Helping however i can

[srhschltz]

I'm new to the site. I dont have cf or have kids with cf. My nephew was diagnosed less then a year ago. he's almost 3. He's doing ok. as of 6 months ago he didnt have anything in his lungs. at his last appointment the docs told my sis that if he doesn't start gaining weight they'll have to put in a feeding tube. he's got the enzymes and all that, the problem is, he's a typical 3 year old and doesn't want to eat anything, at least not nearly enough. Anyway, i guess i have two questions. #1) does anybody know any tricks to get him to eat? and #2) to all you parents of cfers, how can i be helpful and supportive to my sis and brother in law?

 

[srhschltz]

I'm new to the site. I dont have cf or have kids with cf. My nephew was diagnosed less then a year ago. he's almost 3. He's doing ok. as of 6 months ago he didnt have anything in his lungs. at his last appointment the docs told my sis that if he doesn't start gaining weight they'll have to put in a feeding tube. he's got the enzymes and all that, the problem is, he's a typical 3 year old and doesn't want to eat anything, at least not nearly enough. Anyway, i guess i have two questions. #1) does anybody know any tricks to get him to eat? and #2) to all you parents of cfers, how can i be helpful and supportive to my sis and brother in law?

 

[srhschltz]

I'm new to the site. I dont have cf or have kids with cf. My nephew was diagnosed less then a year ago. he's almost 3. He's doing ok. as of 6 months ago he didnt have anything in his lungs. at his last appointment the docs told my sis that if he doesn't start gaining weight they'll have to put in a feeding tube. he's got the enzymes and all that, the problem is, he's a typical 3 year old and doesn't want to eat anything, at least not nearly enough. Anyway, i guess i have two questions. #1) does anybody know any tricks to get him to eat? and #2) to all you parents of cfers, how can i be helpful and supportive to my sis and brother in law?

 

[JazzysMom]

Since the amount he will eat is questionable, its best to get high calorie things into him. Of course a well balanced diet is best, but if he happens to enjoy baked potatoe with cheese, sour cream (for example) etc then let him have it for breakfast, lunch and dinner. I dont really advocate empty calories like candy, but treats like milkshakes is good since he needs calcium, vitamin A & D anyway. Another thought would be different calorie shakes. It can be anything from simple Carnation Instant Breakfast to Boost to Ensure. It does get expensive with the shakes so let them know there are programs thru some of the enzyme manufacturers. Basically what the "average" person shouldnt have is what a CFer should. Supporting them is important. Coming here for ideas is a great step. Being there to just listen or learn the treatments etc so they can feel confident with him in your care of they need some "couple" time.

 

[JazzysMom]

Since the amount he will eat is questionable, its best to get high calorie things into him. Of course a well balanced diet is best, but if he happens to enjoy baked potatoe with cheese, sour cream (for example) etc then let him have it for breakfast, lunch and dinner. I dont really advocate empty calories like candy, but treats like milkshakes is good since he needs calcium, vitamin A & D anyway. Another thought would be different calorie shakes. It can be anything from simple Carnation Instant Breakfast to Boost to Ensure. It does get expensive with the shakes so let them know there are programs thru some of the enzyme manufacturers. Basically what the "average" person shouldnt have is what a CFer should. Supporting them is important. Coming here for ideas is a great step. Being there to just listen or learn the treatments etc so they can feel confident with him in your care of they need some "couple" time.

 

[JazzysMom]

Since the amount he will eat is questionable, its best to get high calorie things into him. Of course a well balanced diet is best, but if he happens to enjoy baked potatoe with cheese, sour cream (for example) etc then let him have it for breakfast, lunch and dinner. I dont really advocate empty calories like candy, but treats like milkshakes is good since he needs calcium, vitamin A & D anyway. Another thought would be different calorie shakes. It can be anything from simple Carnation Instant Breakfast to Boost to Ensure. It does get expensive with the shakes so let them know there are programs thru some of the enzyme manufacturers. Basically what the "average" person shouldnt have is what a CFer should. Supporting them is important. Coming here for ideas is a great step. Being there to just listen or learn the treatments etc so they can feel confident with him in your care of they need some "couple" time.

 

[MYBOY]

I think it's great that you are asking how to help!! I think sometimes my family doesn't know/think that this is a serious disease (partly because he hasn't been that sick so far). I guess we don't talk about it alot - but my Mom would always call after appointments to see how things went - so that was nice.

Anyway my son has always gained weight pretty good - but he eats snickers for breakfast (never liked breakfast food or cereal) and usually chips or butter popcorn after school. So he does eat alot of high fat food - but I always figure something is better than nothing! He is picky but loves pizza, hot dogs, slim jims so that does help get the calories in!

 

[MYBOY]

I think it's great that you are asking how to help!! I think sometimes my family doesn't know/think that this is a serious disease (partly because he hasn't been that sick so far). I guess we don't talk about it alot - but my Mom would always call after appointments to see how things went - so that was nice.

Anyway my son has always gained weight pretty good - but he eats snickers for breakfast (never liked breakfast food or cereal) and usually chips or butter popcorn after school. So he does eat alot of high fat food - but I always figure something is better than nothing! He is picky but loves pizza, hot dogs, slim jims so that does help get the calories in!

 

[MYBOY]

I think it's great that you are asking how to help!! I think sometimes my family doesn't know/think that this is a serious disease (partly because he hasn't been that sick so far). I guess we don't talk about it alot - but my Mom would always call after appointments to see how things went - so that was nice.

Anyway my son has always gained weight pretty good - but he eats snickers for breakfast (never liked breakfast food or cereal) and usually chips or butter popcorn after school. So he does eat alot of high fat food - but I always figure something is better than nothing! He is picky but loves pizza, hot dogs, slim jims so that does help get the calories in!

 

[tammykrumrey]

I think it is great that you are being so supportive of your sister and brother in law. You remind me so much of myself about 15 years ago. My nephew was born with CF in 1991. My sister (she is younger than me-we have no other siblings) was crushed. I felt helpless. Back then we didn't have the internet connections that we have today to learn from. I threw myself into fund raiser for the CF Foundation, volunteering to help with different events. I am not saying that is what you should do, I am just saying I didn't know what else to do, and it seemed to be the right thing for me<img src="i/expressions/face-icon-small-smile.gif" border="0">

I wish I had a way to educate myself better back then regarding the disease. I did read the CF Patients and Family book, cover to cover, many times. And back then, he only saw his CF clinic once a year, so there simply wasn't a lot of information going back and forth regarding new issues. It was just different. Now, I talk with her all the time about it.

Unfortunately, I went on to have two of my own children, who both have CF. So, we have been very supportive of each other. She is a pediatric nurse now (a decision that she made when Dalton was born with CF---never had plans for that until then) and so that helps me with some technical things that I may not understand. My nephew really doesn't do well at all, and it is heartbreaking to see. My sister is very strong, and I have only seen her cry about Dalton a few times since his dx.

Just be there for her when she needs to vent. Be ready for hugs when she needs them. And if you choose, educate yourself. Even though my girls don't culture B. Cepacia, I am up to date on the info because my nephew does. I read a lot about transplants because he will probably be needing one in the somewhat near future, my girls are no where near needing that. But I like to be able to give her the positives that I learn, but still be able to understand the negatives that have her worried.

I rambled a lot. Sorry. But I do understand how you are trying to help her. Your sister is lucky to have you<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[tammykrumrey]

I think it is great that you are being so supportive of your sister and brother in law. You remind me so much of myself about 15 years ago. My nephew was born with CF in 1991. My sister (she is younger than me-we have no other siblings) was crushed. I felt helpless. Back then we didn't have the internet connections that we have today to learn from. I threw myself into fund raiser for the CF Foundation, volunteering to help with different events. I am not saying that is what you should do, I am just saying I didn't know what else to do, and it seemed to be the right thing for me<img src="i/expressions/face-icon-small-smile.gif" border="0">

I wish I had a way to educate myself better back then regarding the disease. I did read the CF Patients and Family book, cover to cover, many times. And back then, he only saw his CF clinic once a year, so there simply wasn't a lot of information going back and forth regarding new issues. It was just different. Now, I talk with her all the time about it.

Unfortunately, I went on to have two of my own children, who both have CF. So, we have been very supportive of each other. She is a pediatric nurse now (a decision that she made when Dalton was born with CF---never had plans for that until then) and so that helps me with some technical things that I may not understand. My nephew really doesn't do well at all, and it is heartbreaking to see. My sister is very strong, and I have only seen her cry about Dalton a few times since his dx.

Just be there for her when she needs to vent. Be ready for hugs when she needs them. And if you choose, educate yourself. Even though my girls don't culture B. Cepacia, I am up to date on the info because my nephew does. I read a lot about transplants because he will probably be needing one in the somewhat near future, my girls are no where near needing that. But I like to be able to give her the positives that I learn, but still be able to understand the negatives that have her worried.

I rambled a lot. Sorry. But I do understand how you are trying to help her. Your sister is lucky to have you<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[tammykrumrey]

I think it is great that you are being so supportive of your sister and brother in law. You remind me so much of myself about 15 years ago. My nephew was born with CF in 1991. My sister (she is younger than me-we have no other siblings) was crushed. I felt helpless. Back then we didn't have the internet connections that we have today to learn from. I threw myself into fund raiser for the CF Foundation, volunteering to help with different events. I am not saying that is what you should do, I am just saying I didn't know what else to do, and it seemed to be the right thing for me<img src="i/expressions/face-icon-small-smile.gif" border="0">

I wish I had a way to educate myself better back then regarding the disease. I did read the CF Patients and Family book, cover to cover, many times. And back then, he only saw his CF clinic once a year, so there simply wasn't a lot of information going back and forth regarding new issues. It was just different. Now, I talk with her all the time about it.

Unfortunately, I went on to have two of my own children, who both have CF. So, we have been very supportive of each other. She is a pediatric nurse now (a decision that she made when Dalton was born with CF---never had plans for that until then) and so that helps me with some technical things that I may not understand. My nephew really doesn't do well at all, and it is heartbreaking to see. My sister is very strong, and I have only seen her cry about Dalton a few times since his dx.

Just be there for her when she needs to vent. Be ready for hugs when she needs them. And if you choose, educate yourself. Even though my girls don't culture B. Cepacia, I am up to date on the info because my nephew does. I read a lot about transplants because he will probably be needing one in the somewhat near future, my girls are no where near needing that. But I like to be able to give her the positives that I learn, but still be able to understand the negatives that have her worried.

I rambled a lot. Sorry. But I do understand how you are trying to help her. Your sister is lucky to have you<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Samsmom]

First let me say "thank you" for being such a concerned sister and aunt. Family support is so important and it is wonderful that you have taken the step coming here to find info. show your sister and brother in law this site first. They can find so much support and info. here. Educate yourself about the disease, maybe even offer to go to a clinic visit with your nephew to learn more. Leaving an ill child with a caregiver that does not know how to handle the illness is sometimes disaterous, so if you know how to care for your nephew then you could be a great sitter so they can have couple time. Caring for an ill child leaves little time to nurtrure a marriage, and they can fall apart. Be there when they need to talk and understand when they don't want to talk. Remind them that you are there for them. If they have other children you could spend some time with them if they are feeling neglected. You will find the things they need if you watch closley and being so caring as you seem to be I'm sure your support will always be charished. As for the eating, good luck. I'm fighting that one right now myself witha 13 yr. old. Hugs and best wishes.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Samsmom]

First let me say "thank you" for being such a concerned sister and aunt. Family support is so important and it is wonderful that you have taken the step coming here to find info. show your sister and brother in law this site first. They can find so much support and info. here. Educate yourself about the disease, maybe even offer to go to a clinic visit with your nephew to learn more. Leaving an ill child with a caregiver that does not know how to handle the illness is sometimes disaterous, so if you know how to care for your nephew then you could be a great sitter so they can have couple time. Caring for an ill child leaves little time to nurtrure a marriage, and they can fall apart. Be there when they need to talk and understand when they don't want to talk. Remind them that you are there for them. If they have other children you could spend some time with them if they are feeling neglected. You will find the things they need if you watch closley and being so caring as you seem to be I'm sure your support will always be charished. As for the eating, good luck. I'm fighting that one right now myself witha 13 yr. old. Hugs and best wishes.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Samsmom]

First let me say "thank you" for being such a concerned sister and aunt. Family support is so important and it is wonderful that you have taken the step coming here to find info. show your sister and brother in law this site first. They can find so much support and info. here. Educate yourself about the disease, maybe even offer to go to a clinic visit with your nephew to learn more. Leaving an ill child with a caregiver that does not know how to handle the illness is sometimes disaterous, so if you know how to care for your nephew then you could be a great sitter so they can have couple time. Caring for an ill child leaves little time to nurtrure a marriage, and they can fall apart. Be there when they need to talk and understand when they don't want to talk. Remind them that you are there for them. If they have other children you could spend some time with them if they are feeling neglected. You will find the things they need if you watch closley and being so caring as you seem to be I'm sure your support will always be charished. As for the eating, good luck. I'm fighting that one right now myself witha 13 yr. old. Hugs and best wishes.<img src="i/expressions/face-icon-small-smile.gif" border="0">