My son is 15 years old. He has Cystic Fibrosis and insulin dependent diabetes. He is in the hospital right now with a lung infection. Over the last year or so the doctors have been wanting to give my son the feeding tube, he has resisted. Now with his weight only at 89 lbs. they are pretty much giving no other option but to get the g-tube. My son, like most CF patients already go thru so much and take numerous drugs already that adding one more thing is making me and my son overwhelmed. I would like to know if there is someone that could give some advise on this subject. I don't know much about the feeding tube. I would like to know the pros and cons that other cf patients have experienced with the g-tube. Thank you so much. Crista
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The G-Tube
- Thread starter anonymous
- Start date
Hi Crista-
I understand you becoming so overwhelmed. It is so hard to helplessly watch our children suffer. Keep in mind that you are helping him with encouraging and loving words. I am so sorry to hear that your son is having such a hard time. Did you try posting this on the young adults and teenagers forums? I personally do not have experience with the G-Tube, but when my son was in for his first hospitalization, the young lady across from our room had a newborn that had to have the G-Tube. Maybe a good way to look at this will be all the positives. Your son can talk to tell you what hurts and where, and his communication with you will help him 100% more by your loving response. I will have you both in my prayers. I am sorry I wasn't much help.
I understand you becoming so overwhelmed. It is so hard to helplessly watch our children suffer. Keep in mind that you are helping him with encouraging and loving words. I am so sorry to hear that your son is having such a hard time. Did you try posting this on the young adults and teenagers forums? I personally do not have experience with the G-Tube, but when my son was in for his first hospitalization, the young lady across from our room had a newborn that had to have the G-Tube. Maybe a good way to look at this will be all the positives. Your son can talk to tell you what hurts and where, and his communication with you will help him 100% more by your loving response. I will have you both in my prayers. I am sorry I wasn't much help.
Hi, Crista.
I don't know a whole lot about the g-tube, though when I was about 16-17 my docs were very aggitated that I resisted and refused one. Is it that your son is not eating or is it just that he can't gain weight even with eating alot? I know my problem was that I was never hungry and felt nauseous alot. I was always really underweight until this year when I finally got out of the 100's. I don't know how I did it, I guess I just started exercising more and eating alot more and loved the way I looked and felt when I put on weight.
I guess my questions are why your son is at a low weight (along with having the CF)... there are other things such as appetite stimulants out there that may help (and MAY be worth trying first)... Also, if nausea is the problem, I have had luck with Phenergan. It helps to relieve nausea and usually conks me out for a couple hours. When I wake up, I'm usually starving and eat alot. (Of course, that is just my experience and everyone is different)... Also, maybe they could try different enzymes (if he is loosing weight even though he's eating alot, sometimes it means the enzymes aren't working). Of course, I'm not trying to deter you from a g-tube, as I do think this is a great way to get some much-needed weight on us CFers! Ineveitably, it is up to you, your son, and your docs, of course, and speaking at length with them about it is advised. I also would deffinately suggest hearing what others have to say that have gotten a g-tube. I think in some cases, it is a really great idea to put well-needed weight on fast. I'll be thinking of you and hope all goes well.
Sonia
26 w/CF<img src="i/expressions/sun.gif" border="0">
I don't know a whole lot about the g-tube, though when I was about 16-17 my docs were very aggitated that I resisted and refused one. Is it that your son is not eating or is it just that he can't gain weight even with eating alot? I know my problem was that I was never hungry and felt nauseous alot. I was always really underweight until this year when I finally got out of the 100's. I don't know how I did it, I guess I just started exercising more and eating alot more and loved the way I looked and felt when I put on weight.
I guess my questions are why your son is at a low weight (along with having the CF)... there are other things such as appetite stimulants out there that may help (and MAY be worth trying first)... Also, if nausea is the problem, I have had luck with Phenergan. It helps to relieve nausea and usually conks me out for a couple hours. When I wake up, I'm usually starving and eat alot. (Of course, that is just my experience and everyone is different)... Also, maybe they could try different enzymes (if he is loosing weight even though he's eating alot, sometimes it means the enzymes aren't working). Of course, I'm not trying to deter you from a g-tube, as I do think this is a great way to get some much-needed weight on us CFers! Ineveitably, it is up to you, your son, and your docs, of course, and speaking at length with them about it is advised. I also would deffinately suggest hearing what others have to say that have gotten a g-tube. I think in some cases, it is a really great idea to put well-needed weight on fast. I'll be thinking of you and hope all goes well.
Sonia
26 w/CF<img src="i/expressions/sun.gif" border="0">
Hi Crista,
I'm sorry - you must be so frustrated with your son's situation. I hope his hospital stay is of some help. We came VERY close to putting my son on a G-Tube, but then he started to gain weight. Our pulm. and dietician told us that many famililes usually see this as a help and a relief. Not only do you have the every day worries of cf, but you are trying to think of ways to help your son gain weight. In my opinion, this aspect of cf (at least for our family) is the MOST difficult to deal with. I'm constantly trying to think of new ways to add calories and fat....and, many times, meals become a power struggle. I have many friends who have cf children with g-tubes. To most, they are grateful for them because they add many calories to their child's diet without dealing with other nutritional issues. Am I making sense? I wouldn't completely rule it out just yet - - do some research and maybe ask your cf clinic for some references of other parents who have put their child on the g-tube. This can really help! Best of luck and keep us posted!
Carey
I'm sorry - you must be so frustrated with your son's situation. I hope his hospital stay is of some help. We came VERY close to putting my son on a G-Tube, but then he started to gain weight. Our pulm. and dietician told us that many famililes usually see this as a help and a relief. Not only do you have the every day worries of cf, but you are trying to think of ways to help your son gain weight. In my opinion, this aspect of cf (at least for our family) is the MOST difficult to deal with. I'm constantly trying to think of new ways to add calories and fat....and, many times, meals become a power struggle. I have many friends who have cf children with g-tubes. To most, they are grateful for them because they add many calories to their child's diet without dealing with other nutritional issues. Am I making sense? I wouldn't completely rule it out just yet - - do some research and maybe ask your cf clinic for some references of other parents who have put their child on the g-tube. This can really help! Best of luck and keep us posted!
Carey
I had a G-tube put in when i was 11, at first i hated it but now i know that if i didn't have it i wouldn't be around today. it's not as bad as some people think. Has you son tried drinking ensure or whatever his doc want's him to use? i know some CF's who drink the stuff and don't need a G-tube.
Thank you so much for your replies. I really appreciate this support right now. I have been feeling really confused and worried. My son is usually hospitalized between 3-5 times a year. Which never gets any easier or used to. He has many complications which is why he is in the hospital so much. The diabetes really gets out of control when he has an infection, so the endo drs. need to really be aggressive and watch him close. He also is allergic to almost all antibiotics that he is sensitive to. So he has to go thru a desensitation in PICU for a couple of days before his body can take a full dose of those drugs. My son, Matt/cf has a great appettite, he can eat more then 2 grown men. He is very good about taking his pills. He uses Ultrase MT20- and takes the max. allowed. Most of his life he didn't really struggle with his weight. It wasn't till about a year ago, he started to level out and now he is starting to lose weight. But even with all the complications my son has, he is still pretty active and plays sports. He plays Roller Hockey on a league, he gives his all and keeps up pretty well. I am really doing my research and asking as many people as I can, of their own experiences. I was feeling very a lone and scared till now. I love my son with my whole heart and soul and I just want to make the right decision for my son. I can't thank you enough for your concern and thoughts. Matt is scheduled for his upper GI tomorrow so things are moving fast and im glad i got replyies so fast. I will keep you informed. God Bless You, Crista
I have twins, one got her tube at 10 months old and removed at 11 years old , my other child got a tube a 5 years old and still has it, for us it has been the best thing , when they gained weight they stopped getting sick as much. I tube feed only at night and she eats all day.
NoDayButToday
New member
I was very hesistant to get a feeding tube-- but at a certain point I realized (or accepted) that without it, I wouldn't gain weight. After that, I can't say I was HAPPY to get it, but I accepted that it would become another part of my CF routine. And now, I have to say, it may be one of the easiest parts. It takes about 10 minutes to set up at night, and maybe 5 minutes to disconnect in the morning- and I sleep right through the feed. As for its appearance, it doesn't show through my clothing and I wear a small band aid over it when I want to wear a bikini- it's hardly noticeable (I've also had meconium ileus scars my whole life, and don't really care when people do a double take). As hard as it was to get the tube (and the recovery from surgery was somewhat painful), I'm happy I did it. Good luck
Hi. My daughter had to have a g-tube when she was an infant and she had it for about three years. It was easy to use and really helped her get the nutrition she needed. The biggest problem was that after a while her body kept trying to close the hole. Extra (granulation) tissue would grow around the openning and we would have to burn it off. It didn't hurt her to burn it with the sticks but she didn't like being held down while we did it. In fact, I burned myself with the sticks plenty of times and didn't feel a thing. When she was ready to get rid of the feeding tube the hole wouldn't close so she had to have a surgery to close it. I hope this helps.
Hi , I have a daughter who is four with CF. and my biggest worry is gaining enough weight. I have reasently met a fourteen yr old girl. Perfectly healthy with her CF. just not getting enough calories no matter what she ate. I was shocked to find out she was now on a feeding tube, only at night however, but still, she had to have it. Made a big difference, she gain 15lbs. within weeks,, then she could get off of it. A feeding tube in my opinion, is a small price to pay, and no offense but at 15 yrs old., you either get it, or you don't. But in the end who suffers. This is an age that too bad so sad but you're gona do it and that is that. Unless your 15 yr old graduates from medical university and has a degree in doctery, take the feeding tube and GET OVER IT. In the end, who is the boss, who pays the morgage and who loves YOU!!! And make sure he doesn't forget it, what might not be cool in one way, seeing it from a different angle gives a whole new perspective.
I
IG
Guest
I'd add my two cents but Coll pretty much sums up what I would have said.
<blockquote>Quote
<hr><i>Originally posted by: <b>Anonymous</b></i>
My son is 15 years old. He has Cystic Fibrosis and insulin dependent diabetes. He is in the hospital right now with a lung infection. Over the last year or so the doctors have been wanting to give my son the feeding tube, he has resisted. Now with his weight only at 89 lbs. they are pretty much giving no other option but to get the g-tube. My son, like most CF patients already go thru so much and take numerous drugs already that adding one more thing is making me and my son overwhelmed. I would like to know if there is someone that could give some advise on this subject. I don't know much about the feeding tube. I would like to know the pros and cons that other cf patients have experienced with the g-tube. Thank you so much. Crista<hr></blockquote>
Well, you don't really have a choice here sadly. If your son needs it, then he needs it.
I refused mine till age 17, and it really wasn't the best idea to refuse it for so long..... It helped alot for a while, and got me out of the dangerously low weight area. So it was a good idea.
Now, even though I don't need it, I still keep it in.
I mainly just use it now for doing certain liquid medications... (namly the krystalos/go-lightly)
I also keep it in becuase it really compliments my looks. <img src="i/expressions/face-icon-small-tongue.gif" border="0">
The down sides to a G-Tube can be annoying though...
Like doing the treatments well trying to sleep... Arg... The horrid times I had with that... Waking up with the peptimein all over my bed, ruining my sheets, and almost ruining my matress.... It always seemed to come out. It also makes you go the bathroom more, feel a little bloated well doing it, and can wake you up alot to go the bathroom.
If you wanna do it in the day instead of the night (if you actually have the time to spair), then it's about an 8 hour treatment... It also makes it hard to be mobile with...
The bolases can be really annoying too. Not really painful, but it will give an akward/uncomfortable feeling. Like you ate something bad.
Then there's also your sons social life. Having a tube in his stomach may make him feel crappy about doing things like swimming, or having friends over to find a hospital type pole/pump in his room. Ofcourse, this dosen't matter if your son has some solid self esteem, and friends that already know/understand all of this.
Then there's the fact that it can leak... Around it will just kinda ooze, and a puss type crap, that almost reminds you of what you blow out of your nose, will come around it, unless you keep it REALLY clean, and clean it about 2x a day.
This could also cuase the skin to dry, and crack, and bleed around it, which means you will most likly get something called "Triamcinolone Acetonide Cream" to keep that from happening, which also has to be applied often.
Then you also have to have it replaced sometimes, which can be semi painful, and really annoying. Unless you have the new one that's held in by the little water pouch... Then it's pretty easy, but still can be a little irritating feeling.
Overall, the tube is a good idea if your son needs it, but it does need a good deal of maitinance and attention, and can infact be a big hassle.
The worst thing will be getting it in. It's gonna feel like he was shot in the stomach, and hurt for about a week. Just don't let the nurses try to turn it well he's in the hospital after it's put in. Turning it when it's just put in is the worst...
I'm sorry if alot of this post contained things that you probably didn't wanna hear, but it's been the reality of my experience with the G-Tube that im telling you about. I just want you and your son to be ready if you do get it.
I wish you both the best.
<hr><i>Originally posted by: <b>Anonymous</b></i>
My son is 15 years old. He has Cystic Fibrosis and insulin dependent diabetes. He is in the hospital right now with a lung infection. Over the last year or so the doctors have been wanting to give my son the feeding tube, he has resisted. Now with his weight only at 89 lbs. they are pretty much giving no other option but to get the g-tube. My son, like most CF patients already go thru so much and take numerous drugs already that adding one more thing is making me and my son overwhelmed. I would like to know if there is someone that could give some advise on this subject. I don't know much about the feeding tube. I would like to know the pros and cons that other cf patients have experienced with the g-tube. Thank you so much. Crista<hr></blockquote>
Well, you don't really have a choice here sadly. If your son needs it, then he needs it.
I refused mine till age 17, and it really wasn't the best idea to refuse it for so long..... It helped alot for a while, and got me out of the dangerously low weight area. So it was a good idea.
Now, even though I don't need it, I still keep it in.
I mainly just use it now for doing certain liquid medications... (namly the krystalos/go-lightly)
I also keep it in becuase it really compliments my looks. <img src="i/expressions/face-icon-small-tongue.gif" border="0">
The down sides to a G-Tube can be annoying though...
Like doing the treatments well trying to sleep... Arg... The horrid times I had with that... Waking up with the peptimein all over my bed, ruining my sheets, and almost ruining my matress.... It always seemed to come out. It also makes you go the bathroom more, feel a little bloated well doing it, and can wake you up alot to go the bathroom.
If you wanna do it in the day instead of the night (if you actually have the time to spair), then it's about an 8 hour treatment... It also makes it hard to be mobile with...
The bolases can be really annoying too. Not really painful, but it will give an akward/uncomfortable feeling. Like you ate something bad.
Then there's also your sons social life. Having a tube in his stomach may make him feel crappy about doing things like swimming, or having friends over to find a hospital type pole/pump in his room. Ofcourse, this dosen't matter if your son has some solid self esteem, and friends that already know/understand all of this.
Then there's the fact that it can leak... Around it will just kinda ooze, and a puss type crap, that almost reminds you of what you blow out of your nose, will come around it, unless you keep it REALLY clean, and clean it about 2x a day.
This could also cuase the skin to dry, and crack, and bleed around it, which means you will most likly get something called "Triamcinolone Acetonide Cream" to keep that from happening, which also has to be applied often.
Then you also have to have it replaced sometimes, which can be semi painful, and really annoying. Unless you have the new one that's held in by the little water pouch... Then it's pretty easy, but still can be a little irritating feeling.
Overall, the tube is a good idea if your son needs it, but it does need a good deal of maitinance and attention, and can infact be a big hassle.
The worst thing will be getting it in. It's gonna feel like he was shot in the stomach, and hurt for about a week. Just don't let the nurses try to turn it well he's in the hospital after it's put in. Turning it when it's just put in is the worst...
I'm sorry if alot of this post contained things that you probably didn't wanna hear, but it's been the reality of my experience with the G-Tube that im telling you about. I just want you and your son to be ready if you do get it.
I wish you both the best.