Consideration for a tube feeding for my son not sure?

[tdkmak]

My son is 6 years old. He was diagnosed with CF in Feb. 2005. He had a checkup today and they now want to start tube feedings because of his weight. I am not sure if I want to do this or not. He has been taking Ultrase mt 18, Pancrecarb, ADEKs; zantac; and protein supplement. I am still very new at all this as it has only been little over a year. If there is any advice anyone can give me all is appreciated. I have left a list of his stats for the past year. Thank you.

03/05 -- 32 3/4 lbs ; 107.2 cm height
04/05 -- 34.8 lbs ; 108 cm
08/05 -- 35.2 lbs ; 110.2 cm
10/05 -- 35.9 lbs ; 110.4
01/06 -- 38 1/4 lbs ; 111.8 cm
04/06 -- 37.9 lbs ; 113.5 cm

Any helpful websites for CF would be great also.

 

[anonymous]

I would seriously consider it... Having extra weight will make it easier on him when it comes to fighting off colds and infections of other sorts. I know when I'm sick , I drop 10 pounds in a week, and spend the next year working at regaining them...But I know it can be scary, so good luck with whatever the decision is.

 

[anonymous]

This is an interesting decision. I think one is very helpful, but its tough and becomes just another physical reminder of CF for your child. When the docs tried to give me one I was around 10 and resisted and it proved to be some motivation for me to try to gain weight on my own. I don't remember this ever being brought up again, and although I have always been thin I have been able to maintain my weight and even gain when needed. That said it is a constant issue, but has gotten easier now that I am older. Good luck with your decision, its not easy, when it comes down to it extra weight is very good to have and this is a good way to make that happen.

 

[Jane]

My two sons got their g-tubes two years ago when they were 9 and 13. They are used to them now but it was an emotional decision. It is a ton of extra daily work, but in the long run, it has helped. I'd do it.

 

[anonymous]

I am sure you have been obviously trying to help him gain weight, so if you don't think there is any other way then get it, it will be worth it.

I assume one could have this removed later in life if you show you don't need it anymore?

 

[thelizardqueen]

I'm very against tube feeding, but this is just in regards to me. My mum always refused to put me on tube feeding, because she figured she could get the weight on me. And she always did. I've never had a tube. That being said, if it does help, and weight gain is something you always struggle with, and can't seem to put it on, then it may be something you want to consider.

 

[littledebbie]

I'm also rather against this but like Liz...that's just me. That being said let me bore you to tears with some of my thoughts on the subject <img src="i/expressions/face-icon-small-wink.gif" border="0"> <br><br>

I hesitate to respond to this because I'm not a Mother but I'm an opinionated type so here it goes: I don't think that sounds THAT skinny to me? Maybe a little under but not too bad and we're always a little under weight. And as he is not LOSING weight it seems a little aggressive to me. I worked very hard to keep my body as much "me" as possible. I think there is a definite price that comes with every thing that makes us "different" from other kids. It's hard enough as we get older but at least we're a little better equipped. I think I would try to hold off for as long as possible.<br><br>

Ultimately it's a personal thing of course. I don't think there really is a right or wrong here since he's not actively losing weight. Also I know people say when I get sick I lose like 10lbs in 3 days, which is true and I always did too but particularly as a kid, once I was getting over my bug, me and Mom would just buckle down and put that weight back on. For some reason getting back that weight was not as hard as then breaking the barrier. Okay that was confusing. Let me put it like this ...if I weighed 65lbs and was of course trying to gain weight and it was hard and slow going...then I would maybe get sick and drop to 55...as soon as I was feeling better I could get back to 63 of 64 rather quickly but once I would get back to my original 65 it would slow down again. Maybe I'm a freak...did anyone else experience that? I still do to this day, there just seem to be a few markers it's hard for me to move past, the 100 mark always being one of them...*sigh*<br><br>

Anyway back to you and your son, I vote to wait. He doesn't seem to be in BAD shape so why fix something before it breaks? You know him the best though if you think it's best for him then it probably is. But decide for yourself don't just listen to the Dr. Dr.'s tend to just focus on the physical health without weighing out the emotional/mental aspect which I think in turn plays back in to the physical. See...I'm an opinionated thing...sorry....will stop now...slowly back away from the keyboard.......

 

[anonymous]

From another CFer, non-parent, I agree with Liz and Debbie

 

[JazzysMom]

I addressed getting a feeding tube with my doc a few years back. I just couldnt get my weight back up after a bad exacerbation. She refused to do it. She didnt believe I was giving it my all with trying to put weight on myself & didnt want me to think a g tube was an easy solution. She told me of various problems which could arise etc which I actually knew from when my Dad had a g tube after his stroke. For me....my doctor was right. I wasnt giving it my all. When I get in a slump I tend to want a magic pill instead of putting in the 10000% that I should be. I am not saying that is the case with you, but it is an invasive procedure & like anything there are pros/cons to it. Its definitely a personal decision & although I think the doctor has a right to be concerned about the "what ifs", I dont think your child is in the danger zone. Maybe that is what the doctor wants to avoid, but it seems a bit premature to me! Good Luck in your decision!

 

[Ratatosk]

I know on other sites, people who have struggled and struggled with their child's weight and finally have after much thought and research ended up getting a feeding tube for their children and some have indicated that they wish they would've done it earlier. Be nice if you could hear from some parents who've been thru similar situations and get their opinion, feelings on it.

Just a side note.. My son will be 3 in June and last month when weighed at his clinic appointment was 32.6 pounds -- he's in the 65th percentile. Height I think was 36 inches, which put him in the 25th-50th percentile, but DH and I are both the short ones in our families. So my two and a half year old, is similar in weight to when your child was 5 years old -- and I think DS is too skinny.

Liza

 

[anonymous]

When I was 14 my doctors told me I needed a feeding tube. I was already in the hospital and wasn't given much of a choice. We had tried everything there was to gain weight and I was eating constantly. My body just couldn't keep up with the growing I was doing. I had a test done to see how fast my metabolism was going and it showed that in order for me to gain weight I would have to eat as much as a 200 pound man and lie still all the time. Obviously that was out of the question.

Thankfully I was given the choice which kind I wanted. Either an operation and one put in my side or I could pass a tube down my nose into my stomach every night and remove it the next morning. I was terrified of operations so I chose the latter. Every night for six years I shoved that tube down my nose. On the positive side it did help me gain weight and I was able to grow without much problems. On the negative side I had earaches and soar throats 90 percent of the time. I still had to do the tube even when I had a cold or was sick. I had Tonsillitis every other month for about a year strait. No matter the problems I wouldn't have changed my decision. I was in control and I could remove it every morning and be normal just like everyone else.

I did the tube feeding through middle school, High school, marriage and the first three months of my son's pregnancy. Then I got heartburn so bad I couldn't continue it and have never done it since. I drink Scandishakes now. One first thing before bed and one in the morning. The amount of calories I get in those two shakes equals the same amount I was getting in my tube feedings.

Katie

 

[JazzysMom]

WOW Katie......that is one hell of a choice to make. More power to you. I am glad it worked for you tho!

 

[anonymous]

HI --

I am the mom of two girls with c/f. My experience has been quite the opposite. Yes, when my 9 yr old had it put in it was VERY emotional. But, she gained 20 lbs from it. Now, the important thing to remember is that it is not fat. She has grown taller...meatier and more muscular and her feet grew. She is now the same height as her older sister who does not have the tube. Sometimes, I wish my older daugther would get one. It takes the pressure off of having to overload them with calories. She is sensitive in that area of her stomach, though. However, noone ever notices it. She cant bear halters but I wouldnt want her to anyway.

I believe your Doctor knows best. Recent studies have shown that proper nutrition helps maintain lung function. That is why you are hearing more and more kids getting the tubes. My daughter can actually turn it on and off herself. The other reason why they like to give it to the kids young is because the older they get they become noncompliant and more stressful of their appearance.

I always listen to my Doctor and she has never steered me wrong. In our situations, we need to rely on our Doctors. Good luck and if you hve any questions about it, let me know.<img src="i/expressions/heart.gif" border="0"> Deb