weight issues

M

My3wsonsljj

New member
Hello, I am a mother of twins with cf. They are 8 yrs old and they weigh 44 lbs. We just had our clinic visit and our dr is still suggesting a gtube for the boys. I wanted to know if there is anyone our there that has had weight gain with one. We have tried everything to put weight on them. I feel like I am at the end with this. I am so tired of trying to add fat to everything and making sure they eat everything on their plate. Making sure they always have a snack. I think I am just tired and stressed. I was wondering also what everyones routines are like with their cf child. Ex. what meds through the day, how many treatments, vest to manual cpt, what types of breathing meds, neb meds or inhalers. Sometimes I just feel like we are not doing what everyone else does and I just wanted to find out what your cf schedule is like. Our boys do two treatments per day(vest) with a neb of pulmozyme. They do TOBI 30 days on and 30 days off(a neb treatment), they have inhalers for their albuterol and flovent, they take 3 ultrase mt 12 with meals and 2 with snacks, vitamins adek and a weight gain med called magaze(spelling?) and one takes a med for irritial bowel, he has a lot more stomach issues than the other. I know that is enough. Lord knows sometimes I don't know how we get it all in. I was just wondering what everyone else went through in a day. If you have any weight gain suggestions I would love to hear it. I am usually so upbeat with their cf because they are pretty healthy.(As healthy as you can be with CF) but, I have been so depressed with all this lately. I know everyone here knows what that is like. Any help would be great

Mom to 3 sons
twins with cf
single with out cf
 
M

My3wsonsljj

New member
Hello, I am a mother of twins with cf. They are 8 yrs old and they weigh 44 lbs. We just had our clinic visit and our dr is still suggesting a gtube for the boys. I wanted to know if there is anyone our there that has had weight gain with one. We have tried everything to put weight on them. I feel like I am at the end with this. I am so tired of trying to add fat to everything and making sure they eat everything on their plate. Making sure they always have a snack. I think I am just tired and stressed. I was wondering also what everyones routines are like with their cf child. Ex. what meds through the day, how many treatments, vest to manual cpt, what types of breathing meds, neb meds or inhalers. Sometimes I just feel like we are not doing what everyone else does and I just wanted to find out what your cf schedule is like. Our boys do two treatments per day(vest) with a neb of pulmozyme. They do TOBI 30 days on and 30 days off(a neb treatment), they have inhalers for their albuterol and flovent, they take 3 ultrase mt 12 with meals and 2 with snacks, vitamins adek and a weight gain med called magaze(spelling?) and one takes a med for irritial bowel, he has a lot more stomach issues than the other. I know that is enough. Lord knows sometimes I don't know how we get it all in. I was just wondering what everyone else went through in a day. If you have any weight gain suggestions I would love to hear it. I am usually so upbeat with their cf because they are pretty healthy.(As healthy as you can be with CF) but, I have been so depressed with all this lately. I know everyone here knows what that is like. Any help would be great

Mom to 3 sons
twins with cf
single with out cf
 
M

MOME2RT

New member
Have you tried scandishakes? Reece is on the low end of the spectrum for weight gain also. The clinic keeps giving me this but Reece does NOT like it at all. I feel like you, I have tried EVERYTHING under the sun,what else am I suppose to do? I cant make him eat. He has been 30 lbs for the past year in a 1/2.
Leah mommy 2 Reece 3yrs old w/ CF
 
M

MOME2RT

New member
Have you tried scandishakes? Reece is on the low end of the spectrum for weight gain also. The clinic keeps giving me this but Reece does NOT like it at all. I feel like you, I have tried EVERYTHING under the sun,what else am I suppose to do? I cant make him eat. He has been 30 lbs for the past year in a 1/2.
Leah mommy 2 Reece 3yrs old w/ CF
 
E

Emily65Roses

New member
If you want to try weight shakes that *don't* taste like garbage... I would recommend Instant Breakfast with whole milk. Those actually taste good, and have a decent amount of nutrients in them.
 
E

Emily65Roses

New member
If you want to try weight shakes that *don't* taste like garbage... I would recommend Instant Breakfast with whole milk. Those actually taste good, and have a decent amount of nutrients in them.
 
T

thelizardqueen

New member
Scandishakes work and are really good. I could never stomach boost, ensure or any of the other weight gain drinks, but Scandi is really good, and I find it helps me put weight on. I usually have 2 a day along with my meals. Or you could try shakes. One really good recipe I use that puts on weight like mad is 1 packet of scandishake, 1 cup milk, 3 tablespoons of yogurt and 2 tablespoons of peanut butter, mix it all up in a blender. Very good stuff.
 
T

thelizardqueen

New member
Scandishakes work and are really good. I could never stomach boost, ensure or any of the other weight gain drinks, but Scandi is really good, and I find it helps me put weight on. I usually have 2 a day along with my meals. Or you could try shakes. One really good recipe I use that puts on weight like mad is 1 packet of scandishake, 1 cup milk, 3 tablespoons of yogurt and 2 tablespoons of peanut butter, mix it all up in a blender. Very good stuff.
 
A

anonymous

New member
I don't know if they do this anymore or not but I was 40 lbs also when I was 8, so they put me on a Prednisone regimine for a while (steroids) I put on a ton of weight and I felt good. There are side effects for the steroids but I still think it was worth it for me, I have never been sorry I did it. I also drank instant breakfast with whole milk and I ate at least one candy bar a day <img src="i/expressions/face-icon-small-smile.gif" border="0"> By the time I was 10 I weighed 85lbs.
 
A

anonymous

New member
I don't know if they do this anymore or not but I was 40 lbs also when I was 8, so they put me on a Prednisone regimine for a while (steroids) I put on a ton of weight and I felt good. There are side effects for the steroids but I still think it was worth it for me, I have never been sorry I did it. I also drank instant breakfast with whole milk and I ate at least one candy bar a day <img src="i/expressions/face-icon-small-smile.gif" border="0"> By the time I was 10 I weighed 85lbs.
 
T

thefrogprincess

New member
A g tube is not a decision to take lightly of course but can be a huge stress reliever to you an the family. My brother had his done when I was in 5th grade and it was great! Once he recovered from surgery and got into the routine he put on weight like lightning, for the first time I could remmeber he didn't look like a war orphan! He was healthier overall and for the first time in his entire life made it to the normal range for height and weight for his age. And my parents didn't have to fight him to eat constantly which made life at home a lot better for everone.
 
T

thefrogprincess

New member
A g tube is not a decision to take lightly of course but can be a huge stress reliever to you an the family. My brother had his done when I was in 5th grade and it was great! Once he recovered from surgery and got into the routine he put on weight like lightning, for the first time I could remmeber he didn't look like a war orphan! He was healthier overall and for the first time in his entire life made it to the normal range for height and weight for his age. And my parents didn't have to fight him to eat constantly which made life at home a lot better for everone.
 
M

MOME2RT

New member
Another thing I noticed w/ the scandi is it doesnt desolve well. How have some of you got this stuff to desolve? Our nutreintionts said to let it sit for awhile but that hasnt worked yet & who wants warm milk..yuk!!! Any ideas?
Leah
 
M

MOME2RT

New member
Another thing I noticed w/ the scandi is it doesnt desolve well. How have some of you got this stuff to desolve? Our nutreintionts said to let it sit for awhile but that hasnt worked yet & who wants warm milk..yuk!!! Any ideas?
Leah
 
A

anonymous

New member
My daughter is 3 with CF and we are always trying to fatten her up. She is doing better gaining weight now but last summer she was VERY thin. She was also sick at the time, coughing all the time so I'm sure that had alot to do with it. A couple things that have helped up were changing her to Pancreacarb MS enzyme(she had taken Creon for the first 2+ years of her life). Switching to this particular enzyme helped her although everyone is different. She also takes Zantac 2x a day to help her enzymes work better. We recently tried Boost Plus(it has 360 calories per 8 oz) I call it chocolate milk and she's been drinking one a night with dinner. We have given her ice-cream(high fat) before bed, that way she can't burn off those calories. There is also a powder,Scandical makes it, it has 35 cal per tablespoon it is tasteless and you can mix it with juice/milk to sneak in some calories. We go through phases, sometimes she'll want to eat the same thing for lunch every day, and that's ok. We do mac and cheese(from a box) with butter and whole milk. Peanut butter, nutella spread.Whole milk. Chicken nuggets. Lots of red meat, fish with olive oil.
I've felt the same way as you so you are not alone. Usually I'm all about keeping Maggie healthy but every once in a while I get bummed. Then Maggie will do something so funny, just being her 3 year old crazy self and she just puts such a smile on my face.

Rebecca(mom to sammy 7 no CF and MAggie3 with CF)
 
A

anonymous

New member
My daughter is 3 with CF and we are always trying to fatten her up. She is doing better gaining weight now but last summer she was VERY thin. She was also sick at the time, coughing all the time so I'm sure that had alot to do with it. A couple things that have helped up were changing her to Pancreacarb MS enzyme(she had taken Creon for the first 2+ years of her life). Switching to this particular enzyme helped her although everyone is different. She also takes Zantac 2x a day to help her enzymes work better. We recently tried Boost Plus(it has 360 calories per 8 oz) I call it chocolate milk and she's been drinking one a night with dinner. We have given her ice-cream(high fat) before bed, that way she can't burn off those calories. There is also a powder,Scandical makes it, it has 35 cal per tablespoon it is tasteless and you can mix it with juice/milk to sneak in some calories. We go through phases, sometimes she'll want to eat the same thing for lunch every day, and that's ok. We do mac and cheese(from a box) with butter and whole milk. Peanut butter, nutella spread.Whole milk. Chicken nuggets. Lots of red meat, fish with olive oil.
I've felt the same way as you so you are not alone. Usually I'm all about keeping Maggie healthy but every once in a while I get bummed. Then Maggie will do something so funny, just being her 3 year old crazy self and she just puts such a smile on my face.

Rebecca(mom to sammy 7 no CF and MAggie3 with CF)
 
A

anonymous

New member
If they like milk shakes, we make high calorie milk shakes with the most fattening ice cream we can find, a packet of carnation instant breakfast, whole milk, and chocolate syrup. Or, for fruity flavored ones, we mix high calorie vanilla ice cream, whole milk, strawberry or vanilla carnation instant breakfast and fruit (banana, strawberries, etc.) It's slightly time consuming (5 min or so in the blender vs. popping open a can) but our ds sees it as a "treat" (he loves ice cream) and it tastes good! Of course, that assumes they don't have problems with milk. I have IBS (no cf though) and do have lots of issue with dairy so I couldn't drink these shakes. Oh, also you can add peanut butter and make a chocolate peanut butter shake for extra calories/protein.
 
A

anonymous

New member
If they like milk shakes, we make high calorie milk shakes with the most fattening ice cream we can find, a packet of carnation instant breakfast, whole milk, and chocolate syrup. Or, for fruity flavored ones, we mix high calorie vanilla ice cream, whole milk, strawberry or vanilla carnation instant breakfast and fruit (banana, strawberries, etc.) It's slightly time consuming (5 min or so in the blender vs. popping open a can) but our ds sees it as a "treat" (he loves ice cream) and it tastes good! Of course, that assumes they don't have problems with milk. I have IBS (no cf though) and do have lots of issue with dairy so I couldn't drink these shakes. Oh, also you can add peanut butter and make a chocolate peanut butter shake for extra calories/protein.
 
You must log in or register to reply here.
Top