weight issues

[anonymous]

I have been reading all about the weight issue and it sure scares me. I feel that this is so hard to have to worry every day it seems about Aspen gaining or growing in size. I know this is part of the disiese but it sounds like it is an ongoing battle for most everyone. How hard for the parents to worry about all this and getting sick too. It is almost the more you know the worse it gets.

Margo

 

[anonymous]

I have been reading all about the weight issue and it sure scares me. I feel that this is so hard to have to worry every day it seems about Aspen gaining or growing in size. I know this is part of the disiese but it sounds like it is an ongoing battle for most everyone. How hard for the parents to worry about all this and getting sick too. It is almost the more you know the worse it gets.

Margo

 

[Jane]

Margo, It does seem like that. Don't try to learn it all at once, it will becoming overwhelming.

The eating is always an issue. We parents tend to make it more of an issue than it should be -which makes it harder. Just take it day by day.

 

[Jane]

Margo, It does seem like that. Don't try to learn it all at once, it will becoming overwhelming.

The eating is always an issue. We parents tend to make it more of an issue than it should be -which makes it harder. Just take it day by day.

 

[skh]

Margo, I agree with Jane. I really don't tend to worry about Abby's eating habits anymore. Once Aspen figures out what he likes for food than you can just elaborate on that. This is just all so much to take in all at one time. Just take it day by day and you will do fine. There are times when I have to remind myself to just relax and breath and then things tend to work out.

Take care,
Sue

 

[skh]

Margo, I agree with Jane. I really don't tend to worry about Abby's eating habits anymore. Once Aspen figures out what he likes for food than you can just elaborate on that. This is just all so much to take in all at one time. Just take it day by day and you will do fine. There are times when I have to remind myself to just relax and breath and then things tend to work out.

Take care,
Sue

 

[Mockingbird]

Actually, weight tends to go hand-in-hand with everything else, meaning when a CFer is at a healthy weight our lungs are clearer, colds don't hit us as hard, etc. That's the way it is for me, anyway.

I guess what I'm saying is don't think of it as you have to worry about weight <i>and</i> lungs <i>and</i> getting sick <i>and</i> whatever else; think of it as if his weight goes up, then so will his lung function, and if his lung function goes up he won't be as likely to get sick and if his lung function goes up, he will have a better appetite and if his appetite goes up, he'll gain weight and if he gains weight he won't be as likely to get sick... etc. That's what helps me, anyway. =-)

 

[Mockingbird]

Actually, weight tends to go hand-in-hand with everything else, meaning when a CFer is at a healthy weight our lungs are clearer, colds don't hit us as hard, etc. That's the way it is for me, anyway.

I guess what I'm saying is don't think of it as you have to worry about weight <i>and</i> lungs <i>and</i> getting sick <i>and</i> whatever else; think of it as if his weight goes up, then so will his lung function, and if his lung function goes up he won't be as likely to get sick and if his lung function goes up, he will have a better appetite and if his appetite goes up, he'll gain weight and if he gains weight he won't be as likely to get sick... etc. That's what helps me, anyway. =-)

 

[anonymous]

I've tried not to let weight and eating become an issue, a power struggle. Early on it was difficult because the doctors were telling us DS needed to gain weight, we were under instructions to feed him every 3 hours and it was tough because he just wasn't interested in eating. We bumped up the calories by adding more powdered formula to the water (as per the dietician). People would tell us, not to worry, that when he'd get hungry, he'd eat. But he wouldn't. not sure if it was a bottle aversion, problems because he had bowel surgery.... The first year of DS's life was filled with lots of stress. Now that he's older he's able to tell us that he wants something to eat or drink. Last night he asked for juice "in mine hand" and some nuts (sunflower seeds) for a snack. We're just thrilled that he's interested in food. We were beginning to think he was some sort of alien child 'cuz both DH and I come from families who love cooking, love eating -- too much. And DS would rather drink water and gnaw on carrot stick than eat homemade cookies. Liza

 

[anonymous]

I've tried not to let weight and eating become an issue, a power struggle. Early on it was difficult because the doctors were telling us DS needed to gain weight, we were under instructions to feed him every 3 hours and it was tough because he just wasn't interested in eating. We bumped up the calories by adding more powdered formula to the water (as per the dietician). People would tell us, not to worry, that when he'd get hungry, he'd eat. But he wouldn't. not sure if it was a bottle aversion, problems because he had bowel surgery.... The first year of DS's life was filled with lots of stress. Now that he's older he's able to tell us that he wants something to eat or drink. Last night he asked for juice "in mine hand" and some nuts (sunflower seeds) for a snack. We're just thrilled that he's interested in food. We were beginning to think he was some sort of alien child 'cuz both DH and I come from families who love cooking, love eating -- too much. And DS would rather drink water and gnaw on carrot stick than eat homemade cookies. Liza

 

[babyjaden2004]

We are dealing with this right now. Took Jaden for her weight check and she lost instead of gaining. I was pretty bummed but I've done everything I could to push those calories. She eats what she wants and I can't force her to eat. I try not to let it drive me crazy.

 

[babyjaden2004]

We are dealing with this right now. Took Jaden for her weight check and she lost instead of gaining. I was pretty bummed but I've done everything I could to push those calories. She eats what she wants and I can't force her to eat. I try not to let it drive me crazy.

 

[Allie]

DOn't panic too much about the weight thing, just be aware of it. There are lots of sneaky ways to put moe fat in someone's diet too, like adding half and half to their milk or things like that. Don't beat yourself up because of what your child likes to eat.

If you want any high fat tips, you can email me (It's in my profile). I'd be glad to help.

 

[Allie]

DOn't panic too much about the weight thing, just be aware of it. There are lots of sneaky ways to put moe fat in someone's diet too, like adding half and half to their milk or things like that. Don't beat yourself up because of what your child likes to eat.

If you want any high fat tips, you can email me (It's in my profile). I'd be glad to help.

 

[Abby]

Wow, sounds like my daughter. We constantly worry about what she's not eating and found that by not pushing food as much that she's eating more. We have "Abby's cupboard" and have all of her snack foods in it and she's free to grap what she wants. We also really push the Pediasure, which is expensive, but worth it. I've found I've been limiting her to 3 cans a day, she'd drink more if I let her. I also try to make her a scandishake every day, which is loaded with fat and calories. That way I don't have to worry that she prefers raisins or fruit over chips or cakes as a snack. Good Luck!

 

[Abby]

Wow, sounds like my daughter. We constantly worry about what she's not eating and found that by not pushing food as much that she's eating more. We have "Abby's cupboard" and have all of her snack foods in it and she's free to grap what she wants. We also really push the Pediasure, which is expensive, but worth it. I've found I've been limiting her to 3 cans a day, she'd drink more if I let her. I also try to make her a scandishake every day, which is loaded with fat and calories. That way I don't have to worry that she prefers raisins or fruit over chips or cakes as a snack. Good Luck!

 

[anonymous]

Can you tell me what is a scandishake. We have a granddaughter 18 months w/CF and will be keeping her for a few weeks and would like to get her weight up

 

[Abby]

SCANDISHAKE is a powder you mix with whole milk. Once mixed, it contains approximately 600 calories and 20 grams of fat! It comes in chocolate, vanilla or strawberry. It can be purchased through Axcan Pharmacies. Just type scandishake in your search engine and it should come right up. They also have a program you can sign up for which gives it to you free with every Ultrase refill. It's worked wonders for my daughters weight.

 

[julie]

Also, things like boost/ensure shakes alone (but REALLY cold) or mixed in a blender with some ice cream gets those calories up there, which is SO important for CFers.

Lots of butter in the food, potatoes/YES even fries, Cottage cheese (my nephew's like cottage cheese and jelly, they take 1/2 of each and put it in their mouths-very similar to a store item already "pre-put together" but MUCH less expensive and very SWEET), Sour cream (on a baked potatoe or rice). Try cooking brow rice instead of white rice, it's got the complex carbohydrates and is much better for you.

For a young CFer given them whatever they will eat. Sure that's not the best way to go BUT you have to see what they like and as someone else said, elaborate on that.

For a young child, I am told the pediasure (NOT pedialyte) is pretty tasty. I've heard kids like it mixed with icecream to make a "McDonalds" like shake.

You can also get scandi cal (same company as scandi-shake) which you sprinkle onto/intoo cooked food to give extra calories. I acutally think I have a container of it (unopened) that I'd be happy to mail to someone. We can get it free with Marks Ultrase Rx.

Icecream is also a huge calorie container.

 

[anonymous]

We give DS carnation instant breakfast made with a cup of whole milk and an ounce of cream with his meals. Even adding hershey's syrup to milk adds a 100 calories. But so does cream. We add a splash of olive oil to his casseroles. His daycare adds butter to his meals.

He's not a big sweets eater -- prefers salt. Chips, crackers and pretzels. He's old enough to have honey now, so he likes dipping his crackers in honey.

I make him Peanut butter sandwiches with butter and honey.


Liza