How important is it that your child KNOWS they have CF?

C

camperscove

New member
Just out of curiosity, does your child know, specifically that they have CF or any other diagnosis?
Last week our 5 year old (with CF and asthma) was asked by a friend why he was flying to Seattle. He told her he was going to the hospital. When she asked what for, he indignantly replied that he has the flu! What? I'm guessing he's thinking of the 2nd flu shot he got in January, but it really got me thinking. We're very honest with him when it comes to all his clinics and meds and all the fun stuff so it's not as if we're hiding something from him. On the other hand, we definitely do not dwell on his diagnosis and live as close to a "normal" life as possible. When he asks when he can be done with enzymes or nebs or "yucky medicine" or vest, I tell him that Dr. Carter and his friends are working on it and will let us know but it may not be until he's as big as daddy.
Any thoughts? Whatever your reply, please, please speak with kindness! My poor heart can't take any mean-ness! :)
 
C

camperscove

New member
Just out of curiosity, does your child know, specifically that they have CF or any other diagnosis?
Last week our 5 year old (with CF and asthma) was asked by a friend why he was flying to Seattle. He told her he was going to the hospital. When she asked what for, he indignantly replied that he has the flu! What? I'm guessing he's thinking of the 2nd flu shot he got in January, but it really got me thinking. We're very honest with him when it comes to all his clinics and meds and all the fun stuff so it's not as if we're hiding something from him. On the other hand, we definitely do not dwell on his diagnosis and live as close to a "normal" life as possible. When he asks when he can be done with enzymes or nebs or "yucky medicine" or vest, I tell him that Dr. Carter and his friends are working on it and will let us know but it may not be until he's as big as daddy.
Any thoughts? Whatever your reply, please, please speak with kindness! My poor heart can't take any mean-ness! :)
 
C

camperscove

New member
Just out of curiosity, does your child know, specifically that they have CF or any other diagnosis?
Last week our 5 year old (with CF and asthma) was asked by a friend why he was flying to Seattle. He told her he was going to the hospital. When she asked what for, he indignantly replied that he has the flu! What? I'm guessing he's thinking of the 2nd flu shot he got in January, but it really got me thinking. We're very honest with him when it comes to all his clinics and meds and all the fun stuff so it's not as if we're hiding something from him. On the other hand, we definitely do not dwell on his diagnosis and live as close to a "normal" life as possible. When he asks when he can be done with enzymes or nebs or "yucky medicine" or vest, I tell him that Dr. Carter and his friends are working on it and will let us know but it may not be until he's as big as daddy.
Any thoughts? Whatever your reply, please, please speak with kindness! My poor heart can't take any mean-ness! :)
 
C

camperscove

New member
Just out of curiosity, does your child know, specifically that they have CF or any other diagnosis?
Last week our 5 year old (with CF and asthma) was asked by a friend why he was flying to Seattle. He told her he was going to the hospital. When she asked what for, he indignantly replied that he has the flu! What? I'm guessing he's thinking of the 2nd flu shot he got in January, but it really got me thinking. We're very honest with him when it comes to all his clinics and meds and all the fun stuff so it's not as if we're hiding something from him. On the other hand, we definitely do not dwell on his diagnosis and live as close to a "normal" life as possible. When he asks when he can be done with enzymes or nebs or "yucky medicine" or vest, I tell him that Dr. Carter and his friends are working on it and will let us know but it may not be until he's as big as daddy.
Any thoughts? Whatever your reply, please, please speak with kindness! My poor heart can't take any mean-ness! :)
 
C

camperscove

New member
Just out of curiosity, does your child know, specifically that they have CF or any other diagnosis?
<br />Last week our 5 year old (with CF and asthma) was asked by a friend why he was flying to Seattle. He told her he was going to the hospital. When she asked what for, he indignantly replied that he has the flu! What? I'm guessing he's thinking of the 2nd flu shot he got in January, but it really got me thinking. We're very honest with him when it comes to all his clinics and meds and all the fun stuff so it's not as if we're hiding something from him. On the other hand, we definitely do not dwell on his diagnosis and live as close to a "normal" life as possible. When he asks when he can be done with enzymes or nebs or "yucky medicine" or vest, I tell him that Dr. Carter and his friends are working on it and will let us know but it may not be until he's as big as daddy.
<br />Any thoughts? Whatever your reply, please, please speak with kindness! My poor heart can't take any mean-ness! :)
 
R

Ratatosk

Administrator
Staff member
DS knows he has CF. He knows he has to take medicine, do vest/cpt/neb treatments, wash his hands, go to the doctor... At this age, does he need to know about life expectancy and all the grim/gory details? When he talks about someday having kids of his own, does he need to know right now at age 6 that he's most likely sterile? I don't believe so. He's a normal little boy who goes to school, is active in sports, but has to do a few extra things each day to try to keep him healthy.

We answer his questions appropriate for his age. We've read Mallory's 65 Roses and other books about CF. He hears us talk about Great Strides and other fundraisers.

We've been fortunate in that besides a rough start and last year's hospitalization for a bowel obstruction, that he hasn't to go in for IVs, etc. But we are well aware of how quickly things can change. IMO, it's our job as parents to worry about the what ifs and let him focus on a "normal" life.
 
R

Ratatosk

Administrator
Staff member
DS knows he has CF. He knows he has to take medicine, do vest/cpt/neb treatments, wash his hands, go to the doctor... At this age, does he need to know about life expectancy and all the grim/gory details? When he talks about someday having kids of his own, does he need to know right now at age 6 that he's most likely sterile? I don't believe so. He's a normal little boy who goes to school, is active in sports, but has to do a few extra things each day to try to keep him healthy.

We answer his questions appropriate for his age. We've read Mallory's 65 Roses and other books about CF. He hears us talk about Great Strides and other fundraisers.

We've been fortunate in that besides a rough start and last year's hospitalization for a bowel obstruction, that he hasn't to go in for IVs, etc. But we are well aware of how quickly things can change. IMO, it's our job as parents to worry about the what ifs and let him focus on a "normal" life.
 
R

Ratatosk

Administrator
Staff member
DS knows he has CF. He knows he has to take medicine, do vest/cpt/neb treatments, wash his hands, go to the doctor... At this age, does he need to know about life expectancy and all the grim/gory details? When he talks about someday having kids of his own, does he need to know right now at age 6 that he's most likely sterile? I don't believe so. He's a normal little boy who goes to school, is active in sports, but has to do a few extra things each day to try to keep him healthy.

We answer his questions appropriate for his age. We've read Mallory's 65 Roses and other books about CF. He hears us talk about Great Strides and other fundraisers.

We've been fortunate in that besides a rough start and last year's hospitalization for a bowel obstruction, that he hasn't to go in for IVs, etc. But we are well aware of how quickly things can change. IMO, it's our job as parents to worry about the what ifs and let him focus on a "normal" life.
 
R

Ratatosk

Administrator
Staff member
DS knows he has CF. He knows he has to take medicine, do vest/cpt/neb treatments, wash his hands, go to the doctor... At this age, does he need to know about life expectancy and all the grim/gory details? When he talks about someday having kids of his own, does he need to know right now at age 6 that he's most likely sterile? I don't believe so. He's a normal little boy who goes to school, is active in sports, but has to do a few extra things each day to try to keep him healthy.

We answer his questions appropriate for his age. We've read Mallory's 65 Roses and other books about CF. He hears us talk about Great Strides and other fundraisers.

We've been fortunate in that besides a rough start and last year's hospitalization for a bowel obstruction, that he hasn't to go in for IVs, etc. But we are well aware of how quickly things can change. IMO, it's our job as parents to worry about the what ifs and let him focus on a "normal" life.
 
R

Ratatosk

Administrator
Staff member
DS knows he has CF. He knows he has to take medicine, do vest/cpt/neb treatments, wash his hands, go to the doctor... At this age, does he need to know about life expectancy and all the grim/gory details? When he talks about someday having kids of his own, does he need to know right now at age 6 that he's most likely sterile? I don't believe so. He's a normal little boy who goes to school, is active in sports, but has to do a few extra things each day to try to keep him healthy.
<br />
<br />We answer his questions appropriate for his age. We've read Mallory's 65 Roses and other books about CF. He hears us talk about Great Strides and other fundraisers.
<br />
<br />We've been fortunate in that besides a rough start and last year's hospitalization for a bowel obstruction, that he hasn't to go in for IVs, etc. But we are well aware of how quickly things can change. IMO, it's our job as parents to worry about the what ifs and let him focus on a "normal" life.
 
L

laulau555

New member
I always knew I had CF and it seems like you are taking the right approach by not dwelling on it but still keeping him informed. It helps in the long run to be accepting of it and it makes it easier for him to explain it to people as he grows up. You should answer his questions honestly but also be positive about it. It's easy for kids to get confused about which sicknesses are which, he probably sees people with the flu in school and assumes that all sicknesses are the flu. I wouldn't dwell on it too much now, again, it sounds like you are taking the right approach!
 
L

laulau555

New member
I always knew I had CF and it seems like you are taking the right approach by not dwelling on it but still keeping him informed. It helps in the long run to be accepting of it and it makes it easier for him to explain it to people as he grows up. You should answer his questions honestly but also be positive about it. It's easy for kids to get confused about which sicknesses are which, he probably sees people with the flu in school and assumes that all sicknesses are the flu. I wouldn't dwell on it too much now, again, it sounds like you are taking the right approach!
 
L

laulau555

New member
I always knew I had CF and it seems like you are taking the right approach by not dwelling on it but still keeping him informed. It helps in the long run to be accepting of it and it makes it easier for him to explain it to people as he grows up. You should answer his questions honestly but also be positive about it. It's easy for kids to get confused about which sicknesses are which, he probably sees people with the flu in school and assumes that all sicknesses are the flu. I wouldn't dwell on it too much now, again, it sounds like you are taking the right approach!
 
L

laulau555

New member
I always knew I had CF and it seems like you are taking the right approach by not dwelling on it but still keeping him informed. It helps in the long run to be accepting of it and it makes it easier for him to explain it to people as he grows up. You should answer his questions honestly but also be positive about it. It's easy for kids to get confused about which sicknesses are which, he probably sees people with the flu in school and assumes that all sicknesses are the flu. I wouldn't dwell on it too much now, again, it sounds like you are taking the right approach!
 
L

laulau555

New member
I always knew I had CF and it seems like you are taking the right approach by not dwelling on it but still keeping him informed. It helps in the long run to be accepting of it and it makes it easier for him to explain it to people as he grows up. You should answer his questions honestly but also be positive about it. It's easy for kids to get confused about which sicknesses are which, he probably sees people with the flu in school and assumes that all sicknesses are the flu. I wouldn't dwell on it too much now, again, it sounds like you are taking the right approach!
 
M

Mommafirst

Guest
Alyssa just turned 4 and has been in the hospital for IVs three times and had a feeding tube placed last year. Because of all these interventions, in addition to the vest and regular meds/treatments, I've spent a lot of time reading her books that talk about CF. I just want it to e a regular part of her life....she has blonde hair, brown eyes and cystic fibrosis. Its part of who she is, but not all of who she is and I don't want it to define her. But I don't want to pretend its not an important part of her life, because a lot of our day is spent doing CF stuff.

Now that she is understanding more, I've been including her in preparing for the walk and we talk about CF all the time. To ME, it is very important that she understands her CF and CF in general, because to me knowledge is power and I feel we can fight better if we have more information.
 
M

Mommafirst

Guest
Alyssa just turned 4 and has been in the hospital for IVs three times and had a feeding tube placed last year. Because of all these interventions, in addition to the vest and regular meds/treatments, I've spent a lot of time reading her books that talk about CF. I just want it to e a regular part of her life....she has blonde hair, brown eyes and cystic fibrosis. Its part of who she is, but not all of who she is and I don't want it to define her. But I don't want to pretend its not an important part of her life, because a lot of our day is spent doing CF stuff.

Now that she is understanding more, I've been including her in preparing for the walk and we talk about CF all the time. To ME, it is very important that she understands her CF and CF in general, because to me knowledge is power and I feel we can fight better if we have more information.
 
M

Mommafirst

Guest
Alyssa just turned 4 and has been in the hospital for IVs three times and had a feeding tube placed last year. Because of all these interventions, in addition to the vest and regular meds/treatments, I've spent a lot of time reading her books that talk about CF. I just want it to e a regular part of her life....she has blonde hair, brown eyes and cystic fibrosis. Its part of who she is, but not all of who she is and I don't want it to define her. But I don't want to pretend its not an important part of her life, because a lot of our day is spent doing CF stuff.

Now that she is understanding more, I've been including her in preparing for the walk and we talk about CF all the time. To ME, it is very important that she understands her CF and CF in general, because to me knowledge is power and I feel we can fight better if we have more information.
 
M

Mommafirst

Guest
Alyssa just turned 4 and has been in the hospital for IVs three times and had a feeding tube placed last year. Because of all these interventions, in addition to the vest and regular meds/treatments, I've spent a lot of time reading her books that talk about CF. I just want it to e a regular part of her life....she has blonde hair, brown eyes and cystic fibrosis. Its part of who she is, but not all of who she is and I don't want it to define her. But I don't want to pretend its not an important part of her life, because a lot of our day is spent doing CF stuff.

Now that she is understanding more, I've been including her in preparing for the walk and we talk about CF all the time. To ME, it is very important that she understands her CF and CF in general, because to me knowledge is power and I feel we can fight better if we have more information.
 
M

Mommafirst

Guest
Alyssa just turned 4 and has been in the hospital for IVs three times and had a feeding tube placed last year. Because of all these interventions, in addition to the vest and regular meds/treatments, I've spent a lot of time reading her books that talk about CF. I just want it to e a regular part of her life....she has blonde hair, brown eyes and cystic fibrosis. Its part of who she is, but not all of who she is and I don't want it to define her. But I don't want to pretend its not an important part of her life, because a lot of our day is spent doing CF stuff.
<br />
<br />Now that she is understanding more, I've been including her in preparing for the walk and we talk about CF all the time. To ME, it is very important that she understands her CF and CF in general, because to me knowledge is power and I feel we can fight better if we have more information.
 
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