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Old 10-21-2005, 09:12 AM   #1
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mommyfullohope HB User
Anybody else?

My 13 montho-old daughter is having trouble gaining weight. Her enzyme dosage seems to be good because she does not have any signs of malapsorbtion (gas, bloating, greasy stools) and she has been on a high calorie diet since she was just a few months old. She now drinks Pediasure, Just For Kids, and we use Duocal in everything. And still she only weighs 16 pounds, 14 ounces. She is in like the 1st percentile or lower now. Anybody else experiencing this?

I am getting really scared.

Thanks!

 
Old 10-22-2005, 06:50 PM   #2
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Re: Anybody else?

My son is 3 years old and we had ALOT of trouble gaining weight- no matter what we did. It seemed like every minute of everyday was spent trying to get him to eat, thinking about what he ate, cooking meals, praying he would have 1 more bite, it was soooo tough.

Our nutritionist had started talking to us about a feeding tube when he was around 1. I was very against it--- I would cry at the thought of it.

Finally around this time last year, she said we really needed to do it- he was in the 5th percentile, and if he got sick, we could be in real trouble because he had no reserves.

Reluctantly, we did the tube. It was not without its problems, but life is SO different now. He's well into the 25th percentile- gets around 750-800 calories at night, our insurance covers it, and we no longer are a slave to the food intake of our little guy. I realized we were putting alot of pressure on him too, it wasn't just us that were feeling it. I only wish we did it sooner- sometimes these little ones just cannot physically eat as much as their body needs to gain weight.

 
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Old 10-23-2005, 09:50 AM   #3
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Re: Anybody else?

Thanks for replying. It's good to hear that someone else is having (or has had) this problem.

I cry when I think about a feeding tube, too and they haven't even suggested it yet. I wish my daughter would get back to the 5th percentile - she has dropped below that. Glad to hear that, if she does have to use a feeding tube, it seems to have good results.

Thanks again.

 
Old 10-24-2005, 07:48 AM   #4
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Re: Anybody else?

We've always struggled to keep DS in the 50th percentile. He was on formula -- high calorie for the first part of his infant career. Then as he got older we put cream in his formula -- he was on formula until he was about 1 1/2 years. We were told at 6 months to feed him normal human food, just grind or chop it up finely -- not to bother with baby food, which was low in fat and salt. But ds had issues with texture, and loved baby food mac & cheese -- so we did feed him that and baby meats, although I'd add a little butter. He loved yogurt, so I'd give him whole milk yogurt or add a bit of cream.

Now that he's a toddler, I mix up carnation instant breakfast with whole milk and an ounce of cream per serving with every meal. And we put a dollop of olive oil in his casseroles, add butter...

 
Old 10-24-2005, 08:44 AM   #5
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Re: Anybody else?

My son, 16 mo, has been hanging around 26lbs since he was about 13 months. I think he has gained a little bit in the last month or so. He goes to CF clinic tomorrow so I'll see what they have to say then. Around 13 mo he decided that he didn't want to drink bottles anymore which was a big source of his calorie intake. He also has a wheat allergy so its tough to find stuff that he can eat. He does like to eat and it seems as though he is always eating. I don't think he is malabsorbing, no greasy stool, and his dietician says he is on the high end dose for enzymes. Although he has days where he will poop alot and have some gas. Maybe I'll have some answers tomorrow. Hope you get things figured out with your daughter.

 
Old 10-24-2005, 09:11 AM   #6
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Re: Anybody else?

It's not good that so many people are struggling with the weight thing, but it is good to have someone relate to what we are going through.

My daughter's weight is constantly on my mind and I find myself constantly trying to think of ways that I can be a stay at home mom so I know what she is eating at all times.

She seems to eat pretty well, but would rather not have a bottle, which is where most of her calories come from. I am giving her high calorie drinks and adding duocal. I think it will work, but every time she gets a little sick - even getting a tooth - she loses several ounces and we can't seem to get ahead.

It's all very scarey and a little frustrating. But, she does have a lot of energy and spunk!

 
Old 10-24-2005, 09:50 AM   #7
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Re: Anybody else?

Easier said than done, but try not to obsess about it and worry about it. You're doing what you can and you can't force your child to eat more and eat the kinds of things you want her to.

I didn't care that DS was still on formula at home or using a bottle. I did whatever I could to keep the calories on him. His day care is great 'cuz they sneak in butter, feed him peanut butter, snacks, give him carnation instant breakfast. This past summer he drove us nuts 'cuz he went thru a typical picky toddler noneating phase. So I went from a tbsp of cream in his carnation instant breakfast to an ounce, which adds 100 calories to his milk. At least now he's starting to ask for things -- juice, fruit, peanut butter, crackers.... It's sooo thrilling that he's interested in food.

Just do what you can to add calories and don't let the food issue control your life or get in the way of enjoying your child just being a child.

 
Old 10-29-2005, 01:54 PM   #8
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Re: Anybody else?

We just came back from our CF clinic visit & have heard a few interesting things I'd like to share regarding nutrition. First let me say that our nutritionist is one of greatest-- no exageration, she is SO smart, helpful (I've spoken to her as much on her home phone as the hospital phone) and very in tune with anything CF realted. And she's been at it for over 20 years.... with that said:

There have been significant studies around lung capacity & mortality as it relates to the growth chart. Children who average OVER the 50th percentile for weight have increased numbers in both of these areas. Not that she (or myself for that matter) are big on pushing the feeding tube, but anything that can be done to increase weight needs to be explored. CF children should be on "the Chubby side of Normal".

Also, good nutrition promotes lateral growth, (height)- the taller you are, the bigger the lungs. The bigger the lungs, the better when it comes to diminished lung capacity- 50% of a large lung is far better off than 50% of a small lung.

I understand even more now why my son is on his feeding tube, We were always at the 5th ,10th or sometimes 20th the growth chart. I am so happy to say that for the first time in my 3 year olds life- he hit the 50th- for weight, height, and weight for weight.

Last edited by sherry092; 10-29-2005 at 01:55 PM.

 
Old 10-31-2005, 06:55 AM   #9
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Re: Anybody else?

We just got back from our appointment in the City and the doctor stressed pushing cream -- get DS used to the taste of cream 'cuz an ounce adds an extra hundred calories. And I can see his point 'cuz DH was raised on skim milk and can't stand the taste of even 1% milk. Says it's too rich.

 
Old 12-14-2005, 02:50 PM   #10
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mommyluvsjesus HB User
Re: Anybody else?

Hi there, my dd is 8 months and is doing fine with growth, not great but okay. I have a friend though who's 3 yr ol ds has a feeding tube and is so thrilled about it because, as someone else said, they don't have to constantly fight the food situation. They look at it as a great thing. Just thought I'd let you know...........

 
Old 02-07-2006, 05:50 PM   #11
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Sayer Ji HB User
Re: Anybody else?

I would definitely add Taurine to the CF sufferers diet, which has been clinically shown to increase the absorption of fats and fat soluble vitamins. And eat organically...it will make a tremendous difference.

 
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