New To This Site have 8 yr girl w/ CF and healthy have ?'s

[2perfectboys]

Colllin,
that is great, I am a big fan of exerciese, can I ask u what your PFTs are currently and if u do any type of CPTs today
thanks
Lori

 

[thefrogprincess]

The biggest thing that I am greatful to my parents for is that they never EVER hid the fact the CF is fatal from me and my brother. It is imperative that you tell you daughter! She has a right to know. If it would help you go with her to a genetic councilor. They can help you both understand the facts and that the harder she works to stay healthy the longer she will live. I am pleading with you to tell her, trust me, you don't want her finding out on her own somehow. You set an example for her and one of the most important lessons you can teach her is honesty.

 

[thefrogprincess]

The biggest thing that I am greatful to my parents for is that they never EVER hid the fact the CF is fatal from me and my brother. It is imperative that you tell you daughter! She has a right to know. If it would help you go with her to a genetic councilor. They can help you both understand the facts and that the harder she works to stay healthy the longer she will live. I am pleading with you to tell her, trust me, you don't want her finding out on her own somehow. You set an example for her and one of the most important lessons you can teach her is honesty.

 

[thefrogprincess]

The biggest thing that I am greatful to my parents for is that they never EVER hid the fact the CF is fatal from me and my brother. It is imperative that you tell you daughter! She has a right to know. If it would help you go with her to a genetic councilor. They can help you both understand the facts and that the harder she works to stay healthy the longer she will live. I am pleading with you to tell her, trust me, you don't want her finding out on her own somehow. You set an example for her and one of the most important lessons you can teach her is honesty.

 

[Allie]

Jessi, everyone who knows me knows I agree with you, but thank you for saying it! More people believe it coming from someone with CF. Ry's parents never lied to him either, or hid it, and he respected them so much for it.

I know from having to tell Ahava that her Dad's disease was fatal that it is harder for the parent than the kid.

 

[Allie]

Jessi, everyone who knows me knows I agree with you, but thank you for saying it! More people believe it coming from someone with CF. Ry's parents never lied to him either, or hid it, and he respected them so much for it.

I know from having to tell Ahava that her Dad's disease was fatal that it is harder for the parent than the kid.

 

[Allie]

Jessi, everyone who knows me knows I agree with you, but thank you for saying it! More people believe it coming from someone with CF. Ry's parents never lied to him either, or hid it, and he respected them so much for it.

I know from having to tell Ahava that her Dad's disease was fatal that it is harder for the parent than the kid.

 

[NoExcuses]

I just want to echo what everyone has said - you need to be up front regarding every aspect of CF. Even the healthiest CFers decline at some point and your daughter needs to be aware of what is involved in this disease.

Education can be such a powerful tool for fighting this disease!

 

[NoExcuses]

I just want to echo what everyone has said - you need to be up front regarding every aspect of CF. Even the healthiest CFers decline at some point and your daughter needs to be aware of what is involved in this disease.

Education can be such a powerful tool for fighting this disease!

 

[NoExcuses]

I just want to echo what everyone has said - you need to be up front regarding every aspect of CF. Even the healthiest CFers decline at some point and your daughter needs to be aware of what is involved in this disease.

Education can be such a powerful tool for fighting this disease!

 

[2perfectboys]

Being upfront and honest with your child is one thing, but scaring the sh$t out of them and tell them they will probably die before all their friends and only has a 50% chance of making it to 36 is another. Never lie, but there are some things that are not age appropriate, and 8 is not unless they are mature and ask about the subject, then I think it is okay to talk to them about it. Don't steal all their childhood, guess some of u people would just assume Santa was dead also. We are all going to die, but for a child to think everyday they are probably going to die very young is a hard mind game for them to swallow. I think when the time is right for each child individually then it should be openly discussed with all the improvements and hope that is out there for a person with CF. Don't put stop sticks on a person before they ever get out of the gate. I heard people say, well when I was young I did this and that, cause I was told I would never live passs 18 or whatever, come on, now of us know how long we are going to live. My child could die at 10 from an accident or serious infection or he could live to be the oldest Cf person in history. Being positive is not living in a fairy tale land.

 

[2perfectboys]

Being upfront and honest with your child is one thing, but scaring the sh$t out of them and tell them they will probably die before all their friends and only has a 50% chance of making it to 36 is another. Never lie, but there are some things that are not age appropriate, and 8 is not unless they are mature and ask about the subject, then I think it is okay to talk to them about it. Don't steal all their childhood, guess some of u people would just assume Santa was dead also. We are all going to die, but for a child to think everyday they are probably going to die very young is a hard mind game for them to swallow. I think when the time is right for each child individually then it should be openly discussed with all the improvements and hope that is out there for a person with CF. Don't put stop sticks on a person before they ever get out of the gate. I heard people say, well when I was young I did this and that, cause I was told I would never live passs 18 or whatever, come on, now of us know how long we are going to live. My child could die at 10 from an accident or serious infection or he could live to be the oldest Cf person in history. Being positive is not living in a fairy tale land.

 

[2perfectboys]

Being upfront and honest with your child is one thing, but scaring the sh$t out of them and tell them they will probably die before all their friends and only has a 50% chance of making it to 36 is another. Never lie, but there are some things that are not age appropriate, and 8 is not unless they are mature and ask about the subject, then I think it is okay to talk to them about it. Don't steal all their childhood, guess some of u people would just assume Santa was dead also. We are all going to die, but for a child to think everyday they are probably going to die very young is a hard mind game for them to swallow. I think when the time is right for each child individually then it should be openly discussed with all the improvements and hope that is out there for a person with CF. Don't put stop sticks on a person before they ever get out of the gate. I heard people say, well when I was young I did this and that, cause I was told I would never live passs 18 or whatever, come on, now of us know how long we are going to live. My child could die at 10 from an accident or serious infection or he could live to be the oldest Cf person in history. Being positive is not living in a fairy tale land.

 

[MYBOY]

Hi I am a mother of a 9 year old cf boy too. I can see both sides of telling our children and not telling them till they are a little older. My son was diagnosed at 6 months of age. He has been doing albuteral treatments and percussion since then. We never really flat out told him that he was going to die early - he knew that he had CF and could get sicker and would have to do the treatments for ever. It wasn't til about 6 months ago when I got the vest for him that he came to me that night kinda freaked out and asked if he was going to die. I told him that with cf yes you will probably die before you are old but I made sure he knew the importance of these treatments and to exercise and stay positive and just worry about the things that are important to him. BUT I know that my son is one that would sit and WORRY about dying if we talked about it TOO much. We also talked about how some young healthy people die everyday and he should be happy that he can play sports, walk etc and look normal! Which made him feel better! I don't in any way hide it from him - but I guess we don't dwell on it either - it wouldn't be healthy for any of us. But that's just my family and what's best. He is so sweet that he even has cried for a boy in his class with MD that is stuck in a wheel chair - what a big heart!!

 

[MYBOY]

Hi I am a mother of a 9 year old cf boy too. I can see both sides of telling our children and not telling them till they are a little older. My son was diagnosed at 6 months of age. He has been doing albuteral treatments and percussion since then. We never really flat out told him that he was going to die early - he knew that he had CF and could get sicker and would have to do the treatments for ever. It wasn't til about 6 months ago when I got the vest for him that he came to me that night kinda freaked out and asked if he was going to die. I told him that with cf yes you will probably die before you are old but I made sure he knew the importance of these treatments and to exercise and stay positive and just worry about the things that are important to him. BUT I know that my son is one that would sit and WORRY about dying if we talked about it TOO much. We also talked about how some young healthy people die everyday and he should be happy that he can play sports, walk etc and look normal! Which made him feel better! I don't in any way hide it from him - but I guess we don't dwell on it either - it wouldn't be healthy for any of us. But that's just my family and what's best. He is so sweet that he even has cried for a boy in his class with MD that is stuck in a wheel chair - what a big heart!!

 

[MYBOY]

Hi I am a mother of a 9 year old cf boy too. I can see both sides of telling our children and not telling them till they are a little older. My son was diagnosed at 6 months of age. He has been doing albuteral treatments and percussion since then. We never really flat out told him that he was going to die early - he knew that he had CF and could get sicker and would have to do the treatments for ever. It wasn't til about 6 months ago when I got the vest for him that he came to me that night kinda freaked out and asked if he was going to die. I told him that with cf yes you will probably die before you are old but I made sure he knew the importance of these treatments and to exercise and stay positive and just worry about the things that are important to him. BUT I know that my son is one that would sit and WORRY about dying if we talked about it TOO much. We also talked about how some young healthy people die everyday and he should be happy that he can play sports, walk etc and look normal! Which made him feel better! I don't in any way hide it from him - but I guess we don't dwell on it either - it wouldn't be healthy for any of us. But that's just my family and what's best. He is so sweet that he even has cried for a boy in his class with MD that is stuck in a wheel chair - what a big heart!!