I am the parent of a 20-month old boy w/ CF who is not gaining weight well. We have been discussing tube feeding options with his team and we are leaning toward the G-tube. In trying to do some ersearch, I came across several fairly negative posts on this site and am just wondering if that's a "vocal" minority. Could anyone please tell me of positive experiences w/ G-tubes? Also, is there anything in particular we should know about before embarking on this step?
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G-Tube- Any Good Stories??
- Thread starter CJG
- Start date
Hi- I was initially very against a g-tube for my daughter. However, she had fallen to the 6% on the growth chart. (She was over 100% at birth!) She also rarely had an appetite. So, finally we had the procedure done. It was awkward the first 6 weeks prior to the Mic Key Button because she had the long tube attached. She also took awhile to adjust to this tube coming out of her stomach.
It has been six months now and she just sees it as her "button". It has been a godsend when she is sick and would normally not eat at all. It is also great for those meds that taste terrible. She is finally not considered "at risk" nutritionally and she seems stronger and happier. Good Luck!
Maria (mother of three daughters, the youngest Samantha w/cf)
It has been six months now and she just sees it as her "button". It has been a godsend when she is sick and would normally not eat at all. It is also great for those meds that taste terrible. She is finally not considered "at risk" nutritionally and she seems stronger and happier. Good Luck!
Maria (mother of three daughters, the youngest Samantha w/cf)
Initially I fought it for my then almost 5 year old son. I thought I'll just get him to eat more. He never had an appetite. We gave in and his health really improved. He went three years after that with out a tune up. He is now almost 13 it has been almost 8 years and I've never been sorry. It's just become another part of our lives and takes the pressure off him. He still tries to eat wht he can. Another plus... all those yucky tasting medicines that you have to fight for him to take....you can put most through his g-tube. I can even give hime meds when he's asleep.
Ask me if you have any questions
Terri Mom of three 2 with CF
Ask me if you have any questions
Terri Mom of three 2 with CF
My son got the Gtube last February.. I wish we had gotten it sooner...It is great for when he is having a bad eating day...And a godsend for those yucky antibiotics.... He is now at the average weight for his height...He calls it his other belly button. I wasn't sure in the beginning, but glad we did it.. Good luck in what you decide.
Hi my name is Jennie- I have two teen boys 16 and 14. They just got their tube put in in august and september. I think that thye are great. "I don't have a tube, I think that they are great." They have them and being teens when they got them was not a great thing for there selfconfidence. But my older son who was 90 lbs for ever is finally over 100lbs. he likes that. Still is not crazy about the tube. We just got the mikey button wow it make life a lot easier for them both boys have the button much better than the tube hanging out like 12 inches. My 16 yr old is a choosey eater. now we can do the formula at night an f=d he doesn't have to drink it. They do it all by them self i just check and make sure they do.
Are there many cons to having the tube put in? What does the procedure usually entail? An overnight hospital stay? We are literally at our wits end with our son's eating behavior. His weight is falling and eating is a constant battle. I am completely exhausted from it. I'd honestly rather do anything else during the day - - than deal with eating wars. We have taken every approach: the "ignore bad behavior but reinforce the good," ignore everything and completely let him eat on his own, promise him rewards if he eats, etc. It's honestly gotten to the point that I have to remind my son to CHEW! My husband is completely against it, but I'm becoming more and more interested in the g-tube as our problems only increase. Thanks for any suggestions, Carey
This is shamrock again. I initially had an ng tube ( a tube in my nose) when I was 2 to when I was 5. My mum would put it down every night and take it out in the morning so I could go to playschool and things. I would be fed over night and my weight went all the way up!
Then I had the g-tube put in when I was 5. I have grown up with it just like I have grown up with cf. I know no different. It is just so handy to have it and if it gives me no problem sleeping or anything.
When I am sick and whats left of my appetite goes, we simply put extra feed in at night to maintain my weight. I think it is a great idea!
Any questions, post them or you can email me ilovepugwall@yahoo.com <img src="i/expressions/rose.gif" border="0">
Then I had the g-tube put in when I was 5. I have grown up with it just like I have grown up with cf. I know no different. It is just so handy to have it and if it gives me no problem sleeping or anything.
When I am sick and whats left of my appetite goes, we simply put extra feed in at night to maintain my weight. I think it is a great idea!
Any questions, post them or you can email me ilovepugwall@yahoo.com <img src="i/expressions/rose.gif" border="0">
Shamrock, thanks for your insight. Do you mind me asking what exactly you put in your g tube? I mean, do you take enzymes and then a supplement or do you take a supplement that doesn't need enzymes? I've heard these formulas are very expensive and we're paying out the MAX for pulmozyme and TOBI already (50%!!!). Also, if my son had a g tube, would it be noticable any other time besides him being in his swim trunks?
Thanks,
Carey
Thanks,
Carey
Well when I was younger I didn't need to take enzymes because the feed was pre-digested fat or something like that. Then a few years ago I switched feeds to one that had to be digested so now I take enzymes. I could have feeds mixed up, like which one was pre-digested fat, but now I take enzymes with it. I used to take 4 but now I take 6. I take them all at the start of the feed.
Mine I dont think is noticable. No one has ever noticed it because it's under my clothes and even if I was wearing somthing really tight (like my leotard for gymnastics) it just looked like a fold in the clothes.
Also you can tailor the feeds to meet your needs. I take a litre each night. If I needed to get up really early one morning then I would set the feed to a faster speed, like 250ml p/h so it would only take 4 hours, so when I get up it would be finished in time and yet I wouldn't feel bloated. You will find that you will adjust it to your son's own needs.
I personally think, even though I don't know your son, that its better to knock this weight loss on the head early on. I feel had I started feeds when I was like ten I would have found it very hard to adjust. Maybe you could try ng feeding first. Although sometimes young children find the sensation of the tube going down quite scary.
I take nurtrison energy feeds although since your son is 20months old he probably wouldn't on these ones. I see young kids on the ward taking "kangaroo" feeds. Also I don't think he would take a litre. I am very active and older so I need more energy.
Feel free to ask if you've anymore questions!
<img src="i/expressions/face-icon-small-happy.gif" border="0"> <img src="i/expressions/rose.gif" border="0">
Mine I dont think is noticable. No one has ever noticed it because it's under my clothes and even if I was wearing somthing really tight (like my leotard for gymnastics) it just looked like a fold in the clothes.
Also you can tailor the feeds to meet your needs. I take a litre each night. If I needed to get up really early one morning then I would set the feed to a faster speed, like 250ml p/h so it would only take 4 hours, so when I get up it would be finished in time and yet I wouldn't feel bloated. You will find that you will adjust it to your son's own needs.
I personally think, even though I don't know your son, that its better to knock this weight loss on the head early on. I feel had I started feeds when I was like ten I would have found it very hard to adjust. Maybe you could try ng feeding first. Although sometimes young children find the sensation of the tube going down quite scary.
I take nurtrison energy feeds although since your son is 20months old he probably wouldn't on these ones. I see young kids on the ward taking "kangaroo" feeds. Also I don't think he would take a litre. I am very active and older so I need more energy.
Feel free to ask if you've anymore questions!
<img src="i/expressions/face-icon-small-happy.gif" border="0"> <img src="i/expressions/rose.gif" border="0">
Hi Carey,
I noticed your high co-pay for Pulmazyme and Tobi. Have you applied to the Tobi Foundation and Genentech Endowment fund? They will pay for all or at least part of your co-pay. It depends on your income level. We're at a pretty high level and still qualified for some partial payment.
Also, about the g-tube: Samantha was in for an overnight stay. She seemed sore for the first week, but adjusted quite quickly. She does night feeds with Nutren 1.5 and takes enzymes at the beginning of the feed. She takes about 13 oz. a night.
She still has issues with weight gain, but it is a comfort to know that the tube is there to maintain her nutrition.
Maria (mother of three daughters, the youngest, Samantha w/cf)
I noticed your high co-pay for Pulmazyme and Tobi. Have you applied to the Tobi Foundation and Genentech Endowment fund? They will pay for all or at least part of your co-pay. It depends on your income level. We're at a pretty high level and still qualified for some partial payment.
Also, about the g-tube: Samantha was in for an overnight stay. She seemed sore for the first week, but adjusted quite quickly. She does night feeds with Nutren 1.5 and takes enzymes at the beginning of the feed. She takes about 13 oz. a night.
She still has issues with weight gain, but it is a comfort to know that the tube is there to maintain her nutrition.
Maria (mother of three daughters, the youngest, Samantha w/cf)
We have had the eating battles with my daughter as well. Have you seen a behavioral psychologist at the children's hospital who works with eating disorders? They had some good advice for us. They would watch me feed my daughter and then they would give me new techniques after the meal was over. Also, there is one book that I really thought did a good job addressing feeding children. It is called "Child of Mine: Feeding With Love and Good Sense" by Ellyn Satter. We also put my daughter on cyproheptadine. It is a decongestant and the side effect is hunger. It has helped my daughter.
My daughter was also on a feeding tube when she was four months old. She was on the NG tube for three months before we found out she was refusing to eat due to a milk allergy. It was a life saver for us during those months.
My daughter is now three and a half. It is just during the past four or five months that she has turned the corner in respect to her eating habits. She now eats what I ask her to!! I still have to feed her most of her food that she doesn't enjoy, but we have made a lot of progress. Not sure what the change is, but she is now at an age where we can discuss the importance of eating and she seems to understand. She has gained the weight she has needed to finally, so there is no more discussion of a feeding tube.
Maybe you could just look into night feeding, so he will still eat during the day. From what you describe it could be a power thing going on with your son (probably cf related too). They tend to know how desperate we are to get food down them and they want to be the ones in charge. From what I have learned from my daughter is that they always will win the food battle and the less I stress and concern myself with their food intake the better they do (hard to do sometimes). I also have a 17 month old with cf. I left the feeding up to him starting gradually at 8 months and now he won't let me put a bite in his mouth. I am very happy about that. It is all up to him and he is doing great with his weight. I think the Prevacid my children take also helps.
Sharon, mom of Sophia, 3 and Jack, 17 months both with cf
My daughter was also on a feeding tube when she was four months old. She was on the NG tube for three months before we found out she was refusing to eat due to a milk allergy. It was a life saver for us during those months.
My daughter is now three and a half. It is just during the past four or five months that she has turned the corner in respect to her eating habits. She now eats what I ask her to!! I still have to feed her most of her food that she doesn't enjoy, but we have made a lot of progress. Not sure what the change is, but she is now at an age where we can discuss the importance of eating and she seems to understand. She has gained the weight she has needed to finally, so there is no more discussion of a feeding tube.
Maybe you could just look into night feeding, so he will still eat during the day. From what you describe it could be a power thing going on with your son (probably cf related too). They tend to know how desperate we are to get food down them and they want to be the ones in charge. From what I have learned from my daughter is that they always will win the food battle and the less I stress and concern myself with their food intake the better they do (hard to do sometimes). I also have a 17 month old with cf. I left the feeding up to him starting gradually at 8 months and now he won't let me put a bite in his mouth. I am very happy about that. It is all up to him and he is doing great with his weight. I think the Prevacid my children take also helps.
Sharon, mom of Sophia, 3 and Jack, 17 months both with cf