Hi I'm new to the forum. I have a son 12 yr w/cf. He has been pretty healthy. Last year or so he's been dropping off his weight curve and he's not going to be as tall as he should. Height around 47 % weight around 41%. Clinic says they don't approach parents about g tubes until the 20's. I just wonder if he had it earlier if it would help him acheive normal growth and help with puberty. I just read an article that said the longer you wait the less it will do for you in growth terms. I am worried about how invasive a procedure and complications. Does any one have experience with this or information? Thanks
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What about G tubes?
- Thread starter anonymous
- Start date
I
IG
Guest
12?
That seems plenty of time for growth. I know most of the guys I went to school with didn't even look like they were starting puberty until they were 14-15 (sometimes even as late as 18).
I had a gtube and quite honestly I wish I'd gotten it earlier.
Altogether I gained about 20 lbs. using it really when I needed it, I feel that if I'd kept the weight on earlier I might not have gone downhill so fast with my health, but hindsight is 20/20 and my health was already very bad at the time.
The surgery itself is invasive I won't say it isn't, but it's more beneficial (to my thoughts) and worth it, but afterwards with just the gtube itself it seems minimally invasive.
Complications? I think I had an infection around the site after surgery, the wound was lanced and kept clean and dry and no problems were occured after that.
I won't say I liked it, because I certainly didn't (hated it really).
It was annoying, irritating, and something that had to be consistently done.
But it was good for me.
I'm sure you'll get a lot of other answers though.
That seems plenty of time for growth. I know most of the guys I went to school with didn't even look like they were starting puberty until they were 14-15 (sometimes even as late as 18).
I had a gtube and quite honestly I wish I'd gotten it earlier.
Altogether I gained about 20 lbs. using it really when I needed it, I feel that if I'd kept the weight on earlier I might not have gone downhill so fast with my health, but hindsight is 20/20 and my health was already very bad at the time.
The surgery itself is invasive I won't say it isn't, but it's more beneficial (to my thoughts) and worth it, but afterwards with just the gtube itself it seems minimally invasive.
Complications? I think I had an infection around the site after surgery, the wound was lanced and kept clean and dry and no problems were occured after that.
I won't say I liked it, because I certainly didn't (hated it really).
It was annoying, irritating, and something that had to be consistently done.
But it was good for me.
I'm sure you'll get a lot of other answers though.
Hi I have a question so far my son have been very healthy as well the doctors were talking about giving him a g tube too but his weight mysteriously increased but I want to know do everyone with (cf) have to have a g tube sometime in their life.<img src="i/expressions/face-icon-small-confused.gif" border="0">
T
mother of four
T
mother of four
I would personally suggest giving him a chance to maintain and then try to gain the weight back before putting in the tube. That is just my opinion though. When I was younger everytime g-tube came up I got motivated and gained weight. Help him count calories, it really helps writing it done, it helps with the motivation. Also, have everyone in the family do this, so everyone is trying to hit their targeted calorie intake. Don't just make it about him, everyone in the family needs to keep track of their diet in different ways. I say do it as a family. Same thing with exercise, keep track and do it as a family. If this does not work then a g-tube is a good option, but I would give it a good try to gain weight without it. In my situation, once I hit my 20s, I was much more able to maintain and even gain weight with aid of weight gainer suppliements.
Both my boys have g-tubes and it has really been a good thing. Originally it was a tough and emotional decision. Yes, it is surgery for them and more work for you BUT it gives you piece of mind about calorie intake.
Since Josh was sick in the spring he's been on antibiotics that make him nauseous and lose his appetite. The tube is the only was he is getting ANY calories right now. Its been a gift really. Jesse has been eating great and gaining on his own so we cut back on his g-tube feedings. We know its there when we need it.
Since Josh was sick in the spring he's been on antibiotics that make him nauseous and lose his appetite. The tube is the only was he is getting ANY calories right now. Its been a gift really. Jesse has been eating great and gaining on his own so we cut back on his g-tube feedings. We know its there when we need it.
I just wanted to say the g-tube has saved my sons life. He was below 0% and now just hit almost 50%. It took us 4 1/2 years and we have now cut back on night time feeds to only 3 days a week. He just started kindergarten and since his weight is up he fights infections better. This year he has only been in the hospital twice and he has had over 20 hospital stays. Needless to say it has been a blessing. I was so scared at first but these were the gi docs words. IF you do not consider the g tube your son will not make it. I said do it. He was around 17 months when we got it. He was diagnosed at a year and my daughter was almost 5 and she was diagnosed a few days after him. He tells me he loves his button.
Jeanine Mom to sydney 9 w/cf, Trey 5 w/cf and Abbey 2 w/out cf
Jeanine Mom to sydney 9 w/cf, Trey 5 w/cf and Abbey 2 w/out cf
I would give him a chance and tell him how important it is to eat and increase his caloric intake. Add some mini meals to his day. Perhaps if he gets up in the middle of the night tell him to take a high caloric drink, tell him to snack then exercise. This might encourage his appetite to increase.
I never had a g-tube and frankly when the doctor suggested it, I gained the weight i needed to. If his doctors thinks it is necessary well then you have your answer.
I never had a g-tube and frankly when the doctor suggested it, I gained the weight i needed to. If his doctors thinks it is necessary well then you have your answer.
thelizardqueen
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Risa</b></i>
I would give him a chance and tell him how important it is to eat and increase his caloric intake.</end quote></div>
I would agree with Risa. I am so anti-feeding tubes. Try adding a few small meals throughout the day, or try a supplement shake like Scandishake or Boost.
I would give him a chance and tell him how important it is to eat and increase his caloric intake.</end quote></div>
I would agree with Risa. I am so anti-feeding tubes. Try adding a few small meals throughout the day, or try a supplement shake like Scandishake or Boost.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Risa</b></i>
I would give him a chance and tell him how important it is to eat and increase his caloric intake..</end quote></div>
If this familiy is anything like ours, eating/not eating becomes a big issue. These kids have heard JUST EAT SOMETHING since they were babies. My son was in a study group when he was five that was supposed to change behavior and increase calories. He's heard his whole life that eating=growth=health=life. Its not a new concept. Telling a 12 year old anything doesn't mean he'll do it.
I would give him a chance and tell him how important it is to eat and increase his caloric intake..</end quote></div>
If this familiy is anything like ours, eating/not eating becomes a big issue. These kids have heard JUST EAT SOMETHING since they were babies. My son was in a study group when he was five that was supposed to change behavior and increase calories. He's heard his whole life that eating=growth=health=life. Its not a new concept. Telling a 12 year old anything doesn't mean he'll do it.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jane</b></i>
Telling a 12 year old anything doesn't mean he'll do it.</end quote></div>
This is true for some but not all, maybe he will now see the need better and will do it to avoid surgury. Just give him a shot to try to gain on his own. It is my opinion that some doctors really do push the g-tube too soon as they are treating the patient not the person. Also, maybe have your twelve year old log on here to read or chat with some others with cf. I think hearing things from someone with cf is much more effective then those who don't have cf.
Telling a 12 year old anything doesn't mean he'll do it.</end quote></div>
This is true for some but not all, maybe he will now see the need better and will do it to avoid surgury. Just give him a shot to try to gain on his own. It is my opinion that some doctors really do push the g-tube too soon as they are treating the patient not the person. Also, maybe have your twelve year old log on here to read or chat with some others with cf. I think hearing things from someone with cf is much more effective then those who don't have cf.
thefrogprincess
New member
The thing is, the sooner you get the gtube the less growth he'll lose. My brother gained weight and grew like nothing else when he had his gtube. It was amazing how much better he looked and felt. If you really feel that this is the right thing then you should push for it.
F
fr3ak
Guest
The light I shine on the G-tube debate is not a nice one<br>
<br>
I was pressured into getting my tube to aid me while I waited on my
tx<br>
<br>
I had done NG feeds prior to getting my G-tube and because I
coughed so much NG feeding was impractical as I coughed/spewed my
tube up more times then I could be bothered to re sink it.<br>
<br>
So the decision was made to go with the tube<br>
<br>
which was my first mistake<br>
<br>
my tube was honestly nothing but a royal pain in my gut<br>
<br>
I was plagued with continuous chronic pain from day one of its
insertion<br>
<br>
it leaked<br>
<br>
it made the skin around the area complete raw (stomach acid burning
the skin)<br>
<br>
<br>
it smelled really bad<br>
<br>
and in the end I had it taken out barely 6 months after it was
placed due to the fact I was losing more weight (which contradicted
what it was intended for)<br>
<br>
It didn't last till after my tx, it was taken out I think 2 months
prior to getting my lungs<br>
<br>
<br>
I believe my G-tube was one of the worse decisions I ever made and
wished I had of kept refusing to have it put in<br>
<br>
and to top it off you are finally left with an extra belly
button<br>
<br>
before getting a tube inserted try absolutely everything you can
and use it as a last resort...<br>
<br>
Try NG (nasal gastric) feeds first, or drinking ensure,
shandishakes or what ever it takes...<br>
<br>
if its a matter of life or death then definitely get one...but if
you can avoid them then I would...<br>
<br>
just my take on G-tubes...<br>
<br>
<br>
I was pressured into getting my tube to aid me while I waited on my
tx<br>
<br>
I had done NG feeds prior to getting my G-tube and because I
coughed so much NG feeding was impractical as I coughed/spewed my
tube up more times then I could be bothered to re sink it.<br>
<br>
So the decision was made to go with the tube<br>
<br>
which was my first mistake<br>
<br>
my tube was honestly nothing but a royal pain in my gut<br>
<br>
I was plagued with continuous chronic pain from day one of its
insertion<br>
<br>
it leaked<br>
<br>
it made the skin around the area complete raw (stomach acid burning
the skin)<br>
<br>
<br>
it smelled really bad<br>
<br>
and in the end I had it taken out barely 6 months after it was
placed due to the fact I was losing more weight (which contradicted
what it was intended for)<br>
<br>
It didn't last till after my tx, it was taken out I think 2 months
prior to getting my lungs<br>
<br>
<br>
I believe my G-tube was one of the worse decisions I ever made and
wished I had of kept refusing to have it put in<br>
<br>
and to top it off you are finally left with an extra belly
button<br>
<br>
before getting a tube inserted try absolutely everything you can
and use it as a last resort...<br>
<br>
Try NG (nasal gastric) feeds first, or drinking ensure,
shandishakes or what ever it takes...<br>
<br>
if its a matter of life or death then definitely get one...but if
you can avoid them then I would...<br>
<br>
just my take on G-tubes...<br>
<br>
Thanks everyone for you're input. I still don't know if I should be conservative and use it as a last resort or be aggressive and hit it from all sides. He hardly eats breakfast. Who knows if he eats lunch or takes his enzymes at school. He does eat supper usually. Part of me says stay on top of it, but it sounds like a major ordeal. Can someone fill me in on the details of how it works after the surgery. Thanks again
My boys have a bard "button". There is also a MIC-KEY button. The bard has a small flap of plastic with a snap-type closure. It is very flat and flexible. The MIC-KEY type looks more like a button and is a little higher. Both have extension tubing that hooks into the hole and to the feeding pump.
The bard g-tube goes into the stomach and is held in place by a plastic sponge that sits inside the stomach wall. The MIC-KEY tube has a balloon at the end of it that sits inside the stomach wall. The benefit of that is that the balloon can be deflated and the tube replaced without surgery.
The feeding pump goes on an IV pole and the tubing fits into it. The pump can be set for the amount of hours it will run. The feeding formula goes into an IV type bag.
After the surgery the boys were very sore and required morphine for a few days. Their appetites came back shortly after and they were sent home after 3 days.
We really haven't had too much trouble with the tubes except the snap on Josh's broke off and we had to have it replaced.
As I said before, its more work for you (getting the stuff ready and cleaning it after), but for us its been necessary. Its also good for giving meds that taste yucky.
The bard g-tube goes into the stomach and is held in place by a plastic sponge that sits inside the stomach wall. The MIC-KEY tube has a balloon at the end of it that sits inside the stomach wall. The benefit of that is that the balloon can be deflated and the tube replaced without surgery.
The feeding pump goes on an IV pole and the tubing fits into it. The pump can be set for the amount of hours it will run. The feeding formula goes into an IV type bag.
After the surgery the boys were very sore and required morphine for a few days. Their appetites came back shortly after and they were sent home after 3 days.
We really haven't had too much trouble with the tubes except the snap on Josh's broke off and we had to have it replaced.
As I said before, its more work for you (getting the stuff ready and cleaning it after), but for us its been necessary. Its also good for giving meds that taste yucky.
These kids have been told to eat eat eat all their lives, I dont think they are gonna change their mind at this point.
Reece got his placed this past March becuz he was just not eating & when he did eat the energy from the eating would just go straight to his labored breathing..so he was not gainning. After a few weeks w/ nightly feeds he had gained weight & family members EVEN the IV team noticed a BIG difference in his face & his coloring. It made me feel like I had made the right decision. He looks so much healthier!!!!
Yes it is a major deal & surgery but I think well worth it when it comes to your childs' well being & over all health!<img src="i/expressions/face-icon-small-smile.gif" border="0">
Reece got his placed this past March becuz he was just not eating & when he did eat the energy from the eating would just go straight to his labored breathing..so he was not gainning. After a few weeks w/ nightly feeds he had gained weight & family members EVEN the IV team noticed a BIG difference in his face & his coloring. It made me feel like I had made the right decision. He looks so much healthier!!!!
Yes it is a major deal & surgery but I think well worth it when it comes to your childs' well being & over all health!<img src="i/expressions/face-icon-small-smile.gif" border="0">
My daughter was received her g tube two years ago when she was 7 1/2. Although it can be problematic-and bothers her occasionally, without it she just cannot gain weight. Her lung function, which had declined after she failed to gain weight, inproved significantly. At 12 years old, you no longer have the control over their eating habits much of the time. If there is a chance to aid in their growth curve, then you must try it. Nothing ventured, nothing gained.If it doesn't work, it is very simple to reverse. My doctors say that this acts as a fallback when they are sick as well and don't feel like eating.
My doctors do feeds different than many centers-and concentrate the feeding over about 3-4 hours to get maximum use of the enzymes, and to allow the patient to wake up hungry in the morning. If anything, my daughter's appetite has gone up due to the fact that her body is used to consuming more calories.
I have another friend whose 9 year old has a g-tube and even though they hardly need it now, they have chosen to keep it in because of the ease of getting more calories in when sick or hospitalized.
My daughter is an avid skiier, gymnast, soccer player and swimmer. She just wraps her tube with an ace bandage when she is doing sports.
Being a boy and a lot smaller than your peers can also be a major emotional difficulty on top of dealing with CF
My doctors do feeds different than many centers-and concentrate the feeding over about 3-4 hours to get maximum use of the enzymes, and to allow the patient to wake up hungry in the morning. If anything, my daughter's appetite has gone up due to the fact that her body is used to consuming more calories.
I have another friend whose 9 year old has a g-tube and even though they hardly need it now, they have chosen to keep it in because of the ease of getting more calories in when sick or hospitalized.
My daughter is an avid skiier, gymnast, soccer player and swimmer. She just wraps her tube with an ace bandage when she is doing sports.
Being a boy and a lot smaller than your peers can also be a major emotional difficulty on top of dealing with CF
I really debated about getting my son his feeding tube but in the end the hopefull benefits weighed the surgery. He has done really well and has gained a good bit of weight. He is catching up to his peers and his self esteem has really been lifted. My son was 12 and only wieghed 60 lbs. on a good day. It has been 9 mths and he is up to 85 lbs. We would have never been here if it wasn't for that. We tried the boost and periactin to increase his appetite, believe me we tried everything we could but in the end the feeding tube was all we had left. This may sound weird but I had to send a picture to his surgeon but I actually have a picture downloaded of his feeding tube three weeks laters and will down load it here if seeing one would help. He has the mickey.
i hope this helps you to see it. Like I said we tried everything. This was our last choice and has been a wonderful experience. He has gained weight and has had no problem. This type of mickey has to be replace 3 times a year but it is very simple. We had his changed out in June 6 mths and it was simple of course the dr did it. It only took two mins to change out. I hope all goes well for you. You will notice his belly button on the second picture. That is where they went in with the light. Our surgeon was so good he had only minimal cramping for a day after that it was the normal sorness for having surgery.