When (and how) you tell to your kids they have CF?

C

Chilemom

New member
hy,... long time without writing, but always reading all the good topics that here are.
my daughter is four and a half, i think that she is starting to realized that not all kids take creon, or do cpt every day, and all the cf issues.
in my house we speak about Cf in an open way, but i think is time to sit down with her and explain her whats is going on.
how was your experience with your kids? what do you think : when is the right moment, and howis the right moment?

Fran
 
C

Chilemom

New member
hy,... long time without writing, but always reading all the good topics that here are.
my daughter is four and a half, i think that she is starting to realized that not all kids take creon, or do cpt every day, and all the cf issues.
in my house we speak about Cf in an open way, but i think is time to sit down with her and explain her whats is going on.
how was your experience with your kids? what do you think : when is the right moment, and howis the right moment?

Fran
 
C

Chilemom

New member
hy,... long time without writing, but always reading all the good topics that here are.
<br />my daughter is four and a half, i think that she is starting to realized that not all kids take creon, or do cpt every day, and all the cf issues.
<br />in my house we speak about Cf in an open way, but i think is time to sit down with her and explain her whats is going on.
<br />how was your experience with your kids? what do you think : when is the right moment, and howis the right moment?
<br />
<br />Fran
 
W

welshwitch

Guest
Well I have CF myself, but this video is awesome and fun and positive.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=WuI72eMrIQI
">http://www.youtube.com/watch?v=WuI72eMrIQI
</a>
Here's why I like it: It talks about CF, what it is, why you have it, what you have to do to stay healthy, and it is great for kids and presents CF in a positive, non-depressing manner.

I wish there had been a video like this when i was young!
 
W

welshwitch

Guest
Well I have CF myself, but this video is awesome and fun and positive.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=WuI72eMrIQI
">http://www.youtube.com/watch?v=WuI72eMrIQI
</a>
Here's why I like it: It talks about CF, what it is, why you have it, what you have to do to stay healthy, and it is great for kids and presents CF in a positive, non-depressing manner.

I wish there had been a video like this when i was young!
 
W

welshwitch

Guest
Well I have CF myself, but this video is awesome and fun and positive.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=WuI72eMrIQI
">http://www.youtube.com/watch?v=WuI72eMrIQI
</a><br />
<br />Here's why I like it: It talks about CF, what it is, why you have it, what you have to do to stay healthy, and it is great for kids and presents CF in a positive, non-depressing manner.
<br />
<br />I wish there had been a video like this when i was young!
 
M

Mommafirst

Guest
We've never had the sit down serious conversation, but we have had dozens of short appropriate conversations regarding CF that have been sparred on by my daughter's questions and I just follow her cues. When she shows disinterest or changes the subject, we move on. When she shows interest, curiosity or emotions , I adress the issues at hand.

Alyssa knows that her brothers don't have CF and that she does. She knows the names of her meds (sorta) and what they do. She knows how to stay healthy and when its time to bring in more meds or the doctor. She knows that her CF will make some issues for school next year -- but not negative ways.

Good luck. Just take the cues and be honest but not age inappropriate. Give her what she needs to know, but not what you need her to know.

For whatever its worth, this has been my approach for sex education with my kids as well. Its never been a "sit down I have to tell you" moment, just an ongoing conversation where the kids can ask questions and know that they'll get honest, age appropriate answers and not get MORE than they need, but not get less either.
 
M

Mommafirst

Guest
We've never had the sit down serious conversation, but we have had dozens of short appropriate conversations regarding CF that have been sparred on by my daughter's questions and I just follow her cues. When she shows disinterest or changes the subject, we move on. When she shows interest, curiosity or emotions , I adress the issues at hand.

Alyssa knows that her brothers don't have CF and that she does. She knows the names of her meds (sorta) and what they do. She knows how to stay healthy and when its time to bring in more meds or the doctor. She knows that her CF will make some issues for school next year -- but not negative ways.

Good luck. Just take the cues and be honest but not age inappropriate. Give her what she needs to know, but not what you need her to know.

For whatever its worth, this has been my approach for sex education with my kids as well. Its never been a "sit down I have to tell you" moment, just an ongoing conversation where the kids can ask questions and know that they'll get honest, age appropriate answers and not get MORE than they need, but not get less either.
 
M

Mommafirst

Guest
We've never had the sit down serious conversation, but we have had dozens of short appropriate conversations regarding CF that have been sparred on by my daughter's questions and I just follow her cues. When she shows disinterest or changes the subject, we move on. When she shows interest, curiosity or emotions , I adress the issues at hand.
<br />
<br />Alyssa knows that her brothers don't have CF and that she does. She knows the names of her meds (sorta) and what they do. She knows how to stay healthy and when its time to bring in more meds or the doctor. She knows that her CF will make some issues for school next year -- but not negative ways.
<br />
<br />Good luck. Just take the cues and be honest but not age inappropriate. Give her what she needs to know, but not what you need her to know.
<br />
<br />For whatever its worth, this has been my approach for sex education with my kids as well. Its never been a "sit down I have to tell you" moment, just an ongoing conversation where the kids can ask questions and know that they'll get honest, age appropriate answers and not get MORE than they need, but not get less either.
 
M

mamaScarlett

Active member
When (and how) you tell to your kids they have Cf

I too have Cf, so I'm not on the mom/caregiver side of cf, but I am a mom myself.
I don't ever remember a time when I didn't know I had Cf or how serious it was. I think if my mother had sat me down for one serious talk it could have been detrimental to me, rather it was a continuous open discussion in our family.
My mom was also very frank about the consequences of me not doing my treatments.
Young kids just can't understand certain things the way that an adult can rationalize them. You can be open and honest, but tailor things specifically for their age. At this age its not neccesary for a child to hear the worse case scenario, or to think that they could be disabled (or worse) at some point-especially when 10 years from now Cf could be a completely different story than it is now!! But you can tell her why her body is different, and how she has to do her treatments so she and the family can be healthy and do the fun things they like to do.
As far as her being different than the other kids-needing to take enzymes, etc...She probably already knows that. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I don't think I had a BIG talk with my doctors or parent regarding how Cf would/could impact my adult life and my decisions until I was in my mid teens. Meaning, I always knew how serious Cf was, but it wasn't until my mid teens that I realized that I might not be able to have kids, or have certain jobs. (and fortunately I do have kids and have had several jobs that I love, so there. <img src="i/expressions/face-icon-small-wink.gif" border="0"> )
 
M

mamaScarlett

Active member
When (and how) you tell to your kids they have Cf

I too have Cf, so I'm not on the mom/caregiver side of cf, but I am a mom myself.
I don't ever remember a time when I didn't know I had Cf or how serious it was. I think if my mother had sat me down for one serious talk it could have been detrimental to me, rather it was a continuous open discussion in our family.
My mom was also very frank about the consequences of me not doing my treatments.
Young kids just can't understand certain things the way that an adult can rationalize them. You can be open and honest, but tailor things specifically for their age. At this age its not neccesary for a child to hear the worse case scenario, or to think that they could be disabled (or worse) at some point-especially when 10 years from now Cf could be a completely different story than it is now!! But you can tell her why her body is different, and how she has to do her treatments so she and the family can be healthy and do the fun things they like to do.
As far as her being different than the other kids-needing to take enzymes, etc...She probably already knows that. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I don't think I had a BIG talk with my doctors or parent regarding how Cf would/could impact my adult life and my decisions until I was in my mid teens. Meaning, I always knew how serious Cf was, but it wasn't until my mid teens that I realized that I might not be able to have kids, or have certain jobs. (and fortunately I do have kids and have had several jobs that I love, so there. <img src="i/expressions/face-icon-small-wink.gif" border="0"> )
 
M

mamaScarlett

Active member
When (and how) you tell to your kids they have Cf

I too have Cf, so I'm not on the mom/caregiver side of cf, but I am a mom myself.
<br />I don't ever remember a time when I didn't know I had Cf or how serious it was. I think if my mother had sat me down for one serious talk it could have been detrimental to me, rather it was a continuous open discussion in our family.
<br />My mom was also very frank about the consequences of me not doing my treatments.
<br />Young kids just can't understand certain things the way that an adult can rationalize them. You can be open and honest, but tailor things specifically for their age. At this age its not neccesary for a child to hear the worse case scenario, or to think that they could be disabled (or worse) at some point-especially when 10 years from now Cf could be a completely different story than it is now!! But you can tell her why her body is different, and how she has to do her treatments so she and the family can be healthy and do the fun things they like to do.
<br />As far as her being different than the other kids-needing to take enzymes, etc...She probably already knows that. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />I don't think I had a BIG talk with my doctors or parent regarding how Cf would/could impact my adult life and my decisions until I was in my mid teens. Meaning, I always knew how serious Cf was, but it wasn't until my mid teens that I realized that I might not be able to have kids, or have certain jobs. (and fortunately I do have kids and have had several jobs that I love, so there. <img src="i/expressions/face-icon-small-wink.gif" border="0"> )
<br />
<br />
 
R

Ratatosk

Administrator
Staff member
When (and how) you tell to your kids they have Cf

Never had a big conversation either with DS. He knows he has CF -- he's taken enzymes at daycare since he was a baby and knows it's because of cf and to help digest his food. He knows he has to do his vest and nebs to keep his lung happy and healthy.

We do ask from time to time if he has questions or if he wants us to explain anything.
 
R

Ratatosk

Administrator
Staff member
When (and how) you tell to your kids they have Cf

Never had a big conversation either with DS. He knows he has CF -- he's taken enzymes at daycare since he was a baby and knows it's because of cf and to help digest his food. He knows he has to do his vest and nebs to keep his lung happy and healthy.

We do ask from time to time if he has questions or if he wants us to explain anything.
 
R

Ratatosk

Administrator
Staff member
When (and how) you tell to your kids they have Cf

Never had a big conversation either with DS. He knows he has CF -- he's taken enzymes at daycare since he was a baby and knows it's because of cf and to help digest his food. He knows he has to do his vest and nebs to keep his lung happy and healthy.
<br />
<br />We do ask from time to time if he has questions or if he wants us to explain anything.
<br />
<br />
 
R

Rebjane

Super Moderator
Hi Fran,

My daughter is 8 with CF, we have not had a sit down either..As things come up we answer questions. SHe can administer her own enzymes; she knows the importance of her nebs and VEST and while she has moments of hating having CF these things need to be done like brushing her teeth so she can go about her day to keep her lungs healthy.

SHe loved watching the link of Nosh and Ollie. She loved the nebulizer machine and seeing she is not the only one.

My daughter also knows there are worse things to have.

I like to validate her feelings...When she says I hate having CF I will agree with her that CF does suck..But Our family is here to help stay well so she can enjoy the life that has been given to her. I also always let her know how strong she is and how proud I am of her.
 
R

Rebjane

Super Moderator
Hi Fran,

My daughter is 8 with CF, we have not had a sit down either..As things come up we answer questions. SHe can administer her own enzymes; she knows the importance of her nebs and VEST and while she has moments of hating having CF these things need to be done like brushing her teeth so she can go about her day to keep her lungs healthy.

SHe loved watching the link of Nosh and Ollie. She loved the nebulizer machine and seeing she is not the only one.

My daughter also knows there are worse things to have.

I like to validate her feelings...When she says I hate having CF I will agree with her that CF does suck..But Our family is here to help stay well so she can enjoy the life that has been given to her. I also always let her know how strong she is and how proud I am of her.
 
R

Rebjane

Super Moderator
Hi Fran,
<br />
<br />My daughter is 8 with CF, we have not had a sit down either..As things come up we answer questions. SHe can administer her own enzymes; she knows the importance of her nebs and VEST and while she has moments of hating having CF these things need to be done like brushing her teeth so she can go about her day to keep her lungs healthy.
<br />
<br />SHe loved watching the link of Nosh and Ollie. She loved the nebulizer machine and seeing she is not the only one.
<br />
<br />My daughter also knows there are worse things to have.
<br />
<br />I like to validate her feelings...When she says I hate having CF I will agree with her that CF does suck..But Our family is here to help stay well so she can enjoy the life that has been given to her. I also always let her know how strong she is and how proud I am of her.
 
R

Rebjane

Super Moderator
Heather,

For me the answers I have to provide to the kids about CF have been easier for me than providing answers for sex question<img src="i/expressions/face-icon-small-wink.gif" border="0">
 
R

Rebjane

Super Moderator
Heather,

For me the answers I have to provide to the kids about CF have been easier for me than providing answers for sex question<img src="i/expressions/face-icon-small-wink.gif" border="0">
 
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