When did you talk CF w/your kids?

HDsMom · Nov 7, 2008

So, I posted this in the teens thread for there opinion on when/how they learned they had CF, and I'd also like input from other parents on how you handled this. Hunter is almost 5yrs old and will be starting school next fall and I'm wondering if I should explain CF more to him now or wait.

For those that have children dx early, did you tell them much when they were
young, actually have some sort of CF talk, or did they just always know they had CF because it was talked about alot?
What about you guys who had children dx later, any input?

I'm worried that if I don't tell him the right things now, someone at school will say something that is either not true or he'll learn some scary statistic (like life expectancy) from a stranger instead of us.

I know he's only 5, but he's SO smart, I'm not sure what to tell him. He's already noticed that other kids don't have the same issues he has....this summer, when we were having a snack at the park, he asked me if other kids took enzymes - took me totally by surprise and I just said some kids do and some kids don't, the same with nebs, and I left it at that. CF is a regular word in our house - we aren't always discussing it in terms of calling it by name, but we don't purposely try to avoid saying it either - but the other day when I called the clinic and had to let the nurse know he was a CF patient & not regular pulmonology Hunter jumped in and started arguing with me that he didn't have CF - honestly I think he just likes to argue, but still it made me aware that he really doesn't make a connection to the word CF and himself at this point.

Do you think it would be too much for his age to know more now - or is there anything you think is important to explain to him now rather than wait? Should I save any more explanations for middle school or later? Or just wait until he asks me questions like he did about the enzymes at the park?

I don't want to be flippant about it, but I don't want to scare him either.

any input you have, even the smallest, would be great.

thanks a bunch guys <3

HDsMom · Nov 7, 2008

So, I posted this in the teens thread for there opinion on when/how they learned they had CF, and I'd also like input from other parents on how you handled this. Hunter is almost 5yrs old and will be starting school next fall and I'm wondering if I should explain CF more to him now or wait.

For those that have children dx early, did you tell them much when they were
young, actually have some sort of CF talk, or did they just always know they had CF because it was talked about alot?
What about you guys who had children dx later, any input?

I'm worried that if I don't tell him the right things now, someone at school will say something that is either not true or he'll learn some scary statistic (like life expectancy) from a stranger instead of us.

I know he's only 5, but he's SO smart, I'm not sure what to tell him. He's already noticed that other kids don't have the same issues he has....this summer, when we were having a snack at the park, he asked me if other kids took enzymes - took me totally by surprise and I just said some kids do and some kids don't, the same with nebs, and I left it at that. CF is a regular word in our house - we aren't always discussing it in terms of calling it by name, but we don't purposely try to avoid saying it either - but the other day when I called the clinic and had to let the nurse know he was a CF patient & not regular pulmonology Hunter jumped in and started arguing with me that he didn't have CF - honestly I think he just likes to argue, but still it made me aware that he really doesn't make a connection to the word CF and himself at this point.

Do you think it would be too much for his age to know more now - or is there anything you think is important to explain to him now rather than wait? Should I save any more explanations for middle school or later? Or just wait until he asks me questions like he did about the enzymes at the park?

I don't want to be flippant about it, but I don't want to scare him either.

any input you have, even the smallest, would be great.

thanks a bunch guys <3

HDsMom · Nov 7, 2008

So, I posted this in the teens thread for there opinion on when/how they learned they had CF, and I'd also like input from other parents on how you handled this. Hunter is almost 5yrs old and will be starting school next fall and I'm wondering if I should explain CF more to him now or wait.

For those that have children dx early, did you tell them much when they were
young, actually have some sort of CF talk, or did they just always know they had CF because it was talked about alot?
What about you guys who had children dx later, any input?

I'm worried that if I don't tell him the right things now, someone at school will say something that is either not true or he'll learn some scary statistic (like life expectancy) from a stranger instead of us.

I know he's only 5, but he's SO smart, I'm not sure what to tell him. He's already noticed that other kids don't have the same issues he has....this summer, when we were having a snack at the park, he asked me if other kids took enzymes - took me totally by surprise and I just said some kids do and some kids don't, the same with nebs, and I left it at that. CF is a regular word in our house - we aren't always discussing it in terms of calling it by name, but we don't purposely try to avoid saying it either - but the other day when I called the clinic and had to let the nurse know he was a CF patient & not regular pulmonology Hunter jumped in and started arguing with me that he didn't have CF - honestly I think he just likes to argue, but still it made me aware that he really doesn't make a connection to the word CF and himself at this point.

Do you think it would be too much for his age to know more now - or is there anything you think is important to explain to him now rather than wait? Should I save any more explanations for middle school or later? Or just wait until he asks me questions like he did about the enzymes at the park?

I don't want to be flippant about it, but I don't want to scare him either.

any input you have, even the smallest, would be great.

thanks a bunch guys <3

HDsMom · Nov 7, 2008

So, I posted this in the teens thread for there opinion on when/how they learned they had CF, and I'd also like input from other parents on how you handled this. Hunter is almost 5yrs old and will be starting school next fall and I'm wondering if I should explain CF more to him now or wait.

For those that have children dx early, did you tell them much when they were
young, actually have some sort of CF talk, or did they just always know they had CF because it was talked about alot?
What about you guys who had children dx later, any input?

I'm worried that if I don't tell him the right things now, someone at school will say something that is either not true or he'll learn some scary statistic (like life expectancy) from a stranger instead of us.

I know he's only 5, but he's SO smart, I'm not sure what to tell him. He's already noticed that other kids don't have the same issues he has....this summer, when we were having a snack at the park, he asked me if other kids took enzymes - took me totally by surprise and I just said some kids do and some kids don't, the same with nebs, and I left it at that. CF is a regular word in our house - we aren't always discussing it in terms of calling it by name, but we don't purposely try to avoid saying it either - but the other day when I called the clinic and had to let the nurse know he was a CF patient & not regular pulmonology Hunter jumped in and started arguing with me that he didn't have CF - honestly I think he just likes to argue, but still it made me aware that he really doesn't make a connection to the word CF and himself at this point.

Do you think it would be too much for his age to know more now - or is there anything you think is important to explain to him now rather than wait? Should I save any more explanations for middle school or later? Or just wait until he asks me questions like he did about the enzymes at the park?

I don't want to be flippant about it, but I don't want to scare him either.

any input you have, even the smallest, would be great.

thanks a bunch guys <3

HDsMom · Nov 7, 2008

So, I posted this in the teens thread for there opinion on when/how they learned they had CF, and I'd also like input from other parents on how you handled this. Hunter is almost 5yrs old and will be starting school next fall and I'm wondering if I should explain CF more to him now or wait.
 
 For those that have children dx early, did you tell them much when they were
 young, actually have some sort of CF talk, or did they just always know they had CF because it was talked about alot?
 What about you guys who had children dx later, any input?
 
 I'm worried that if I don't tell him the right things now, someone at school will say something that is either not true or he'll learn some scary statistic (like life expectancy) from a stranger instead of us.
 
 I know he's only 5, but he's SO smart, I'm not sure what to tell him. He's already noticed that other kids don't have the same issues he has....this summer, when we were having a snack at the park, he asked me if other kids took enzymes - took me totally by surprise and I just said some kids do and some kids don't, the same with nebs, and I left it at that. CF is a regular word in our house - we aren't always discussing it in terms of calling it by name, but we don't purposely try to avoid saying it either - but the other day when I called the clinic and had to let the nurse know he was a CF patient & not regular pulmonology Hunter jumped in and started arguing with me that he didn't have CF - honestly I think he just likes to argue, but still it made me aware that he really doesn't make a connection to the word CF and himself at this point.
 
 Do you think it would be too much for his age to know more now - or is there anything you think is important to explain to him now rather than wait? Should I save any more explanations for middle school or later? Or just wait until he asks me questions like he did about the enzymes at the park?
 
 I don't want to be flippant about it, but I don't want to scare him either.
 
 any input you have, even the smallest, would be great.
 
 thanks a bunch guys <3

marla · Nov 7, 2008

I would address questions as they came up. My son is a teen and that's how we handled it. My son started asking about life expectancy when he was about 12 years old. At the time, I told him that people with CF can have complications with their lungs that could be fatal and that's why it's important that he do all his treatments and keep himself as healthy as possible. We've always been very positive and talked about how medical advances are happening so he has a great chance of living a long life if he takes care of himself now. I definitely think your child will let you know what he's ready to learn about by his questions.

marla · Nov 7, 2008

I would address questions as they came up. My son is a teen and that's how we handled it. My son started asking about life expectancy when he was about 12 years old. At the time, I told him that people with CF can have complications with their lungs that could be fatal and that's why it's important that he do all his treatments and keep himself as healthy as possible. We've always been very positive and talked about how medical advances are happening so he has a great chance of living a long life if he takes care of himself now. I definitely think your child will let you know what he's ready to learn about by his questions.

marla · Nov 7, 2008

I would address questions as they came up. My son is a teen and that's how we handled it. My son started asking about life expectancy when he was about 12 years old. At the time, I told him that people with CF can have complications with their lungs that could be fatal and that's why it's important that he do all his treatments and keep himself as healthy as possible. We've always been very positive and talked about how medical advances are happening so he has a great chance of living a long life if he takes care of himself now. I definitely think your child will let you know what he's ready to learn about by his questions.

marla · Nov 7, 2008

I would address questions as they came up. My son is a teen and that's how we handled it. My son started asking about life expectancy when he was about 12 years old. At the time, I told him that people with CF can have complications with their lungs that could be fatal and that's why it's important that he do all his treatments and keep himself as healthy as possible. We've always been very positive and talked about how medical advances are happening so he has a great chance of living a long life if he takes care of himself now. I definitely think your child will let you know what he's ready to learn about by his questions.

marla · Nov 7, 2008

I would address questions as they came up. My son is a teen and that's how we handled it. My son started asking about life expectancy when he was about 12 years old. At the time, I told him that people with CF can have complications with their lungs that could be fatal and that's why it's important that he do all his treatments and keep himself as healthy as possible. We've always been very positive and talked about how medical advances are happening so he has a great chance of living a long life if he takes care of himself now. I definitely think your child will let you know what he's ready to learn about by his questions.

jaimers · Nov 7, 2008

my parents addressed questions as i asked them. since i was diagnosed at birth it was totally normal for me to do my treatments etc. b/c i had always done them so that didn't seem weird to me.
my parents just always encouraged me to do whatever i wanted but especially active things because they said it would be good for my lungs. and they never stopped me from doing things i wanted to do b/c of cf. i went to summer camp with IVs, and vacation bible school with IVs and overnight trips where my mom would go too and to chest pt (this was pre-vest for me) etc.
once i was old enough to get on the internet i read more about cf and freaked myself out. ended up hysterically crying in the doctors office but my doc at the time assured me that medicine was still advancing etc etc etc.
so yeah, all that to say i would just address things as they come up! and certainly tell the truth but stress the importance of taking care of yourself in that moment and not stressing over the future because you never know how things are going to progress.

jaimers · Nov 7, 2008

my parents addressed questions as i asked them. since i was diagnosed at birth it was totally normal for me to do my treatments etc. b/c i had always done them so that didn't seem weird to me.
my parents just always encouraged me to do whatever i wanted but especially active things because they said it would be good for my lungs. and they never stopped me from doing things i wanted to do b/c of cf. i went to summer camp with IVs, and vacation bible school with IVs and overnight trips where my mom would go too and to chest pt (this was pre-vest for me) etc.
once i was old enough to get on the internet i read more about cf and freaked myself out. ended up hysterically crying in the doctors office but my doc at the time assured me that medicine was still advancing etc etc etc.
so yeah, all that to say i would just address things as they come up! and certainly tell the truth but stress the importance of taking care of yourself in that moment and not stressing over the future because you never know how things are going to progress.

jaimers · Nov 7, 2008

my parents addressed questions as i asked them. since i was diagnosed at birth it was totally normal for me to do my treatments etc. b/c i had always done them so that didn't seem weird to me.
my parents just always encouraged me to do whatever i wanted but especially active things because they said it would be good for my lungs. and they never stopped me from doing things i wanted to do b/c of cf. i went to summer camp with IVs, and vacation bible school with IVs and overnight trips where my mom would go too and to chest pt (this was pre-vest for me) etc.
once i was old enough to get on the internet i read more about cf and freaked myself out. ended up hysterically crying in the doctors office but my doc at the time assured me that medicine was still advancing etc etc etc.
so yeah, all that to say i would just address things as they come up! and certainly tell the truth but stress the importance of taking care of yourself in that moment and not stressing over the future because you never know how things are going to progress.

jaimers · Nov 7, 2008

my parents addressed questions as i asked them. since i was diagnosed at birth it was totally normal for me to do my treatments etc. b/c i had always done them so that didn't seem weird to me.
my parents just always encouraged me to do whatever i wanted but especially active things because they said it would be good for my lungs. and they never stopped me from doing things i wanted to do b/c of cf. i went to summer camp with IVs, and vacation bible school with IVs and overnight trips where my mom would go too and to chest pt (this was pre-vest for me) etc.
once i was old enough to get on the internet i read more about cf and freaked myself out. ended up hysterically crying in the doctors office but my doc at the time assured me that medicine was still advancing etc etc etc.
so yeah, all that to say i would just address things as they come up! and certainly tell the truth but stress the importance of taking care of yourself in that moment and not stressing over the future because you never know how things are going to progress.

jaimers · Nov 7, 2008

my parents addressed questions as i asked them. since i was diagnosed at birth it was totally normal for me to do my treatments etc. b/c i had always done them so that didn't seem weird to me.
 my parents just always encouraged me to do whatever i wanted but especially active things because they said it would be good for my lungs. and they never stopped me from doing things i wanted to do b/c of cf. i went to summer camp with IVs, and vacation bible school with IVs and overnight trips where my mom would go too and to chest pt (this was pre-vest for me) etc.
 once i was old enough to get on the internet i read more about cf and freaked myself out. ended up hysterically crying in the doctors office but my doc at the time assured me that medicine was still advancing etc etc etc.
 so yeah, all that to say i would just address things as they come up! and certainly tell the truth but stress the importance of taking care of yourself in that moment and not stressing over the future because you never know how things are going to progress.

rubyroselee · Nov 7, 2008

I would also just address things as he was concerned about them or as he asked. I think at his age, he's not really too concerned about it; he's probably more interested in playing and normal 5-year-old stuff. If he has a concern or question I'm sure he'll come to you and ask.

When I was a kid, CF was just a normal term used in our house and all the things I had to do were normal and routine. I never thought of it any differently. Until I was about your son's age though, I thought that ALL kids had to take enzymes, do CPT, go to the doctors, etc.

I remember one particular day that I was watching TV with my best friend and I was about 5 or 6 years old. I asked him, "So when is your next appointment with your CF doctor?" He gave me the strangest look. He said, "I don't have a CF doctor?" I was thinking in my head that everybody must have a CF doctor, what is he talking about? So after thinking about it for awhile I realized that he was right and that none of my other friends or my brother had to see a CF doctor, take enzymes, or get CPT.

So unless he's concerned about something or curious with regards to CF, I wouldn't really worry about talking to him about it. He's probably content in his world and doesn't really need to worry about the CF stuff.

rubyroselee · Nov 7, 2008

I would also just address things as he was concerned about them or as he asked. I think at his age, he's not really too concerned about it; he's probably more interested in playing and normal 5-year-old stuff. If he has a concern or question I'm sure he'll come to you and ask.

When I was a kid, CF was just a normal term used in our house and all the things I had to do were normal and routine. I never thought of it any differently. Until I was about your son's age though, I thought that ALL kids had to take enzymes, do CPT, go to the doctors, etc.

I remember one particular day that I was watching TV with my best friend and I was about 5 or 6 years old. I asked him, "So when is your next appointment with your CF doctor?" He gave me the strangest look. He said, "I don't have a CF doctor?" I was thinking in my head that everybody must have a CF doctor, what is he talking about? So after thinking about it for awhile I realized that he was right and that none of my other friends or my brother had to see a CF doctor, take enzymes, or get CPT.

So unless he's concerned about something or curious with regards to CF, I wouldn't really worry about talking to him about it. He's probably content in his world and doesn't really need to worry about the CF stuff.

rubyroselee · Nov 7, 2008

I would also just address things as he was concerned about them or as he asked. I think at his age, he's not really too concerned about it; he's probably more interested in playing and normal 5-year-old stuff. If he has a concern or question I'm sure he'll come to you and ask.

When I was a kid, CF was just a normal term used in our house and all the things I had to do were normal and routine. I never thought of it any differently. Until I was about your son's age though, I thought that ALL kids had to take enzymes, do CPT, go to the doctors, etc.

I remember one particular day that I was watching TV with my best friend and I was about 5 or 6 years old. I asked him, "So when is your next appointment with your CF doctor?" He gave me the strangest look. He said, "I don't have a CF doctor?" I was thinking in my head that everybody must have a CF doctor, what is he talking about? So after thinking about it for awhile I realized that he was right and that none of my other friends or my brother had to see a CF doctor, take enzymes, or get CPT.

So unless he's concerned about something or curious with regards to CF, I wouldn't really worry about talking to him about it. He's probably content in his world and doesn't really need to worry about the CF stuff.

rubyroselee · Nov 7, 2008

I would also just address things as he was concerned about them or as he asked. I think at his age, he's not really too concerned about it; he's probably more interested in playing and normal 5-year-old stuff. If he has a concern or question I'm sure he'll come to you and ask.

When I was a kid, CF was just a normal term used in our house and all the things I had to do were normal and routine. I never thought of it any differently. Until I was about your son's age though, I thought that ALL kids had to take enzymes, do CPT, go to the doctors, etc.

I remember one particular day that I was watching TV with my best friend and I was about 5 or 6 years old. I asked him, "So when is your next appointment with your CF doctor?" He gave me the strangest look. He said, "I don't have a CF doctor?" I was thinking in my head that everybody must have a CF doctor, what is he talking about? So after thinking about it for awhile I realized that he was right and that none of my other friends or my brother had to see a CF doctor, take enzymes, or get CPT.

So unless he's concerned about something or curious with regards to CF, I wouldn't really worry about talking to him about it. He's probably content in his world and doesn't really need to worry about the CF stuff.

rubyroselee · Nov 7, 2008

I would also just address things as he was concerned about them or as he asked. I think at his age, he's not really too concerned about it; he's probably more interested in playing and normal 5-year-old stuff. If he has a concern or question I'm sure he'll come to you and ask.
 
 When I was a kid, CF was just a normal term used in our house and all the things I had to do were normal and routine. I never thought of it any differently. Until I was about your son's age though, I thought that ALL kids had to take enzymes, do CPT, go to the doctors, etc.
 
 I remember one particular day that I was watching TV with my best friend and I was about 5 or 6 years old. I asked him, "So when is your next appointment with your CF doctor?" He gave me the strangest look. He said, "I don't have a CF doctor?" I was thinking in my head that everybody must have a CF doctor, what is he talking about? So after thinking about it for awhile I realized that he was right and that none of my other friends or my brother had to see a CF doctor, take enzymes, or get CPT.
 
 So unless he's concerned about something or curious with regards to CF, I wouldn't really worry about talking to him about it. He's probably content in his world and doesn't really need to worry about the CF stuff.

When did you talk CF w/your kids?

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