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When (and how) you tell to your kids they have CF?
- Thread starter Chilemom
- Start date
M
Mommafirst
Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rebjane</b></i>
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=""></end quote></div>
Thus far, I agree wholeheartedly. I know there will be some hard CF questions someday. But I figure if I'm open and honest (and age appropriate) now, she'll trust my answers later.
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=""></end quote></div>
Thus far, I agree wholeheartedly. I know there will be some hard CF questions someday. But I figure if I'm open and honest (and age appropriate) now, she'll trust my answers later.
M
Mommafirst
Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rebjane</b></i>
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=""></end quote>
Thus far, I agree wholeheartedly. I know there will be some hard CF questions someday. But I figure if I'm open and honest (and age appropriate) now, she'll trust my answers later.
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=""></end quote>
Thus far, I agree wholeheartedly. I know there will be some hard CF questions someday. But I figure if I'm open and honest (and age appropriate) now, she'll trust my answers later.
M
Mommafirst
Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rebjane</b></i>
<br />
<br />Heather,
<br />
<br />
<br />
<br />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=""></end quote>
<br />
<br />
<br />Thus far, I agree wholeheartedly. I know there will be some hard CF questions someday. But I figure if I'm open and honest (and age appropriate) now, she'll trust my answers later.
<br />
<br />
<br />Heather,
<br />
<br />
<br />
<br />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=""></end quote>
<br />
<br />
<br />Thus far, I agree wholeheartedly. I know there will be some hard CF questions someday. But I figure if I'm open and honest (and age appropriate) now, she'll trust my answers later.
<br />
Hey!
I would agree with a lot of the people here in that it's not necessary to make it an official "cf conversation". That could make too much of an issue in your daughter's head. You said you already are open in the house about it? So maybe just start adding bits of information when it naturally comes up. Like when you're getting her neb ready just talk about what it is, what it will do and how its special for her- all in an age apt way!
When I was 4 the only thing I had to take was enzymes- but I was hyper aware of the fact that I was the only one taking tablets. This bugged the crap out of me and I tried my best to always hide them!
I would agree with a lot of the people here in that it's not necessary to make it an official "cf conversation". That could make too much of an issue in your daughter's head. You said you already are open in the house about it? So maybe just start adding bits of information when it naturally comes up. Like when you're getting her neb ready just talk about what it is, what it will do and how its special for her- all in an age apt way!
When I was 4 the only thing I had to take was enzymes- but I was hyper aware of the fact that I was the only one taking tablets. This bugged the crap out of me and I tried my best to always hide them!
Hey!
I would agree with a lot of the people here in that it's not necessary to make it an official "cf conversation". That could make too much of an issue in your daughter's head. You said you already are open in the house about it? So maybe just start adding bits of information when it naturally comes up. Like when you're getting her neb ready just talk about what it is, what it will do and how its special for her- all in an age apt way!
When I was 4 the only thing I had to take was enzymes- but I was hyper aware of the fact that I was the only one taking tablets. This bugged the crap out of me and I tried my best to always hide them!
I would agree with a lot of the people here in that it's not necessary to make it an official "cf conversation". That could make too much of an issue in your daughter's head. You said you already are open in the house about it? So maybe just start adding bits of information when it naturally comes up. Like when you're getting her neb ready just talk about what it is, what it will do and how its special for her- all in an age apt way!
When I was 4 the only thing I had to take was enzymes- but I was hyper aware of the fact that I was the only one taking tablets. This bugged the crap out of me and I tried my best to always hide them!
Hey!
<br />
<br />I would agree with a lot of the people here in that it's not necessary to make it an official "cf conversation". That could make too much of an issue in your daughter's head. You said you already are open in the house about it? So maybe just start adding bits of information when it naturally comes up. Like when you're getting her neb ready just talk about what it is, what it will do and how its special for her- all in an age apt way!
<br />
<br />When I was 4 the only thing I had to take was enzymes- but I was hyper aware of the fact that I was the only one taking tablets. This bugged the crap out of me and I tried my best to always hide them!
<br />
<br />I would agree with a lot of the people here in that it's not necessary to make it an official "cf conversation". That could make too much of an issue in your daughter's head. You said you already are open in the house about it? So maybe just start adding bits of information when it naturally comes up. Like when you're getting her neb ready just talk about what it is, what it will do and how its special for her- all in an age apt way!
<br />
<br />When I was 4 the only thing I had to take was enzymes- but I was hyper aware of the fact that I was the only one taking tablets. This bugged the crap out of me and I tried my best to always hide them!
DD is 5 and we never had a "serious talk" about CF. She knows she has to do special things in order to stay healthy and she has said -"I like to be special". She knows she has CF and at this age I don't think they need a "serious talk" that might scare them more and make them more concious about it. When she does nebs we explain what they do for her. When she takes enzymes we do the same. IMO
DD is 5 and we never had a "serious talk" about CF. She knows she has to do special things in order to stay healthy and she has said -"I like to be special". She knows she has CF and at this age I don't think they need a "serious talk" that might scare them more and make them more concious about it. When she does nebs we explain what they do for her. When she takes enzymes we do the same. IMO
DD is 5 and we never had a "serious talk" about CF. She knows she has to do special things in order to stay healthy and she has said -"I like to be special". She knows she has CF and at this age I don't think they need a "serious talk" that might scare them more and make them more concious about it. When she does nebs we explain what they do for her. When she takes enzymes we do the same. IMO
wow!!!!! from reading everyones post i feel worse then i already did. so many of u have a child the same age or at least a year younger or older then Aidan. hes 5 and doesnt know he has cf. when hes asked me why he has to take enzymes i tell him so he doesnt get a belly ache. ive told hime he has to do nebs inhalers chest pt cayston picc lines to keep his lungs healthy and keep out bad germs inside of them. my hubby and i say cf all the time its said in clinic visits i answer friends and family questions in front of him and i just figured one day hes going to ask me what cf is? and thats when i shuld tell him he has it. is it wrong to wait to tell or shuld he knw now?
------------------------------------------------
Elizabeth
mama to Aidan 5 w/cf
------------------------------------------------
Elizabeth
mama to Aidan 5 w/cf
wow!!!!! from reading everyones post i feel worse then i already did. so many of u have a child the same age or at least a year younger or older then Aidan. hes 5 and doesnt know he has cf. when hes asked me why he has to take enzymes i tell him so he doesnt get a belly ache. ive told hime he has to do nebs inhalers chest pt cayston picc lines to keep his lungs healthy and keep out bad germs inside of them. my hubby and i say cf all the time its said in clinic visits i answer friends and family questions in front of him and i just figured one day hes going to ask me what cf is? and thats when i shuld tell him he has it. is it wrong to wait to tell or shuld he knw now?
------------------------------------------------
Elizabeth
mama to Aidan 5 w/cf
------------------------------------------------
Elizabeth
mama to Aidan 5 w/cf
wow!!!!! from reading everyones post i feel worse then i already did. so many of u have a child the same age or at least a year younger or older then Aidan. hes 5 and doesnt know he has cf. when hes asked me why he has to take enzymes i tell him so he doesnt get a belly ache. ive told hime he has to do nebs inhalers chest pt cayston picc lines to keep his lungs healthy and keep out bad germs inside of them. my hubby and i say cf all the time its said in clinic visits i answer friends and family questions in front of him and i just figured one day hes going to ask me what cf is? and thats when i shuld tell him he has it. is it wrong to wait to tell or shuld he knw now?
<br />------------------------------------------------
<br />Elizabeth
<br />mama to Aidan 5 w/cf
<br />------------------------------------------------
<br />Elizabeth
<br />mama to Aidan 5 w/cf
Elizabeth, yes, he should know- because eventually he WILL be told by someone else and it will cause confusion and hurt on his part and wonder why he wasn't told by the people he loves and trusts the most.
You may want to simply start by asking him 'have you ever heard us say 'CF' at the dr's office or when talking to other people, or the words 'cystic fibrosis'? Do you know what it means? Since he already knows he needs to keep from getting belly aches and to keep his lungs healthy, it will probably be easier than you think to explain it to him. Just telling him that the REASON he has to do those things (and no one else in the family or among his friends do) is because he has something called cystic fibrosis or 'CF', and he even has special drs that completely specialize in that to keep kids that have it as healthy as possible.
Odds are this is going to be a relief to him. Kids hear more than we think they do, and he's likely heard this term, picked up on your concern when he's gotten sick, etc and wondered about it. And it will certainly be easier for you just to have it out in the open. It's an important thing to just be open and as things come up, answer them. I agree it's not necessary to have a 'big talk' but just answering questions as they arise and explaining new treatments as they are introduced and why they are being done, is likely to be best.
In response to the thread in general...
In our case, we had to have 'the talk' initially because Emily wasn't dx'ed until she was 7.5yrs old (developmentally about 5 due to learning disabilities.) But it didn't even occur to me, frankly, NOT to tell her. She was going to hear us talking about it and she had to go to the doctor and we had to talk to the teachers etc... there was NO way we could hide it from her and yet still introduce the treatments. It was not too bad. In the 2.5yrs since then we have explained new things as they have arisen. It's been tough emotionally of late, since she has reached a greater understanding of the 'chronic' nature of her disease and has had a harder time coping. She was told by a friend at school she was going to die of her CF. The HARD issues are cropping up and those are harder to address than 'why do I have to do these nebs.' She's seeing the CF social worker right now to help...
You may want to simply start by asking him 'have you ever heard us say 'CF' at the dr's office or when talking to other people, or the words 'cystic fibrosis'? Do you know what it means? Since he already knows he needs to keep from getting belly aches and to keep his lungs healthy, it will probably be easier than you think to explain it to him. Just telling him that the REASON he has to do those things (and no one else in the family or among his friends do) is because he has something called cystic fibrosis or 'CF', and he even has special drs that completely specialize in that to keep kids that have it as healthy as possible.
Odds are this is going to be a relief to him. Kids hear more than we think they do, and he's likely heard this term, picked up on your concern when he's gotten sick, etc and wondered about it. And it will certainly be easier for you just to have it out in the open. It's an important thing to just be open and as things come up, answer them. I agree it's not necessary to have a 'big talk' but just answering questions as they arise and explaining new treatments as they are introduced and why they are being done, is likely to be best.
In response to the thread in general...
In our case, we had to have 'the talk' initially because Emily wasn't dx'ed until she was 7.5yrs old (developmentally about 5 due to learning disabilities.) But it didn't even occur to me, frankly, NOT to tell her. She was going to hear us talking about it and she had to go to the doctor and we had to talk to the teachers etc... there was NO way we could hide it from her and yet still introduce the treatments. It was not too bad. In the 2.5yrs since then we have explained new things as they have arisen. It's been tough emotionally of late, since she has reached a greater understanding of the 'chronic' nature of her disease and has had a harder time coping. She was told by a friend at school she was going to die of her CF. The HARD issues are cropping up and those are harder to address than 'why do I have to do these nebs.' She's seeing the CF social worker right now to help...
Elizabeth, yes, he should know- because eventually he WILL be told by someone else and it will cause confusion and hurt on his part and wonder why he wasn't told by the people he loves and trusts the most.
You may want to simply start by asking him 'have you ever heard us say 'CF' at the dr's office or when talking to other people, or the words 'cystic fibrosis'? Do you know what it means? Since he already knows he needs to keep from getting belly aches and to keep his lungs healthy, it will probably be easier than you think to explain it to him. Just telling him that the REASON he has to do those things (and no one else in the family or among his friends do) is because he has something called cystic fibrosis or 'CF', and he even has special drs that completely specialize in that to keep kids that have it as healthy as possible.
Odds are this is going to be a relief to him. Kids hear more than we think they do, and he's likely heard this term, picked up on your concern when he's gotten sick, etc and wondered about it. And it will certainly be easier for you just to have it out in the open. It's an important thing to just be open and as things come up, answer them. I agree it's not necessary to have a 'big talk' but just answering questions as they arise and explaining new treatments as they are introduced and why they are being done, is likely to be best.
In response to the thread in general...
In our case, we had to have 'the talk' initially because Emily wasn't dx'ed until she was 7.5yrs old (developmentally about 5 due to learning disabilities.) But it didn't even occur to me, frankly, NOT to tell her. She was going to hear us talking about it and she had to go to the doctor and we had to talk to the teachers etc... there was NO way we could hide it from her and yet still introduce the treatments. It was not too bad. In the 2.5yrs since then we have explained new things as they have arisen. It's been tough emotionally of late, since she has reached a greater understanding of the 'chronic' nature of her disease and has had a harder time coping. She was told by a friend at school she was going to die of her CF. The HARD issues are cropping up and those are harder to address than 'why do I have to do these nebs.' She's seeing the CF social worker right now to help...
You may want to simply start by asking him 'have you ever heard us say 'CF' at the dr's office or when talking to other people, or the words 'cystic fibrosis'? Do you know what it means? Since he already knows he needs to keep from getting belly aches and to keep his lungs healthy, it will probably be easier than you think to explain it to him. Just telling him that the REASON he has to do those things (and no one else in the family or among his friends do) is because he has something called cystic fibrosis or 'CF', and he even has special drs that completely specialize in that to keep kids that have it as healthy as possible.
Odds are this is going to be a relief to him. Kids hear more than we think they do, and he's likely heard this term, picked up on your concern when he's gotten sick, etc and wondered about it. And it will certainly be easier for you just to have it out in the open. It's an important thing to just be open and as things come up, answer them. I agree it's not necessary to have a 'big talk' but just answering questions as they arise and explaining new treatments as they are introduced and why they are being done, is likely to be best.
In response to the thread in general...
In our case, we had to have 'the talk' initially because Emily wasn't dx'ed until she was 7.5yrs old (developmentally about 5 due to learning disabilities.) But it didn't even occur to me, frankly, NOT to tell her. She was going to hear us talking about it and she had to go to the doctor and we had to talk to the teachers etc... there was NO way we could hide it from her and yet still introduce the treatments. It was not too bad. In the 2.5yrs since then we have explained new things as they have arisen. It's been tough emotionally of late, since she has reached a greater understanding of the 'chronic' nature of her disease and has had a harder time coping. She was told by a friend at school she was going to die of her CF. The HARD issues are cropping up and those are harder to address than 'why do I have to do these nebs.' She's seeing the CF social worker right now to help...
Elizabeth, yes, he should know- because eventually he WILL be told by someone else and it will cause confusion and hurt on his part and wonder why he wasn't told by the people he loves and trusts the most.
<br />
<br />You may want to simply start by asking him 'have you ever heard us say 'CF' at the dr's office or when talking to other people, or the words 'cystic fibrosis'? Do you know what it means? Since he already knows he needs to keep from getting belly aches and to keep his lungs healthy, it will probably be easier than you think to explain it to him. Just telling him that the REASON he has to do those things (and no one else in the family or among his friends do) is because he has something called cystic fibrosis or 'CF', and he even has special drs that completely specialize in that to keep kids that have it as healthy as possible.
<br />
<br />Odds are this is going to be a relief to him. Kids hear more than we think they do, and he's likely heard this term, picked up on your concern when he's gotten sick, etc and wondered about it. And it will certainly be easier for you just to have it out in the open. It's an important thing to just be open and as things come up, answer them. I agree it's not necessary to have a 'big talk' but just answering questions as they arise and explaining new treatments as they are introduced and why they are being done, is likely to be best.
<br />
<br />In response to the thread in general...
<br />In our case, we had to have 'the talk' initially because Emily wasn't dx'ed until she was 7.5yrs old (developmentally about 5 due to learning disabilities.) But it didn't even occur to me, frankly, NOT to tell her. She was going to hear us talking about it and she had to go to the doctor and we had to talk to the teachers etc... there was NO way we could hide it from her and yet still introduce the treatments. It was not too bad. In the 2.5yrs since then we have explained new things as they have arisen. It's been tough emotionally of late, since she has reached a greater understanding of the 'chronic' nature of her disease and has had a harder time coping. She was told by a friend at school she was going to die of her CF. The HARD issues are cropping up and those are harder to address than 'why do I have to do these nebs.' She's seeing the CF social worker right now to help...
<br />
<br />You may want to simply start by asking him 'have you ever heard us say 'CF' at the dr's office or when talking to other people, or the words 'cystic fibrosis'? Do you know what it means? Since he already knows he needs to keep from getting belly aches and to keep his lungs healthy, it will probably be easier than you think to explain it to him. Just telling him that the REASON he has to do those things (and no one else in the family or among his friends do) is because he has something called cystic fibrosis or 'CF', and he even has special drs that completely specialize in that to keep kids that have it as healthy as possible.
<br />
<br />Odds are this is going to be a relief to him. Kids hear more than we think they do, and he's likely heard this term, picked up on your concern when he's gotten sick, etc and wondered about it. And it will certainly be easier for you just to have it out in the open. It's an important thing to just be open and as things come up, answer them. I agree it's not necessary to have a 'big talk' but just answering questions as they arise and explaining new treatments as they are introduced and why they are being done, is likely to be best.
<br />
<br />In response to the thread in general...
<br />In our case, we had to have 'the talk' initially because Emily wasn't dx'ed until she was 7.5yrs old (developmentally about 5 due to learning disabilities.) But it didn't even occur to me, frankly, NOT to tell her. She was going to hear us talking about it and she had to go to the doctor and we had to talk to the teachers etc... there was NO way we could hide it from her and yet still introduce the treatments. It was not too bad. In the 2.5yrs since then we have explained new things as they have arisen. It's been tough emotionally of late, since she has reached a greater understanding of the 'chronic' nature of her disease and has had a harder time coping. She was told by a friend at school she was going to die of her CF. The HARD issues are cropping up and those are harder to address than 'why do I have to do these nebs.' She's seeing the CF social worker right now to help...
My parents were open with me but optimistic. We were and are a fundraising family so I heard the facts from an early age as well as saw people that weren't doing as well as I. They basically told me repeatedly that I needed to work hard to stay well in order to receive the "cure" when it came because what ever it was it wouldn't fix damage that was already done. They explained some it was luck but that hard work at keeping my lungs clear would allow me to live longer. I had a sort of I'm "better than all other cfers" attitude until I came on here and saw people doing stuff that was so much more amazing than my life's achievements and people with lung function higher than my own. A combo of all of this is my motivation even today.
My parents were open with me but optimistic. We were and are a fundraising family so I heard the facts from an early age as well as saw people that weren't doing as well as I. They basically told me repeatedly that I needed to work hard to stay well in order to receive the "cure" when it came because what ever it was it wouldn't fix damage that was already done. They explained some it was luck but that hard work at keeping my lungs clear would allow me to live longer. I had a sort of I'm "better than all other cfers" attitude until I came on here and saw people doing stuff that was so much more amazing than my life's achievements and people with lung function higher than my own. A combo of all of this is my motivation even today.
My parents were open with me but optimistic. We were and are a fundraising family so I heard the facts from an early age as well as saw people that weren't doing as well as I. They basically told me repeatedly that I needed to work hard to stay well in order to receive the "cure" when it came because what ever it was it wouldn't fix damage that was already done. They explained some it was luck but that hard work at keeping my lungs clear would allow me to live longer. I had a sort of I'm "better than all other cfers" attitude until I came on here and saw people doing stuff that was so much more amazing than my life's achievements and people with lung function higher than my own. A combo of all of this is my motivation even today.
<div class="FTQUOTE"><begin quote><i>I'm "better than all other cfers"</end quote></div>
Yea that was my attitude when I was younger and was pretty much how I was raised as well (the whole working hard thing, expecially stressed during my teenage years). The thing was though, when I was younger we didn't really have to do that much. In fact, there wasn't much more we could do. I remember being on the Tobi trial and dreading it when I was like 13 or something but besides that it was pulmozyme and exersize. From your signature you are about 10 years old than me so there was probably even less for you.
By the way did anybody have parents that went on lots of vacations from like age 1-8. I know mine did, probably because they felt guilty that I wasn't going to live that long (they were told age 5 when I was born).
Yea that was my attitude when I was younger and was pretty much how I was raised as well (the whole working hard thing, expecially stressed during my teenage years). The thing was though, when I was younger we didn't really have to do that much. In fact, there wasn't much more we could do. I remember being on the Tobi trial and dreading it when I was like 13 or something but besides that it was pulmozyme and exersize. From your signature you are about 10 years old than me so there was probably even less for you.
By the way did anybody have parents that went on lots of vacations from like age 1-8. I know mine did, probably because they felt guilty that I wasn't going to live that long (they were told age 5 when I was born).