Guest
My husband and myself waited and waited to get our oldest the gtube. And after we made that very hard decision all I can say now is, it truly was the best decision we could have made.
nhaggard07
New member
For allansarmy----
I know exactly what your teenager is going through. It is extremely embarrassing and makes you very self conscious to have a visible tube sticking out of you. It makes me not want to go to water parks or do social things as such with your peers. If I was you I would honestly take it out for him. It's his decision and even though his weight may dip, his mental state of mind will be much better and give him confidence back. Remember he can get it replaced easily, and when he turns 20-24 he will gladly get it put back in as social events like that would have changed in his life by then and also by that time he will have matured and will know how to handle the fact that he has cf better. He will be mature enough to handle the fact that he has cf and needs his tube and will be confident to explain to his peers what his tube is and why he needs it. Trust me, I am exactly where your teenager was at that age and absolutely relate to him. Give him what he wants and his life will be better And before you know it he will make his own decision to replace the tube and he will actually be comfortable having it I promise you!!
I know exactly what your teenager is going through. It is extremely embarrassing and makes you very self conscious to have a visible tube sticking out of you. It makes me not want to go to water parks or do social things as such with your peers. If I was you I would honestly take it out for him. It's his decision and even though his weight may dip, his mental state of mind will be much better and give him confidence back. Remember he can get it replaced easily, and when he turns 20-24 he will gladly get it put back in as social events like that would have changed in his life by then and also by that time he will have matured and will know how to handle the fact that he has cf better. He will be mature enough to handle the fact that he has cf and needs his tube and will be confident to explain to his peers what his tube is and why he needs it. Trust me, I am exactly where your teenager was at that age and absolutely relate to him. Give him what he wants and his life will be better And before you know it he will make his own decision to replace the tube and he will actually be comfortable having it I promise you!!