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

W

welshwitch

Guest
Hi!

This is definitely a tricky issue. When I was younger, my parents were very open about CF. HOWEVER, they were not so open about the scary stuff (life expectancy, people dying of CF, etc.) This I found out from others, reading books, the CF Newsletter, etc. So this was not an ideal way to learn about the negative stuff. When I confronted my parents, they said, "You're gonna live to be an old lady." However, this seemed to contradict what I had read, and scared me even more. On top of that, doctors seemed to feed me very morbid info.

SO, I don't really know what to advise, except that what you are telling your child should be consistent with what your child hears from the outside (believe me, they will find out stuff about CF externally, for better or worse.) Stay away from outdated info and just be positive and realistic. I know that my parents did the best they could and that CF really has no guarantees. Take it a day at a time.
 
W

welshwitch

Guest
Hi!

This is definitely a tricky issue. When I was younger, my parents were very open about CF. HOWEVER, they were not so open about the scary stuff (life expectancy, people dying of CF, etc.) This I found out from others, reading books, the CF Newsletter, etc. So this was not an ideal way to learn about the negative stuff. When I confronted my parents, they said, "You're gonna live to be an old lady." However, this seemed to contradict what I had read, and scared me even more. On top of that, doctors seemed to feed me very morbid info.

SO, I don't really know what to advise, except that what you are telling your child should be consistent with what your child hears from the outside (believe me, they will find out stuff about CF externally, for better or worse.) Stay away from outdated info and just be positive and realistic. I know that my parents did the best they could and that CF really has no guarantees. Take it a day at a time.
 
W

welshwitch

Guest
Hi!

This is definitely a tricky issue. When I was younger, my parents were very open about CF. HOWEVER, they were not so open about the scary stuff (life expectancy, people dying of CF, etc.) This I found out from others, reading books, the CF Newsletter, etc. So this was not an ideal way to learn about the negative stuff. When I confronted my parents, they said, "You're gonna live to be an old lady." However, this seemed to contradict what I had read, and scared me even more. On top of that, doctors seemed to feed me very morbid info.

SO, I don't really know what to advise, except that what you are telling your child should be consistent with what your child hears from the outside (believe me, they will find out stuff about CF externally, for better or worse.) Stay away from outdated info and just be positive and realistic. I know that my parents did the best they could and that CF really has no guarantees. Take it a day at a time.
 
W

welshwitch

Guest
Hi!

This is definitely a tricky issue. When I was younger, my parents were very open about CF. HOWEVER, they were not so open about the scary stuff (life expectancy, people dying of CF, etc.) This I found out from others, reading books, the CF Newsletter, etc. So this was not an ideal way to learn about the negative stuff. When I confronted my parents, they said, "You're gonna live to be an old lady." However, this seemed to contradict what I had read, and scared me even more. On top of that, doctors seemed to feed me very morbid info.

SO, I don't really know what to advise, except that what you are telling your child should be consistent with what your child hears from the outside (believe me, they will find out stuff about CF externally, for better or worse.) Stay away from outdated info and just be positive and realistic. I know that my parents did the best they could and that CF really has no guarantees. Take it a day at a time.
 
W

welshwitch

Guest
Hi!
<br />
<br />This is definitely a tricky issue. When I was younger, my parents were very open about CF. HOWEVER, they were not so open about the scary stuff (life expectancy, people dying of CF, etc.) This I found out from others, reading books, the CF Newsletter, etc. So this was not an ideal way to learn about the negative stuff. When I confronted my parents, they said, "You're gonna live to be an old lady." However, this seemed to contradict what I had read, and scared me even more. On top of that, doctors seemed to feed me very morbid info.
<br />
<br />SO, I don't really know what to advise, except that what you are telling your child should be consistent with what your child hears from the outside (believe me, they will find out stuff about CF externally, for better or worse.) Stay away from outdated info and just be positive and realistic. I know that my parents did the best they could and that CF really has no guarantees. Take it a day at a time.
 
G

ginandbrea

New member
Hi!,

Everyone here has given really good advise.

Last year my daughter Breanna was diagnosed at 9 y/o. Immediately she was admitted to the hospital with an FEV1 of 52%. Of course there were all kind of questions she had, but I could not answer them, CF was new to me as well. I spoke with the social worker at Children's Hospital and she advised me to be honest, but conservative.

When Breanna was discharged she went right back to dance class. A girl in her class asked where she had been for the past 2 weeks and Breanna said she had just found out she had CF and had to go into the hospital. 2 days later at the next class the girl approached Breanna and said "Oh, about your CF, my Mom's friend had a daughter with CF, but she died when she was 16." My daughter was completely devistated as I when she got home. Breanna asked me "Mommie, am I going to die?" I didn't know what to say. I told her that God wouldn't give her CF if he thought she couldn't handle it. I told her that many Scientist/Researchers are working hard everyday to find a cure and CF has come such a long way in the last few years. I said there are beautiful young girls just like her with CF living to be little old ladies (no offense to anyone).

It has been a year and she has been in the hospital 3 times since being diagnosed. Breanna knows enough at this point that her health is the most important thing and what the possibilities are (back into the hospital) if she doesn't take care of herself.

I think it makes a difference when a child is diagnosed. With Breanna she was 9 y/o and had to start living a completely different lifestyle, alot changed for her and the adjustment has been very difficult, so I feel by revealing the extent of CF would be too detrimental. I can't fathom the idea of taking her childhood away and replacing it with fear.

Definetely look into a 504 Plan with the School District and letting it be known to teachers and school staff of what your son does know about it. Really, some people just don't think. I can't believe the mother of the girl in dance class would discuss something like this with her child, kids talk, people talk.

The only advise I can give is the same that I was given and that is to be honest, but conservative, their little souls are fragile.

I hope this helps!,

Take care,<img src="i/expressions/heart.gif" border="0">
Gina
 
G

ginandbrea

New member
Hi!,

Everyone here has given really good advise.

Last year my daughter Breanna was diagnosed at 9 y/o. Immediately she was admitted to the hospital with an FEV1 of 52%. Of course there were all kind of questions she had, but I could not answer them, CF was new to me as well. I spoke with the social worker at Children's Hospital and she advised me to be honest, but conservative.

When Breanna was discharged she went right back to dance class. A girl in her class asked where she had been for the past 2 weeks and Breanna said she had just found out she had CF and had to go into the hospital. 2 days later at the next class the girl approached Breanna and said "Oh, about your CF, my Mom's friend had a daughter with CF, but she died when she was 16." My daughter was completely devistated as I when she got home. Breanna asked me "Mommie, am I going to die?" I didn't know what to say. I told her that God wouldn't give her CF if he thought she couldn't handle it. I told her that many Scientist/Researchers are working hard everyday to find a cure and CF has come such a long way in the last few years. I said there are beautiful young girls just like her with CF living to be little old ladies (no offense to anyone).

It has been a year and she has been in the hospital 3 times since being diagnosed. Breanna knows enough at this point that her health is the most important thing and what the possibilities are (back into the hospital) if she doesn't take care of herself.

I think it makes a difference when a child is diagnosed. With Breanna she was 9 y/o and had to start living a completely different lifestyle, alot changed for her and the adjustment has been very difficult, so I feel by revealing the extent of CF would be too detrimental. I can't fathom the idea of taking her childhood away and replacing it with fear.

Definetely look into a 504 Plan with the School District and letting it be known to teachers and school staff of what your son does know about it. Really, some people just don't think. I can't believe the mother of the girl in dance class would discuss something like this with her child, kids talk, people talk.

The only advise I can give is the same that I was given and that is to be honest, but conservative, their little souls are fragile.

I hope this helps!,

Take care,<img src="i/expressions/heart.gif" border="0">
Gina
 
G

ginandbrea

New member
Hi!,

Everyone here has given really good advise.

Last year my daughter Breanna was diagnosed at 9 y/o. Immediately she was admitted to the hospital with an FEV1 of 52%. Of course there were all kind of questions she had, but I could not answer them, CF was new to me as well. I spoke with the social worker at Children's Hospital and she advised me to be honest, but conservative.

When Breanna was discharged she went right back to dance class. A girl in her class asked where she had been for the past 2 weeks and Breanna said she had just found out she had CF and had to go into the hospital. 2 days later at the next class the girl approached Breanna and said "Oh, about your CF, my Mom's friend had a daughter with CF, but she died when she was 16." My daughter was completely devistated as I when she got home. Breanna asked me "Mommie, am I going to die?" I didn't know what to say. I told her that God wouldn't give her CF if he thought she couldn't handle it. I told her that many Scientist/Researchers are working hard everyday to find a cure and CF has come such a long way in the last few years. I said there are beautiful young girls just like her with CF living to be little old ladies (no offense to anyone).

It has been a year and she has been in the hospital 3 times since being diagnosed. Breanna knows enough at this point that her health is the most important thing and what the possibilities are (back into the hospital) if she doesn't take care of herself.

I think it makes a difference when a child is diagnosed. With Breanna she was 9 y/o and had to start living a completely different lifestyle, alot changed for her and the adjustment has been very difficult, so I feel by revealing the extent of CF would be too detrimental. I can't fathom the idea of taking her childhood away and replacing it with fear.

Definetely look into a 504 Plan with the School District and letting it be known to teachers and school staff of what your son does know about it. Really, some people just don't think. I can't believe the mother of the girl in dance class would discuss something like this with her child, kids talk, people talk.

The only advise I can give is the same that I was given and that is to be honest, but conservative, their little souls are fragile.

I hope this helps!,

Take care,<img src="i/expressions/heart.gif" border="0">
Gina
 
G

ginandbrea

New member
Hi!,

Everyone here has given really good advise.

Last year my daughter Breanna was diagnosed at 9 y/o. Immediately she was admitted to the hospital with an FEV1 of 52%. Of course there were all kind of questions she had, but I could not answer them, CF was new to me as well. I spoke with the social worker at Children's Hospital and she advised me to be honest, but conservative.

When Breanna was discharged she went right back to dance class. A girl in her class asked where she had been for the past 2 weeks and Breanna said she had just found out she had CF and had to go into the hospital. 2 days later at the next class the girl approached Breanna and said "Oh, about your CF, my Mom's friend had a daughter with CF, but she died when she was 16." My daughter was completely devistated as I when she got home. Breanna asked me "Mommie, am I going to die?" I didn't know what to say. I told her that God wouldn't give her CF if he thought she couldn't handle it. I told her that many Scientist/Researchers are working hard everyday to find a cure and CF has come such a long way in the last few years. I said there are beautiful young girls just like her with CF living to be little old ladies (no offense to anyone).

It has been a year and she has been in the hospital 3 times since being diagnosed. Breanna knows enough at this point that her health is the most important thing and what the possibilities are (back into the hospital) if she doesn't take care of herself.

I think it makes a difference when a child is diagnosed. With Breanna she was 9 y/o and had to start living a completely different lifestyle, alot changed for her and the adjustment has been very difficult, so I feel by revealing the extent of CF would be too detrimental. I can't fathom the idea of taking her childhood away and replacing it with fear.

Definetely look into a 504 Plan with the School District and letting it be known to teachers and school staff of what your son does know about it. Really, some people just don't think. I can't believe the mother of the girl in dance class would discuss something like this with her child, kids talk, people talk.

The only advise I can give is the same that I was given and that is to be honest, but conservative, their little souls are fragile.

I hope this helps!,

Take care,<img src="i/expressions/heart.gif" border="0">
Gina
 
G

ginandbrea

New member
Hi!,
<br />
<br />Everyone here has given really good advise.
<br />
<br />Last year my daughter Breanna was diagnosed at 9 y/o. Immediately she was admitted to the hospital with an FEV1 of 52%. Of course there were all kind of questions she had, but I could not answer them, CF was new to me as well. I spoke with the social worker at Children's Hospital and she advised me to be honest, but conservative.
<br />
<br />When Breanna was discharged she went right back to dance class. A girl in her class asked where she had been for the past 2 weeks and Breanna said she had just found out she had CF and had to go into the hospital. 2 days later at the next class the girl approached Breanna and said "Oh, about your CF, my Mom's friend had a daughter with CF, but she died when she was 16." My daughter was completely devistated as I when she got home. Breanna asked me "Mommie, am I going to die?" I didn't know what to say. I told her that God wouldn't give her CF if he thought she couldn't handle it. I told her that many Scientist/Researchers are working hard everyday to find a cure and CF has come such a long way in the last few years. I said there are beautiful young girls just like her with CF living to be little old ladies (no offense to anyone).
<br />
<br />It has been a year and she has been in the hospital 3 times since being diagnosed. Breanna knows enough at this point that her health is the most important thing and what the possibilities are (back into the hospital) if she doesn't take care of herself.
<br />
<br />I think it makes a difference when a child is diagnosed. With Breanna she was 9 y/o and had to start living a completely different lifestyle, alot changed for her and the adjustment has been very difficult, so I feel by revealing the extent of CF would be too detrimental. I can't fathom the idea of taking her childhood away and replacing it with fear.
<br />
<br />Definetely look into a 504 Plan with the School District and letting it be known to teachers and school staff of what your son does know about it. Really, some people just don't think. I can't believe the mother of the girl in dance class would discuss something like this with her child, kids talk, people talk.
<br />
<br />The only advise I can give is the same that I was given and that is to be honest, but conservative, their little souls are fragile.
<br />
<br />I hope this helps!,
<br />
<br />Take care,<img src="i/expressions/heart.gif" border="0">
<br />Gina
 
M

mellybean17

New member
I was diagnosed a like 2 months, and I just always knew. I think you should tell him. CF is a scary thing for anyone, however keeping him from knowing isn't going to protect him. I'd tell him, and make sure he understands everything, maybe not about life expectancy but just other things, like how he might be a little smaller than other kids, and he might get sick more often. Idk, Im glad that I knew at an early age, because it kinda matured me and made me smarter.
 
M

mellybean17

New member
I was diagnosed a like 2 months, and I just always knew. I think you should tell him. CF is a scary thing for anyone, however keeping him from knowing isn't going to protect him. I'd tell him, and make sure he understands everything, maybe not about life expectancy but just other things, like how he might be a little smaller than other kids, and he might get sick more often. Idk, Im glad that I knew at an early age, because it kinda matured me and made me smarter.
 
M

mellybean17

New member
I was diagnosed a like 2 months, and I just always knew. I think you should tell him. CF is a scary thing for anyone, however keeping him from knowing isn't going to protect him. I'd tell him, and make sure he understands everything, maybe not about life expectancy but just other things, like how he might be a little smaller than other kids, and he might get sick more often. Idk, Im glad that I knew at an early age, because it kinda matured me and made me smarter.
 
M

mellybean17

New member
I was diagnosed a like 2 months, and I just always knew. I think you should tell him. CF is a scary thing for anyone, however keeping him from knowing isn't going to protect him. I'd tell him, and make sure he understands everything, maybe not about life expectancy but just other things, like how he might be a little smaller than other kids, and he might get sick more often. Idk, Im glad that I knew at an early age, because it kinda matured me and made me smarter.
 
M

mellybean17

New member
I was diagnosed a like 2 months, and I just always knew. I think you should tell him. CF is a scary thing for anyone, however keeping him from knowing isn't going to protect him. I'd tell him, and make sure he understands everything, maybe not about life expectancy but just other things, like how he might be a little smaller than other kids, and he might get sick more often. Idk, Im glad that I knew at an early age, because it kinda matured me and made me smarter.
 
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