time for a feeding tube?

[anonymous]

Hi my son is 3.5 yrs his weight is 29lbs , hieght 36 inchs.
his dr thinks its time for a feeding tube...but I am not so sure he looks O.K to me.
maybe Iam just in denial? They are concerned because he has gained 2 lbs in a year, his appitite is good , it just seems drastic I just dont think he needs one at this point.
any feedback would be appreciated, When do you know its time?<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[2sickkids]

what type a ng tube or a g tube

 

[thefrogprincess]

I would get a second opinion. If his appetite is good and he takes enzymes his nutrition should be ok. CF kids tend to be behind in growth and weight anyway. My brother got his g tube only because he was a really picky eater and was skinny as a rail. He did great with his tube though and gained weight and grew a bunch. Good luck.

 

[anonymous]

his doctor suggested g tube

 

[anonymous]

i am a lot older and never had trouble gaining weight but at 25 my doc thought i needed one. i hated it! it was more trouble then it was worth. it made me sick to my stomach and hurt really bad when it came out. i would look into some other options. your his mom and i always think moms know best. my mom always did. good luck and maybe find out about more, and or different enzymes.

 

[luke]

See the attached link: so long as your childs appetite is good, I have to agree with your assessment. I would be interested in hearing your doctors reasoning though, maybe you should ask?


http://pediatrics.about.com/cs/growthcharts2/l/bl_ibw_calc.htm



luke

 

[luke]

never mind, 2 lbs in a year..I got it, too busy talking to listen, sorry....


luke

 

[Purplelungs]

some cfers can have a good appitite and take enzymes and do all that they need to and still not gain properly. I would still ask docs reasonings and maybe ask around what other cf docs think about it. but maybe he is trying to head something off before it gets to bad to where he gets to sick and looses lots of weight. *shrug*...anyway just wanted to let you know sometimes cfers can eat and eat and still struggle with gaining even keeping weight on with good appitites

 

[anonymous]

If it makes you feel any better, my daughter with CF is 39" tall and just hit 30 pounds last month - she is five years old. Although we are always threatened with a tube at clinic, she has yet to get one and is doing just fine. I feel as long as she's not losing, I want to put it off. I'm not convinced it's always the perfect solution. Doctors do disagree though, they are worried that if the person becomes very sick, they won't have much to fight with if they are underweight. They have a point but it's a hard decision to make, I know. I wish you the best!

 

[thefrogprincess]

Even if your child gets sick to the point of not eating they can put in a nasal-gastric tube (up the nose and down the throat) to feed them. A g-tube is pretty serious surgery though and can somewhat limit your childs activities because you don't want the tube coming out if they overexert themselves (my brothers came out from snowboarding once and the doc said he shouldn't do it anymore even though it was great exercise).

 

[anonymous]

Hi --

My youngest daughter is 8 and got her feeding tube in first grade so she was 6?? Anyway, I too was in denial and very depressed over it. But, let me tell you.... she has gained 20 pounds in those two short years. It is not fat either. It is height and bones. Her feet grew. She got so much taller and healthier.

She has a mickey button. Yes, the balloon has popped but when that happens I just replace it. It is not a big deal. My Doctors have never restricted her activities. I just always have a replacement tube available in case of emergency. If she does experience nausea, I cut back on the amount of formula that she is getting.

My feeling is that you really have to trust your Doctors. I never question anything they say because they have always done the right thing for my girls and I feel that it is their knowledge that keeps the kids healthy. They have also learned through research that proper nutrition correlates with healtheir lung function that is why you will hear more and more about CFers with feeding tubes. The Drs also prefer to do this when they are young because once they hit the teens the kids no longer agree to this procedure.

Keep in mind that these kind of new ideas are what is helping to raise the average life expectancy for our kids. Good luck -- I hope I helped give you positives to think about to make your decision.

Deb -- Mom of 3 - 2 w/CF

 

[allie1]

My daughter is also 3.5yrs and she weighs 30.5 lbs and is 37inches tall. Her CF team always seems happy with her height and weight and have never mentioned a feeding tube. I know every child is different but our children have basically the same growth statistics. I guess my daughter does gain it a little faster....she gains about a pound in 3 months.

Amy

 

[KRWilliams]

My daughter was 19mo old and weight 16lbs. We put a feeding tub in her on her 2nd birthday. She was still having trouble gaining weight. She is a few weeks away from 12yrs old and she only wieghts 55.5lbs and is 4 1/2' tall. We just put a new tub in her in January it is a G J tub and I wish we would have done it years ago. She has gained 2 lbs in 3 mon. and for her that is really good. I am really happy that we did it. But all cfers are not the same. She would eat all the time but not gain anything. If she did and then she would get sick and loose it and then some. But know that we put the G J Tub in she is doing really good and has not lost any weight, even when she got sick.I really hope everything go OK for you and your little boy. God Bless.

 

[anonymous]

Hello... My daughter is 9 years old and weighs 55 lbs we have been threatened with the feeding tube but it has not happened yet and i do not think that we are really open to this option yet, she does look thin but she is very energetic .... she does not gain alot of weight either i just hope that the tube will not have to be an option for us any time soon

good luck

kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

My son is 3 years old and weighs 28 pounds. His cf doc hasnt mentioned anything about a tube. Just wanted to let you know

 

[anonymous]

Thank you for all your input, the dr reasoning for a feeding tube is my son has just been diagnosed with wheat allergy he also is allergic to eggs they are worried he cant get the callories he needs, but we are going to give it one more month before making any big descision.

 

[anonymous]

My daughter is also 3.5 years. She weighs 33 pounds. However, she was 27 pounds 7 months ago. Her doctors were concerned and so was I. I was the one to bring up a feeding tube at clinic. They said yes she was headed in that direction. She was and always has been a picky eater. She was on a feeding tube when she was an infant for a few months until we found out that her food refusal was due to a milk allergy. I already knew the benefits of getting the calories down and watching her gain weight when she wouldn't do it herself.

Have you done a calorie count on your son? You need to know how much he is taking in and how much you could add to his diet by tube feedings. If he is eating enough calories, then the tube feedings wouldn't be as much help as it would be for someone who is eating very little.

My daughter has gained weight this year due to the fact that she finally is sitting at the table and eating. Eating is not so much a battle anymore, she is a willing participant (although I still have to feed her!!!!). I think her age has a lot to do with her decision to sit and eat. She also has started to use a decongestant her GI doctor prescribed, Cyproheptadine. It has a side effect of hunger. We don't use it that often though, but when we do it has helped.

One of things I have always heard is that weight and lung function are correlated in those with cf. That is why I am for the feeding tube if adequate weight gain does not improve after all other options have been tried.
Sharon, mom of Sophia, 3.5 and Jack, 1.5 both with cf

 

[perky79]

3 yrs old is a very young age for a feeding tube. Remember kids are cruel and when it comes time for school a tube is just one more thing for kids to poke fun at.

5 months ago my doctor suggested a g tube for myself. I was taking in roughly 4,000 - 5,000 calroies a day and not gaining. I said give me a few months to decide. I went and hired a weight trainer. I now eat 3,500 calories a day, drink much more water, take an over the counter multi vitamin, and excercise regularly. I have gained 20lbs in 2 months. My doctor cant believe it. about 10lbs in fat and 10lbs in muscle.

I know your 3 yr old son cant do what I can do, but just because your doctor says its the only way, that isnt always the case.

In fact i have read a few studies with testosterone supplements for young cfers. You may want to look into that.