advice on giving others advice

[anonymous]

Hi,

There's this man who is related to my husband through marriage, and he and his wife and kids are very close to our families. He had children 5 yrs ago, and all we knew was that it was very difficult for them to conceive at the time, and had to go through IVF and other treatments to do so.

So about a yr ago, he started to have all these lung related health problems. He went to his general family doctor, and was DX with brochiectasis..I hope i'm spelling that right. Anyway, he has so many of the charachteristic CF-type stuff. He is healthy looking, but thin, raspy voice, constant harsh cough. And we just found out that he was born without Vas Deferens.

I tried suggesting he go to a CF specialist just to talk and gave him the number of mine, but he really didn't follow through. His family doctor, who I can tell obviously knows little or nothing about CF, did the genetic testing, and this is what he said-"you have the genetic mutations, but you're just a carrier." I said to my friend, what's that supposed to mean? , and he just kind of accepts whatever this doctor tells him. He's sick all the time, coughs all the time. But the problem is, he won't dig deeper. Like with the cf testing results, he couldn't even explain them to me! I pointed this out, and he just says, well if I had it my doctor would have told me. The other thing is, his little son is exhibiting some similar signs. The coughing, low immune system, ect. At the least, he's probably a carrier.

I'm trying to figure out how I can respectfully point out that he should see a CF doctor, or at least a good lung specialist. The problem is, he's about 35, so he's older than me. And I don't want to come off as a young punk, sticking my nose in his buisness. We're not that close to him, just our families are. Like I mentioned, I've tried more subtle things. I gave the number of my doctor, and gave him a little info on CF. To be honest, they are almost like the types of people that are so afraid of having CF, they don't want to know.

Any suggestions?

Christian

 

[anonymous]

Hi,

There's this man who is related to my husband through marriage, and he and his wife and kids are very close to our families. He had children 5 yrs ago, and all we knew was that it was very difficult for them to conceive at the time, and had to go through IVF and other treatments to do so.

So about a yr ago, he started to have all these lung related health problems. He went to his general family doctor, and was DX with brochiectasis..I hope i'm spelling that right. Anyway, he has so many of the charachteristic CF-type stuff. He is healthy looking, but thin, raspy voice, constant harsh cough. And we just found out that he was born without Vas Deferens.

I tried suggesting he go to a CF specialist just to talk and gave him the number of mine, but he really didn't follow through. His family doctor, who I can tell obviously knows little or nothing about CF, did the genetic testing, and this is what he said-"you have the genetic mutations, but you're just a carrier." I said to my friend, what's that supposed to mean? , and he just kind of accepts whatever this doctor tells him. He's sick all the time, coughs all the time. But the problem is, he won't dig deeper. Like with the cf testing results, he couldn't even explain them to me! I pointed this out, and he just says, well if I had it my doctor would have told me. The other thing is, his little son is exhibiting some similar signs. The coughing, low immune system, ect. At the least, he's probably a carrier.

I'm trying to figure out how I can respectfully point out that he should see a CF doctor, or at least a good lung specialist. The problem is, he's about 35, so he's older than me. And I don't want to come off as a young punk, sticking my nose in his buisness. We're not that close to him, just our families are. Like I mentioned, I've tried more subtle things. I gave the number of my doctor, and gave him a little info on CF. To be honest, they are almost like the types of people that are so afraid of having CF, they don't want to know.

Any suggestions?

Christian

 

[Emily65Roses]

You could always try the "if you don't do it for yourself, would you at least check into it <b>CAREFULLY</b> for your son's health??"

 

[Emily65Roses]

You could always try the "if you don't do it for yourself, would you at least check into it <b>CAREFULLY</b> for your son's health??"

 

[anonymous]

You might have done what you can already - at least for the adult. There is a point at which it is his decision on what he wants to know about his own health - and it's also entirely possible he does have CF and knows it and prefers not to discuss it. You might have to ask yourself why you are not satisfied with his response and if his reluctance is arguably causing harm to others. Which is where the question of the son comes in, I suppose. I think there may be a bit more justification for being pushy about the child since he is clearly too young to make informed decisions for himself. So how to be pushy about the health of someone else's child? I'm lousy at family trees, but is the Dad married to your Dad's sister or cousin - someone you might have better luck convincing. You might also want to make sure Dad and Mom understand the basics of genetics: 2 mutations = CF; 1 mutation = carrier. Good luck.

 

[anonymous]

You might have done what you can already - at least for the adult. There is a point at which it is his decision on what he wants to know about his own health - and it's also entirely possible he does have CF and knows it and prefers not to discuss it. You might have to ask yourself why you are not satisfied with his response and if his reluctance is arguably causing harm to others. Which is where the question of the son comes in, I suppose. I think there may be a bit more justification for being pushy about the child since he is clearly too young to make informed decisions for himself. So how to be pushy about the health of someone else's child? I'm lousy at family trees, but is the Dad married to your Dad's sister or cousin - someone you might have better luck convincing. You might also want to make sure Dad and Mom understand the basics of genetics: 2 mutations = CF; 1 mutation = carrier. Good luck.

 

[EnergyGal]

This is my view point. Not everyone tells the truth about their health for many personal reasons. This man could already know he has CF but he is playing dumb because he does not want a crowd of people concerned about him.

 

[EnergyGal]

This is my view point. Not everyone tells the truth about their health for many personal reasons. This man could already know he has CF but he is playing dumb because he does not want a crowd of people concerned about him.

 

[anonymous]

I work with a lady whose son has CF symptoms and she once told me that she can't stand one of the pediatric specialists at the clinic (whose husband is the CF pulmonologist) 'cuz she suggested that they have their son tested for "cerebral fibrosis" -- I knew she meant CF. She said she and her husband were sooooo angry that they just walked out and never returned. So they basically refused to have their son tested -- meanwhile he's got tons of health issues.

I think back when DS was diagnosed or the possibility was first discussed -- I was so angry because it couldn't be possible. And doctors are so "great" about dropping the ball when it comes to a diagnosis. Three or four doctors said they thought it was CF, but then no follow up. Just walked out after saying that was what they thought it was. Okay, all I knew was what I'd seen no some of those dramatic movie of the week episodes.

You've had your say. Unless you can think of anything new to add to tell this person, it doesn't sound like he's interested in hearing what you've had to say. I could just smack that lady at work when I think about the damage that her child is going thru, but I've tried --- I've told her about some of our experiences, told how ds was diagnosed, symptoms -- but it just doesn't seem to pertain to her. Liza

 

[anonymous]

I work with a lady whose son has CF symptoms and she once told me that she can't stand one of the pediatric specialists at the clinic (whose husband is the CF pulmonologist) 'cuz she suggested that they have their son tested for "cerebral fibrosis" -- I knew she meant CF. She said she and her husband were sooooo angry that they just walked out and never returned. So they basically refused to have their son tested -- meanwhile he's got tons of health issues.

I think back when DS was diagnosed or the possibility was first discussed -- I was so angry because it couldn't be possible. And doctors are so "great" about dropping the ball when it comes to a diagnosis. Three or four doctors said they thought it was CF, but then no follow up. Just walked out after saying that was what they thought it was. Okay, all I knew was what I'd seen no some of those dramatic movie of the week episodes.

You've had your say. Unless you can think of anything new to add to tell this person, it doesn't sound like he's interested in hearing what you've had to say. I could just smack that lady at work when I think about the damage that her child is going thru, but I've tried --- I've told her about some of our experiences, told how ds was diagnosed, symptoms -- but it just doesn't seem to pertain to her. Liza

 

[Allie]

I just don't understand how parents can not want to know what's wrong with their child. If anything was up with Ahava health-wise, I'd be demanding they test her for any possibilities so we could treat it as best and as soon as possible.

Maybe he does have Cf and is embarrassed to talk about it, though honestly I don't understand that at all either. If he hasn't been diagnosed though, it's more than likely fairly mild, but what about his son? Doesn't he worry about that?

 

[Allie]

I just don't understand how parents can not want to know what's wrong with their child. If anything was up with Ahava health-wise, I'd be demanding they test her for any possibilities so we could treat it as best and as soon as possible.

Maybe he does have Cf and is embarrassed to talk about it, though honestly I don't understand that at all either. If he hasn't been diagnosed though, it's more than likely fairly mild, but what about his son? Doesn't he worry about that?

 

[EnergyGal]

There are some parents whose child has CF and the parents wait to tell their child when they are already grown up. How this happens, I do not know. The child has to be suspicious as they know they are different. A friend of mine was not told until he was in his teens and he was very angry at his parents for years.
I once was talking to a group of parents who found out their children had cf and one couple asked me if I should tell my child. I said if you do not tell her and wait she might grow up resenting you from keeping a lie. Well a few weeks later, they brought the child into see me and I will never forget the look on that childs face. I was the age of her Mother. I believe it meant the world to her. It was such a special experience that I wrote it and placed this in a keepsake book.

 

[EnergyGal]

There are some parents whose child has CF and the parents wait to tell their child when they are already grown up. How this happens, I do not know. The child has to be suspicious as they know they are different. A friend of mine was not told until he was in his teens and he was very angry at his parents for years.
I once was talking to a group of parents who found out their children had cf and one couple asked me if I should tell my child. I said if you do not tell her and wait she might grow up resenting you from keeping a lie. Well a few weeks later, they brought the child into see me and I will never forget the look on that childs face. I was the age of her Mother. I believe it meant the world to her. It was such a special experience that I wrote it and placed this in a keepsake book.

 

[anonymous]

I have suspected that he may have been dx with it. I'm not saying I'm sure about that. But, he went through this period where he'd ask me all these questions, and even call me. Then, he just stopped and got very shy about the subject. Whether he has it or not, I think the one thing that he's very shy about is that some people know he doesn't have vas deferens. He doesn't know that I know. But I can see why he would be private about that.

He is married to my husband's brother in law's sister. So, you see a very distant relative. But we're all friends b/c we live 5 minutes apart, and are always having picnics together, baby sitting each others kids, and we're all in the same church. So, I can see how he wouldn't want everyone talking about his private health matters.

I have mentioned to others in the family-without going into heavy stuff, or private stuff-that I feel that he should look further into this at least for the sake of his son. And, I get this look like I have two heads. Like-well, why would they want to know? If the kid's helathy now, just let leave it alone and adress it if it becomes a problem. I had my sister in law say to me-"Christian, how can you even think something so terrible. I couldn't even imagine (the little boy) having CF." It's like, well of course I HOPE NOT! But, at least you could do some preventative work! I just don't understand people sometimes!

I was wondering what you'd think of this, though. I am closer to his wife. Do you think it would be ok to talk to her about it? She's very laid back, and easy to talk to. He's more of the stubborn, serious type. I don't think she'd care at all, she'd probably be nothing but grateful. But as a man, do you think he'd feel that that would be disrespectful, or going behnd his back?

Christian

 

[anonymous]

I have suspected that he may have been dx with it. I'm not saying I'm sure about that. But, he went through this period where he'd ask me all these questions, and even call me. Then, he just stopped and got very shy about the subject. Whether he has it or not, I think the one thing that he's very shy about is that some people know he doesn't have vas deferens. He doesn't know that I know. But I can see why he would be private about that.

He is married to my husband's brother in law's sister. So, you see a very distant relative. But we're all friends b/c we live 5 minutes apart, and are always having picnics together, baby sitting each others kids, and we're all in the same church. So, I can see how he wouldn't want everyone talking about his private health matters.

I have mentioned to others in the family-without going into heavy stuff, or private stuff-that I feel that he should look further into this at least for the sake of his son. And, I get this look like I have two heads. Like-well, why would they want to know? If the kid's helathy now, just let leave it alone and adress it if it becomes a problem. I had my sister in law say to me-"Christian, how can you even think something so terrible. I couldn't even imagine (the little boy) having CF." It's like, well of course I HOPE NOT! But, at least you could do some preventative work! I just don't understand people sometimes!

I was wondering what you'd think of this, though. I am closer to his wife. Do you think it would be ok to talk to her about it? She's very laid back, and easy to talk to. He's more of the stubborn, serious type. I don't think she'd care at all, she'd probably be nothing but grateful. But as a man, do you think he'd feel that that would be disrespectful, or going behnd his back?

Christian

 

[Emily65Roses]

Could you talk to them both at the same time? Then you get the laid back-ness of the wife, and you can't be told you were going behind anyone's back.

As for the "why not just leave it alone?" attitude... do they understand what kind of damage can be done if anyone does have CF and just ignores it until it becomes a problem? And that if the little boy has it, and they start him on meds NOW, that he'll live a much longer and healthier life? Be sure to make that clear. That would shut anyone (with common sense) up.

 

[Emily65Roses]

Could you talk to them both at the same time? Then you get the laid back-ness of the wife, and you can't be told you were going behind anyone's back.

As for the "why not just leave it alone?" attitude... do they understand what kind of damage can be done if anyone does have CF and just ignores it until it becomes a problem? And that if the little boy has it, and they start him on meds NOW, that he'll live a much longer and healthier life? Be sure to make that clear. That would shut anyone (with common sense) up.

 

[thelizardqueen]

I think a lot of the time people are scared of the unknown. You know, those people that won't go to the doctor because they're afraid of what they may find out. I think he has to want to go and get tested, and dig deeper - you can't force him. As for his son, I would suggest the same as Emily said - tell him that at the very least get his son checked out.

 

[thelizardqueen]

I think a lot of the time people are scared of the unknown. You know, those people that won't go to the doctor because they're afraid of what they may find out. I think he has to want to go and get tested, and dig deeper - you can't force him. As for his son, I would suggest the same as Emily said - tell him that at the very least get his son checked out.