What did you tell your children about CF?

[pnhuffman]

I have a 6 year old. I have known him since he was 4 mos. old. His mother was dating my son at the time. (This is not his biological son) He was diagonosed at 7 mos. old. He went to the hospital because he was vomitting profusely. He was diagoned with Arnold Chiari Malformation and hydrocephalus. He had surgery and a shunt was placed in his head. It was touch and go for quite awhile with him. Then he was diagonosed with CF. He had a piece of his colon removed due to the miconeum ileis. She and my son broke up when Austin was 2. They had lived with us. The mother was only 16. She came from a really messed up home. She was not giving him his treatments or any treatments. Basically she was charged with medical neglect. We had taken this child in and have had him since 2003. The doctors could not believe how much he had changed since we had taken him into our home. His weight had increased and his overall health was better.

Now that I have given some background on this child I will ask my question. When and what do you tell your children about CF? When do you think they begin to realize things? I have never really had any problems with him taking his oral meds. But he sure will put up a fight when it comes to the vest and breathing treatments. I even let him watch his favorite cartoons and movies.

He was just hospitalized Jun 18 - July 2 and while doing one of the vest therapy and breathing treatments. He started yelling and said. "Don't think I'm doing this the rest of my life" I just dont know what to tell him or how. Sometimes he seems interested and other times he has no interest in what I am saying.

 

[pnhuffman]

I have a 6 year old. I have known him since he was 4 mos. old. His mother was dating my son at the time. (This is not his biological son) He was diagonosed at 7 mos. old. He went to the hospital because he was vomitting profusely. He was diagoned with Arnold Chiari Malformation and hydrocephalus. He had surgery and a shunt was placed in his head. It was touch and go for quite awhile with him. Then he was diagonosed with CF. He had a piece of his colon removed due to the miconeum ileis. She and my son broke up when Austin was 2. They had lived with us. The mother was only 16. She came from a really messed up home. She was not giving him his treatments or any treatments. Basically she was charged with medical neglect. We had taken this child in and have had him since 2003. The doctors could not believe how much he had changed since we had taken him into our home. His weight had increased and his overall health was better.

Now that I have given some background on this child I will ask my question. When and what do you tell your children about CF? When do you think they begin to realize things? I have never really had any problems with him taking his oral meds. But he sure will put up a fight when it comes to the vest and breathing treatments. I even let him watch his favorite cartoons and movies.

He was just hospitalized Jun 18 - July 2 and while doing one of the vest therapy and breathing treatments. He started yelling and said. "Don't think I'm doing this the rest of my life" I just dont know what to tell him or how. Sometimes he seems interested and other times he has no interest in what I am saying.

 

[pnhuffman]

I have a 6 year old. I have known him since he was 4 mos. old. His mother was dating my son at the time. (This is not his biological son) He was diagonosed at 7 mos. old. He went to the hospital because he was vomitting profusely. He was diagoned with Arnold Chiari Malformation and hydrocephalus. He had surgery and a shunt was placed in his head. It was touch and go for quite awhile with him. Then he was diagonosed with CF. He had a piece of his colon removed due to the miconeum ileis. She and my son broke up when Austin was 2. They had lived with us. The mother was only 16. She came from a really messed up home. She was not giving him his treatments or any treatments. Basically she was charged with medical neglect. We had taken this child in and have had him since 2003. The doctors could not believe how much he had changed since we had taken him into our home. His weight had increased and his overall health was better.

Now that I have given some background on this child I will ask my question. When and what do you tell your children about CF? When do you think they begin to realize things? I have never really had any problems with him taking his oral meds. But he sure will put up a fight when it comes to the vest and breathing treatments. I even let him watch his favorite cartoons and movies.

He was just hospitalized Jun 18 - July 2 and while doing one of the vest therapy and breathing treatments. He started yelling and said. "Don't think I'm doing this the rest of my life" I just dont know what to tell him or how. Sometimes he seems interested and other times he has no interest in what I am saying.

 

[pnhuffman]

I have a 6 year old. I have known him since he was 4 mos. old. His mother was dating my son at the time. (This is not his biological son) He was diagonosed at 7 mos. old. He went to the hospital because he was vomitting profusely. He was diagoned with Arnold Chiari Malformation and hydrocephalus. He had surgery and a shunt was placed in his head. It was touch and go for quite awhile with him. Then he was diagonosed with CF. He had a piece of his colon removed due to the miconeum ileis. She and my son broke up when Austin was 2. They had lived with us. The mother was only 16. She came from a really messed up home. She was not giving him his treatments or any treatments. Basically she was charged with medical neglect. We had taken this child in and have had him since 2003. The doctors could not believe how much he had changed since we had taken him into our home. His weight had increased and his overall health was better.

Now that I have given some background on this child I will ask my question. When and what do you tell your children about CF? When do you think they begin to realize things? I have never really had any problems with him taking his oral meds. But he sure will put up a fight when it comes to the vest and breathing treatments. I even let him watch his favorite cartoons and movies.

He was just hospitalized Jun 18 - July 2 and while doing one of the vest therapy and breathing treatments. He started yelling and said. "Don't think I'm doing this the rest of my life" I just dont know what to tell him or how. Sometimes he seems interested and other times he has no interest in what I am saying.

 

[pnhuffman]

I have a 6 year old. I have known him since he was 4 mos. old. His mother was dating my son at the time. (This is not his biological son) He was diagonosed at 7 mos. old. He went to the hospital because he was vomitting profusely. He was diagoned with Arnold Chiari Malformation and hydrocephalus. He had surgery and a shunt was placed in his head. It was touch and go for quite awhile with him. Then he was diagonosed with CF. He had a piece of his colon removed due to the miconeum ileis. She and my son broke up when Austin was 2. They had lived with us. The mother was only 16. She came from a really messed up home. She was not giving him his treatments or any treatments. Basically she was charged with medical neglect. We had taken this child in and have had him since 2003. The doctors could not believe how much he had changed since we had taken him into our home. His weight had increased and his overall health was better.

Now that I have given some background on this child I will ask my question. When and what do you tell your children about CF? When do you think they begin to realize things? I have never really had any problems with him taking his oral meds. But he sure will put up a fight when it comes to the vest and breathing treatments. I even let him watch his favorite cartoons and movies.

He was just hospitalized Jun 18 - July 2 and while doing one of the vest therapy and breathing treatments. He started yelling and said. "Don't think I'm doing this the rest of my life" I just dont know what to tell him or how. Sometimes he seems interested and other times he has no interest in what I am saying.

 

[pnhuffman]

I have a 6 year old. I have known him since he was 4 mos. old. His mother was dating my son at the time. (This is not his biological son) He was diagonosed at 7 mos. old. He went to the hospital because he was vomitting profusely. He was diagoned with Arnold Chiari Malformation and hydrocephalus. He had surgery and a shunt was placed in his head. It was touch and go for quite awhile with him. Then he was diagonosed with CF. He had a piece of his colon removed due to the miconeum ileis. She and my son broke up when Austin was 2. They had lived with us. The mother was only 16. She came from a really messed up home. She was not giving him his treatments or any treatments. Basically she was charged with medical neglect. We had taken this child in and have had him since 2003. The doctors could not believe how much he had changed since we had taken him into our home. His weight had increased and his overall health was better.

Now that I have given some background on this child I will ask my question. When and what do you tell your children about CF? When do you think they begin to realize things? I have never really had any problems with him taking his oral meds. But he sure will put up a fight when it comes to the vest and breathing treatments. I even let him watch his favorite cartoons and movies.

He was just hospitalized Jun 18 - July 2 and while doing one of the vest therapy and breathing treatments. He started yelling and said. "Don't think I'm doing this the rest of my life" I just dont know what to tell him or how. Sometimes he seems interested and other times he has no interest in what I am saying.

 

[NoExcuses]

I've known since i was about 5-6 years old the whole story about CF.

I had someone I knew die of the disease when I was about 9 or 10. But I knew about death with CF years earlier than that.

I was in charge of explaining CF to my class mates with presentations, etc. form about 1st grade. It was great public speaking experience as well as helped me verbalize what CF what, what my treatments were, and what the whole story was.

take care.

 

[NoExcuses]

I've known since i was about 5-6 years old the whole story about CF.

I had someone I knew die of the disease when I was about 9 or 10. But I knew about death with CF years earlier than that.

I was in charge of explaining CF to my class mates with presentations, etc. form about 1st grade. It was great public speaking experience as well as helped me verbalize what CF what, what my treatments were, and what the whole story was.

take care.

 

[NoExcuses]

I've known since i was about 5-6 years old the whole story about CF.

I had someone I knew die of the disease when I was about 9 or 10. But I knew about death with CF years earlier than that.

I was in charge of explaining CF to my class mates with presentations, etc. form about 1st grade. It was great public speaking experience as well as helped me verbalize what CF what, what my treatments were, and what the whole story was.

take care.

 

[NoExcuses]

I've known since i was about 5-6 years old the whole story about CF.

I had someone I knew die of the disease when I was about 9 or 10. But I knew about death with CF years earlier than that.

I was in charge of explaining CF to my class mates with presentations, etc. form about 1st grade. It was great public speaking experience as well as helped me verbalize what CF what, what my treatments were, and what the whole story was.

take care.

 

[NoExcuses]

I've known since i was about 5-6 years old the whole story about CF.

I had someone I knew die of the disease when I was about 9 or 10. But I knew about death with CF years earlier than that.

I was in charge of explaining CF to my class mates with presentations, etc. form about 1st grade. It was great public speaking experience as well as helped me verbalize what CF what, what my treatments were, and what the whole story was.

take care.

 

[NoExcuses]

I've known since i was about 5-6 years old the whole story about CF.

I had someone I knew die of the disease when I was about 9 or 10. But I knew about death with CF years earlier than that.

I was in charge of explaining CF to my class mates with presentations, etc. form about 1st grade. It was great public speaking experience as well as helped me verbalize what CF what, what my treatments were, and what the whole story was.

take care.

 

[pnhuffman]

It was actually nice when he started preschool beacuse one of the teachers has a daughter with CF she is now 12 . So his teacher of course knew a great deal about it. The kids really were great also with him. If they thought the teachers forgot Austins enzymes they were really quick to tell them they had forgotten.

Kindergarten has been o.k. too. And he really does well with taking his enzymes. But i still have some difficulty in how to explain the disease it self to him. I have received a lot of books from the staff at the CF clinic. But that was a few years ago when he was in the hospital. I probably should dig them out and see if he is interested.

It has been a little scary because when he was in the hospital a young girl that we know lost one of her classmates due to complications of CF. She was 19 and she had a lung transplant about 2 years ago.

 

[pnhuffman]

It was actually nice when he started preschool beacuse one of the teachers has a daughter with CF she is now 12 . So his teacher of course knew a great deal about it. The kids really were great also with him. If they thought the teachers forgot Austins enzymes they were really quick to tell them they had forgotten.

Kindergarten has been o.k. too. And he really does well with taking his enzymes. But i still have some difficulty in how to explain the disease it self to him. I have received a lot of books from the staff at the CF clinic. But that was a few years ago when he was in the hospital. I probably should dig them out and see if he is interested.

It has been a little scary because when he was in the hospital a young girl that we know lost one of her classmates due to complications of CF. She was 19 and she had a lung transplant about 2 years ago.

 

[pnhuffman]

It was actually nice when he started preschool beacuse one of the teachers has a daughter with CF she is now 12 . So his teacher of course knew a great deal about it. The kids really were great also with him. If they thought the teachers forgot Austins enzymes they were really quick to tell them they had forgotten.

Kindergarten has been o.k. too. And he really does well with taking his enzymes. But i still have some difficulty in how to explain the disease it self to him. I have received a lot of books from the staff at the CF clinic. But that was a few years ago when he was in the hospital. I probably should dig them out and see if he is interested.

It has been a little scary because when he was in the hospital a young girl that we know lost one of her classmates due to complications of CF. She was 19 and she had a lung transplant about 2 years ago.

 

[pnhuffman]

It was actually nice when he started preschool beacuse one of the teachers has a daughter with CF she is now 12 . So his teacher of course knew a great deal about it. The kids really were great also with him. If they thought the teachers forgot Austins enzymes they were really quick to tell them they had forgotten.

Kindergarten has been o.k. too. And he really does well with taking his enzymes. But i still have some difficulty in how to explain the disease it self to him. I have received a lot of books from the staff at the CF clinic. But that was a few years ago when he was in the hospital. I probably should dig them out and see if he is interested.

It has been a little scary because when he was in the hospital a young girl that we know lost one of her classmates due to complications of CF. She was 19 and she had a lung transplant about 2 years ago.

 

[pnhuffman]

It was actually nice when he started preschool beacuse one of the teachers has a daughter with CF she is now 12 . So his teacher of course knew a great deal about it. The kids really were great also with him. If they thought the teachers forgot Austins enzymes they were really quick to tell them they had forgotten.

Kindergarten has been o.k. too. And he really does well with taking his enzymes. But i still have some difficulty in how to explain the disease it self to him. I have received a lot of books from the staff at the CF clinic. But that was a few years ago when he was in the hospital. I probably should dig them out and see if he is interested.

It has been a little scary because when he was in the hospital a young girl that we know lost one of her classmates due to complications of CF. She was 19 and she had a lung transplant about 2 years ago.

 

[pnhuffman]

It was actually nice when he started preschool beacuse one of the teachers has a daughter with CF she is now 12 . So his teacher of course knew a great deal about it. The kids really were great also with him. If they thought the teachers forgot Austins enzymes they were really quick to tell them they had forgotten.

Kindergarten has been o.k. too. And he really does well with taking his enzymes. But i still have some difficulty in how to explain the disease it self to him. I have received a lot of books from the staff at the CF clinic. But that was a few years ago when he was in the hospital. I probably should dig them out and see if he is interested.

It has been a little scary because when he was in the hospital a young girl that we know lost one of her classmates due to complications of CF. She was 19 and she had a lung transplant about 2 years ago.

 

[CFHockeyMom]

We've never really sat down and had a talk with Sean about it. We've always just taken every little opportunity to give him information and made him responsible for his treatments/meds as much as possible.

There are a lot of wonderfu "success" stories on here from our adult CFer's. Maybe start by sharing some of those. It will help him know that he's not alone and may sparks some questions.

A lot of parents shy away from answering questions from their young CFer's only to find themselves in a position to have an all encompassing "CF talk" in the not so distant future. I've found it's a lot easier to incorporate honest open discussion in our daily lives. Death is part of life regardless of CF so don't shy away from those opportunities either. Sure, for little ones the details aren't significant but again incorporating these kinds of little lessons now can make things a lot easier later.

 

[CFHockeyMom]

We've never really sat down and had a talk with Sean about it. We've always just taken every little opportunity to give him information and made him responsible for his treatments/meds as much as possible.

There are a lot of wonderfu "success" stories on here from our adult CFer's. Maybe start by sharing some of those. It will help him know that he's not alone and may sparks some questions.

A lot of parents shy away from answering questions from their young CFer's only to find themselves in a position to have an all encompassing "CF talk" in the not so distant future. I've found it's a lot easier to incorporate honest open discussion in our daily lives. Death is part of life regardless of CF so don't shy away from those opportunities either. Sure, for little ones the details aren't significant but again incorporating these kinds of little lessons now can make things a lot easier later.