***Need your opinion about telling child he has CF***

H

HDsMom

Guest
So, I'm not a teen, but I'm a mom to an almost 5yr old, who will be starting school next fall and I'm wondering if I should explain CF more to him now or wait. I was hoping to get your perspective, since you will most likely have an idea of what it was like to be young and have CF.

For those that have been dx early, did your parents tell you much when you were
young, or did you just always know you had CF?
What about you guys who were dx later, any input?

I'm worried that if I don't tell him the right things, 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, but the other day when I called the clinic and had to let the nurse know he was a CF patient not regular pulmonolgy and he jumped in and started arguing 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 have worried you more to know more than that - or is there anything you wished someone would have explained to you better before you went to school??? Should I save any more explanations for middle school or later? Or just wait until he asks more questions?

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

thanks a bunch guys <3
 
H

HDsMom

Guest
So, I'm not a teen, but I'm a mom to an almost 5yr old, who will be starting school next fall and I'm wondering if I should explain CF more to him now or wait. I was hoping to get your perspective, since you will most likely have an idea of what it was like to be young and have CF.

For those that have been dx early, did your parents tell you much when you were
young, or did you just always know you had CF?
What about you guys who were dx later, any input?

I'm worried that if I don't tell him the right things, 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, but the other day when I called the clinic and had to let the nurse know he was a CF patient not regular pulmonolgy and he jumped in and started arguing 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 have worried you more to know more than that - or is there anything you wished someone would have explained to you better before you went to school??? Should I save any more explanations for middle school or later? Or just wait until he asks more questions?

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

thanks a bunch guys <3
 
H

HDsMom

Guest
So, I'm not a teen, but I'm a mom to an almost 5yr old, who will be starting school next fall and I'm wondering if I should explain CF more to him now or wait. I was hoping to get your perspective, since you will most likely have an idea of what it was like to be young and have CF.

For those that have been dx early, did your parents tell you much when you were
young, or did you just always know you had CF?
What about you guys who were dx later, any input?

I'm worried that if I don't tell him the right things, 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, but the other day when I called the clinic and had to let the nurse know he was a CF patient not regular pulmonolgy and he jumped in and started arguing 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 have worried you more to know more than that - or is there anything you wished someone would have explained to you better before you went to school??? Should I save any more explanations for middle school or later? Or just wait until he asks more questions?

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

thanks a bunch guys <3
 
H

HDsMom

Guest
So, I'm not a teen, but I'm a mom to an almost 5yr old, who will be starting school next fall and I'm wondering if I should explain CF more to him now or wait. I was hoping to get your perspective, since you will most likely have an idea of what it was like to be young and have CF.

For those that have been dx early, did your parents tell you much when you were
young, or did you just always know you had CF?
What about you guys who were dx later, any input?

I'm worried that if I don't tell him the right things, 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, but the other day when I called the clinic and had to let the nurse know he was a CF patient not regular pulmonolgy and he jumped in and started arguing 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 have worried you more to know more than that - or is there anything you wished someone would have explained to you better before you went to school??? Should I save any more explanations for middle school or later? Or just wait until he asks more questions?

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

thanks a bunch guys <3
 
H

HDsMom

Guest
So, I'm not a teen, but I'm a mom to an almost 5yr old, who will be starting school next fall and I'm wondering if I should explain CF more to him now or wait. I was hoping to get your perspective, since you will most likely have an idea of what it was like to be young and have CF.
<br />
<br />For those that have been dx early, did your parents tell you much when you were
<br />young, or did you just always know you had CF?
<br />What about you guys who were dx later, any input?
<br />
<br />I'm worried that if I don't tell him the right things, 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.
<br />
<br />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, but the other day when I called the clinic and had to let the nurse know he was a CF patient not regular pulmonolgy and he jumped in and started arguing 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.
<br />
<br />Do you think it would have worried you more to know more than that - or is there anything you wished someone would have explained to you better before you went to school??? Should I save any more explanations for middle school or later? Or just wait until he asks more questions?
<br />
<br />any input you have, even the sallest, would be great.
<br />
<br />thanks a bunch guys <3
<br />
 
P

PeteRose

Guest
I can only go by my past experience. I was diagnosed when I was 6 months old (in 1962) - my parents ALWAYS told me everything. They never hid any of the details about my disease from me. As soon as they found out something I found it out. CF was WAY different back then, the statistics were much scarier. IMO CF is not a death sentence anymore, be open and honest. Let him know that he can come to you with any question about CF and you will tell him the truth, even if it is hard. It is still his disease and it is his right to know. Again this is just my opinion, I'm sure that others will give you theirs.

Rosie 47 w/CF
 
P

PeteRose

Guest
I can only go by my past experience. I was diagnosed when I was 6 months old (in 1962) - my parents ALWAYS told me everything. They never hid any of the details about my disease from me. As soon as they found out something I found it out. CF was WAY different back then, the statistics were much scarier. IMO CF is not a death sentence anymore, be open and honest. Let him know that he can come to you with any question about CF and you will tell him the truth, even if it is hard. It is still his disease and it is his right to know. Again this is just my opinion, I'm sure that others will give you theirs.

Rosie 47 w/CF
 
P

PeteRose

Guest
I can only go by my past experience. I was diagnosed when I was 6 months old (in 1962) - my parents ALWAYS told me everything. They never hid any of the details about my disease from me. As soon as they found out something I found it out. CF was WAY different back then, the statistics were much scarier. IMO CF is not a death sentence anymore, be open and honest. Let him know that he can come to you with any question about CF and you will tell him the truth, even if it is hard. It is still his disease and it is his right to know. Again this is just my opinion, I'm sure that others will give you theirs.

Rosie 47 w/CF
 
P

PeteRose

Guest
I can only go by my past experience. I was diagnosed when I was 6 months old (in 1962) - my parents ALWAYS told me everything. They never hid any of the details about my disease from me. As soon as they found out something I found it out. CF was WAY different back then, the statistics were much scarier. IMO CF is not a death sentence anymore, be open and honest. Let him know that he can come to you with any question about CF and you will tell him the truth, even if it is hard. It is still his disease and it is his right to know. Again this is just my opinion, I'm sure that others will give you theirs.

Rosie 47 w/CF
 
P

PeteRose

Guest
I can only go by my past experience. I was diagnosed when I was 6 months old (in 1962) - my parents ALWAYS told me everything. They never hid any of the details about my disease from me. As soon as they found out something I found it out. CF was WAY different back then, the statistics were much scarier. IMO CF is not a death sentence anymore, be open and honest. Let him know that he can come to you with any question about CF and you will tell him the truth, even if it is hard. It is still his disease and it is his right to know. Again this is just my opinion, I'm sure that others will give you theirs.
<br />
<br />Rosie 47 w/CF
 
R

Raynie

New member
I was diagnosed in the first week of my life and honestly I don't remember them actually telling me. I just always knew. But, I never saw myself as different, even though I have this disease that no one else at my school has. The answer they generally gave me is that I took the pills and the neb meds "to keep me well."

The most important thing: DO NOT HIDE IT FROM HIM. And don't make him feel like he has to hide it. He won't learn anything about CF in school until biology in middle school or high school.

I say just go with the flow right now. If he has questions, answer them honestly. Otherwise, don't bother him with details that might confuse him or stress him out. Just make sure he does what he's suppose to to keep well, and leave it at that. Since CF is a common word in your house, the connection should be made naturally (as it was for me).

My advice is just to not make it a big deal topic-wise. Make it as casual a topic as possible for him. That way, either you will know when to sit him down and talk or he will come to you.

Don't stress too much. He's got plenty of time to put it all together. :]

^ my 2 cents.

-Annie

***EDIT***

OH! One more thing. If you are worried about a teacher or administrator saying something negative to him, we ALWAYS talked to the teachers before school started, gave them a heads up, and they left it at that. It was never a big thing and they didn't tell me scary stuff. Most of them had never heard of CF before anyways. And parents of other kids won't know he has CF so they can't tell him scary statistics. Don't worry about that. Make it clear not to talk about it and that solves the problem.
 
R

Raynie

New member
I was diagnosed in the first week of my life and honestly I don't remember them actually telling me. I just always knew. But, I never saw myself as different, even though I have this disease that no one else at my school has. The answer they generally gave me is that I took the pills and the neb meds "to keep me well."

The most important thing: DO NOT HIDE IT FROM HIM. And don't make him feel like he has to hide it. He won't learn anything about CF in school until biology in middle school or high school.

I say just go with the flow right now. If he has questions, answer them honestly. Otherwise, don't bother him with details that might confuse him or stress him out. Just make sure he does what he's suppose to to keep well, and leave it at that. Since CF is a common word in your house, the connection should be made naturally (as it was for me).

My advice is just to not make it a big deal topic-wise. Make it as casual a topic as possible for him. That way, either you will know when to sit him down and talk or he will come to you.

Don't stress too much. He's got plenty of time to put it all together. :]

^ my 2 cents.

-Annie

***EDIT***

OH! One more thing. If you are worried about a teacher or administrator saying something negative to him, we ALWAYS talked to the teachers before school started, gave them a heads up, and they left it at that. It was never a big thing and they didn't tell me scary stuff. Most of them had never heard of CF before anyways. And parents of other kids won't know he has CF so they can't tell him scary statistics. Don't worry about that. Make it clear not to talk about it and that solves the problem.
 
R

Raynie

New member
I was diagnosed in the first week of my life and honestly I don't remember them actually telling me. I just always knew. But, I never saw myself as different, even though I have this disease that no one else at my school has. The answer they generally gave me is that I took the pills and the neb meds "to keep me well."

The most important thing: DO NOT HIDE IT FROM HIM. And don't make him feel like he has to hide it. He won't learn anything about CF in school until biology in middle school or high school.

I say just go with the flow right now. If he has questions, answer them honestly. Otherwise, don't bother him with details that might confuse him or stress him out. Just make sure he does what he's suppose to to keep well, and leave it at that. Since CF is a common word in your house, the connection should be made naturally (as it was for me).

My advice is just to not make it a big deal topic-wise. Make it as casual a topic as possible for him. That way, either you will know when to sit him down and talk or he will come to you.

Don't stress too much. He's got plenty of time to put it all together. :]

^ my 2 cents.

-Annie

***EDIT***

OH! One more thing. If you are worried about a teacher or administrator saying something negative to him, we ALWAYS talked to the teachers before school started, gave them a heads up, and they left it at that. It was never a big thing and they didn't tell me scary stuff. Most of them had never heard of CF before anyways. And parents of other kids won't know he has CF so they can't tell him scary statistics. Don't worry about that. Make it clear not to talk about it and that solves the problem.
 
R

Raynie

New member
I was diagnosed in the first week of my life and honestly I don't remember them actually telling me. I just always knew. But, I never saw myself as different, even though I have this disease that no one else at my school has. The answer they generally gave me is that I took the pills and the neb meds "to keep me well."

The most important thing: DO NOT HIDE IT FROM HIM. And don't make him feel like he has to hide it. He won't learn anything about CF in school until biology in middle school or high school.

I say just go with the flow right now. If he has questions, answer them honestly. Otherwise, don't bother him with details that might confuse him or stress him out. Just make sure he does what he's suppose to to keep well, and leave it at that. Since CF is a common word in your house, the connection should be made naturally (as it was for me).

My advice is just to not make it a big deal topic-wise. Make it as casual a topic as possible for him. That way, either you will know when to sit him down and talk or he will come to you.

Don't stress too much. He's got plenty of time to put it all together. :]

^ my 2 cents.

-Annie

***EDIT***

OH! One more thing. If you are worried about a teacher or administrator saying something negative to him, we ALWAYS talked to the teachers before school started, gave them a heads up, and they left it at that. It was never a big thing and they didn't tell me scary stuff. Most of them had never heard of CF before anyways. And parents of other kids won't know he has CF so they can't tell him scary statistics. Don't worry about that. Make it clear not to talk about it and that solves the problem.
 
R

Raynie

New member
I was diagnosed in the first week of my life and honestly I don't remember them actually telling me. I just always knew. But, I never saw myself as different, even though I have this disease that no one else at my school has. The answer they generally gave me is that I took the pills and the neb meds "to keep me well."
<br />
<br />The most important thing: DO NOT HIDE IT FROM HIM. And don't make him feel like he has to hide it. He won't learn anything about CF in school until biology in middle school or high school.
<br />
<br />I say just go with the flow right now. If he has questions, answer them honestly. Otherwise, don't bother him with details that might confuse him or stress him out. Just make sure he does what he's suppose to to keep well, and leave it at that. Since CF is a common word in your house, the connection should be made naturally (as it was for me).
<br />
<br />My advice is just to not make it a big deal topic-wise. Make it as casual a topic as possible for him. That way, either you will know when to sit him down and talk or he will come to you.
<br />
<br />Don't stress too much. He's got plenty of time to put it all together. :]
<br />
<br />^ my 2 cents.
<br />
<br />-Annie
<br />
<br />***EDIT***
<br />
<br />OH! One more thing. If you are worried about a teacher or administrator saying something negative to him, we ALWAYS talked to the teachers before school started, gave them a heads up, and they left it at that. It was never a big thing and they didn't tell me scary stuff. Most of them had never heard of CF before anyways. And parents of other kids won't know he has CF so they can't tell him scary statistics. Don't worry about that. Make it clear not to talk about it and that solves the problem.
 
R

Raynie

New member
One more thing, as far as being open for details, most of my life I told my parents I didn't want to know any more about CF than I had to. It was barely a part of my life (I've always been very healthy) and I didn't want to think about it beyond my normal routine. And that was how my house was run. No discussions unless I brought it up. And when I said I didn't want to hear anymore about my disease, the discussion was over. It worked out nicely for me.

But as far as the rest of my advice, read my first reply. This was more a of personal experience moment. :]

-Annie
 
R

Raynie

New member
One more thing, as far as being open for details, most of my life I told my parents I didn't want to know any more about CF than I had to. It was barely a part of my life (I've always been very healthy) and I didn't want to think about it beyond my normal routine. And that was how my house was run. No discussions unless I brought it up. And when I said I didn't want to hear anymore about my disease, the discussion was over. It worked out nicely for me.

But as far as the rest of my advice, read my first reply. This was more a of personal experience moment. :]

-Annie
 
R

Raynie

New member
One more thing, as far as being open for details, most of my life I told my parents I didn't want to know any more about CF than I had to. It was barely a part of my life (I've always been very healthy) and I didn't want to think about it beyond my normal routine. And that was how my house was run. No discussions unless I brought it up. And when I said I didn't want to hear anymore about my disease, the discussion was over. It worked out nicely for me.

But as far as the rest of my advice, read my first reply. This was more a of personal experience moment. :]

-Annie
 
R

Raynie

New member
One more thing, as far as being open for details, most of my life I told my parents I didn't want to know any more about CF than I had to. It was barely a part of my life (I've always been very healthy) and I didn't want to think about it beyond my normal routine. And that was how my house was run. No discussions unless I brought it up. And when I said I didn't want to hear anymore about my disease, the discussion was over. It worked out nicely for me.

But as far as the rest of my advice, read my first reply. This was more a of personal experience moment. :]

-Annie
 
R

Raynie

New member
One more thing, as far as being open for details, most of my life I told my parents I didn't want to know any more about CF than I had to. It was barely a part of my life (I've always been very healthy) and I didn't want to think about it beyond my normal routine. And that was how my house was run. No discussions unless I brought it up. And when I said I didn't want to hear anymore about my disease, the discussion was over. It worked out nicely for me.
<br />
<br />But as far as the rest of my advice, read my first reply. This was more a of personal experience moment. :]
<br />
<br />-Annie
 
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