8 yr old son - what to tell him?

brent · Dec 16, 2011

Hi, it's me again. I posted a question here a couple of weeks ago about my son with the missing vas deferens and you guys were really helpful so I thought I'd put another one to you. Apologies for the long post.
What do you reckon we should tell him?
We did the sweat test at the hospital yesterday and now WE'RE sweating on the results (ha! I'm funny, aren't I?) because it's been 24 hours and no-one's contacted us. Anyway. I honestly think it's going to come back positive because of his missing vas and just a lot of other physical traits and problems he has.
If it comes back positive we're wondering what to tell him? He's 8 years old, a bright kid but he's got a touch of asberger's - if there's a scale of 1-10 he might be a 1.5, but it's in there - so we don't like to be ambiguous. Like a lot of people he's more comfortable with certainty, and knowing what's going on.
The trouble is that apparently my sister has told at least one of my mother's friends. My wife and I have told a few very close friends, people who we need for our own support. Who have my parents talked about it to? And them? The very worst outcome I can imagine is that he hears that he has cystic fibrosis (if he does, I still obviously have hope that he doesn't) from someone else.
One of my wife's friends contacted me on facebook (she was probably drunk) and demanded that we tell him now so that he can start coming to terms with his imminent death, which I told her would be an evil thing to do to an 8 yr old boy, and then I told her some other things that involved me swearing at her and then me discontinuing that conversation. Neither of us slept that night, and to be honest I downed a bottle of red wine last night to help me sleep (not healthy I know, but I don't usually do that sort of thing I promise).
If the test comes back positive I'm thinking that we should tell him, and his 7 yr old sister: that he has something called cystic fibrosis, which isn't contagious, but which explains his asthma. It's a very serious condition, so he's lucky to have a mild form of it, but we are all, as a family, going to have to learn about what foods and activities he will have to do from now on, and that he must take his ventolin VERY seriously now and let us know about every little cold and sniffle. And I'll tell him that nothing's changed, he can still be strong and active, I'm still going to teach him rock-climbing and karate, the only thing that's really going to change is that now we know why he gets sick so easily and that the doctors will now know to treat him properly. It isn't anything he needs to tell anyone at school other than his teacher.
How's that?
I think the worst thing we could do is wait for a few years and then tell him that we know why he's sick all the time - even a 10 yr old would be rightfully upset if his parents sat on information like this.
And then I'm going to send an email to the wider family who don't know yet saying that our son has CF, that a test has confirmed it, that he has a mild case, but it is a very serious condition etc etc. I might put in a couple of information links for those interested. Basically the only reason I'd do this is so that I don't have to spend the next 3 years explaining the same story to everyone. I've already had to teach my phone the words deferens and fibrosis and I'm frankly sick of talking about it. I know it's upsetting for people to try to think of something to say to me when I tell them, and that upsets me. I told my parents by sms on the first day because I didn't feel up to telling them in person when they go back from vacation. My wife almost didn't want to go have coffee with one particular friend because she didn't want the time spent with her to be about crying in a café. I'd rather just tell everyone and have them know, I'm not into secrets.

brent · Dec 16, 2011

Hi, it's me again. I posted a question here a couple of weeks ago about my son with the missing vas deferens and you guys were really helpful so I thought I'd put another one to you. Apologies for the long post.
What do you reckon we should tell him?
We did the sweat test at the hospital yesterday and now WE'RE sweating on the results (ha! I'm funny, aren't I?) because it's been 24 hours and no-one's contacted us. Anyway. I honestly think it's going to come back positive because of his missing vas and just a lot of other physical traits and problems he has.
If it comes back positive we're wondering what to tell him? He's 8 years old, a bright kid but he's got a touch of asberger's - if there's a scale of 1-10 he might be a 1.5, but it's in there - so we don't like to be ambiguous. Like a lot of people he's more comfortable with certainty, and knowing what's going on.
The trouble is that apparently my sister has told at least one of my mother's friends. My wife and I have told a few very close friends, people who we need for our own support. Who have my parents talked about it to? And them? The very worst outcome I can imagine is that he hears that he has cystic fibrosis (if he does, I still obviously have hope that he doesn't) from someone else.
One of my wife's friends contacted me on facebook (she was probably drunk) and demanded that we tell him now so that he can start coming to terms with his imminent death, which I told her would be an evil thing to do to an 8 yr old boy, and then I told her some other things that involved me swearing at her and then me discontinuing that conversation. Neither of us slept that night, and to be honest I downed a bottle of red wine last night to help me sleep (not healthy I know, but I don't usually do that sort of thing I promise).
If the test comes back positive I'm thinking that we should tell him, and his 7 yr old sister: that he has something called cystic fibrosis, which isn't contagious, but which explains his asthma. It's a very serious condition, so he's lucky to have a mild form of it, but we are all, as a family, going to have to learn about what foods and activities he will have to do from now on, and that he must take his ventolin VERY seriously now and let us know about every little cold and sniffle. And I'll tell him that nothing's changed, he can still be strong and active, I'm still going to teach him rock-climbing and karate, the only thing that's really going to change is that now we know why he gets sick so easily and that the doctors will now know to treat him properly. It isn't anything he needs to tell anyone at school other than his teacher.
How's that?
I think the worst thing we could do is wait for a few years and then tell him that we know why he's sick all the time - even a 10 yr old would be rightfully upset if his parents sat on information like this.
And then I'm going to send an email to the wider family who don't know yet saying that our son has CF, that a test has confirmed it, that he has a mild case, but it is a very serious condition etc etc. I might put in a couple of information links for those interested. Basically the only reason I'd do this is so that I don't have to spend the next 3 years explaining the same story to everyone. I've already had to teach my phone the words deferens and fibrosis and I'm frankly sick of talking about it. I know it's upsetting for people to try to think of something to say to me when I tell them, and that upsets me. I told my parents by sms on the first day because I didn't feel up to telling them in person when they go back from vacation. My wife almost didn't want to go have coffee with one particular friend because she didn't want the time spent with her to be about crying in a café. I'd rather just tell everyone and have them know, I'm not into secrets.

Rebjane · Dec 16, 2011

This is a tough one. Personally, I would not tell my 8 year old until you have a definitive Cystic Fibrosis diagnosis. The "friend " on facebook was way out of line. It may be that she is not the friend your wife thought she was. Something like CF can show who your TRUE friends are.

People have said some CRAZY stuff to me, friends and family. Some of it comes from ignorance...I have learned over the years to have a tough skin and I know who I can depend on for moral support.

My daughter knew she had CF since she was born, so it's different. It's all she's ever known. I did make a few family phone calls, more to let my cousins know that they could be carriers than anything else. I feel knowledge is power. Some did not want the knowledge, so be ready for that. Things will keep coming up, I tend to explain for the layperson alot. Most people do not know alot about CF and/or their info is antiquated.

As for your son, Do you have a social worker/child life specialist at the CF center? I have never had a "sit down" with my daughter. As she matures and things come up I explain it matter of factly and honestly. She knows she has CF but she also knows I expect ALOT from her. I expect good grades, good behavior, and for her to take good care of herself. This is a process over time.

I don't know how Aspergers affects your son in his understanding of CF but kids take YOUR lead. If you are freaking out and nervous the kids pick up on that. If you are matter of fact and in control, the kid will feel it. (BTW feel free to freak out by yourself where noone can see, just not in front of the kids)

Hope your kiddo does not have CF. It's great to have this message board, as I am sure there is someone here that has gone through this,

Rebjane · Dec 16, 2011

This is a tough one. Personally, I would not tell my 8 year old until you have a definitive Cystic Fibrosis diagnosis. The "friend " on facebook was way out of line. It may be that she is not the friend your wife thought she was. Something like CF can show who your TRUE friends are.

People have said some CRAZY stuff to me, friends and family. Some of it comes from ignorance...I have learned over the years to have a tough skin and I know who I can depend on for moral support.

My daughter knew she had CF since she was born, so it's different. It's all she's ever known. I did make a few family phone calls, more to let my cousins know that they could be carriers than anything else. I feel knowledge is power. Some did not want the knowledge, so be ready for that. Things will keep coming up, I tend to explain for the layperson alot. Most people do not know alot about CF and/or their info is antiquated.

As for your son, Do you have a social worker/child life specialist at the CF center? I have never had a "sit down" with my daughter. As she matures and things come up I explain it matter of factly and honestly. She knows she has CF but she also knows I expect ALOT from her. I expect good grades, good behavior, and for her to take good care of herself. This is a process over time.

I don't know how Aspergers affects your son in his understanding of CF but kids take YOUR lead. If you are freaking out and nervous the kids pick up on that. If you are matter of fact and in control, the kid will feel it. (BTW feel free to freak out by yourself where noone can see, just not in front of the kids)

Hope your kiddo does not have CF. It's great to have this message board, as I am sure there is someone here that has gone through this,

Ratatosk · Dec 16, 2011

DS is 8 and was also diagnosed shortly after he was born. He knows he has cf, knows he has to take enzymes, do cpt/vest treatments and nebs to keep his lungs healthy, but he really hasn't asked much about it and we've been fortunate in that he's been relatively healthy. He's active in school, sports, etc. For the most part we have a routine and most people forget that he even has CF.

When issues come up -- colds, tummy problems we get a bit more serious, worry a bit more, but that's our job as parents. DS' job is to be a child and to have fun, not worry!

There are a couple relatives who treat him differently, but those people really haven't taken the time to spend time getting to know him or know about CF. We have one who trys to use it for attention, the "I have a poor sickly ___ (relative), feel sorry for me", yet they don't bother to attend any CFF fundraising events. They did once, but they felt they didn't get enough attention. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ratatosk · Dec 16, 2011

DS is 8 and was also diagnosed shortly after he was born. He knows he has cf, knows he has to take enzymes, do cpt/vest treatments and nebs to keep his lungs healthy, but he really hasn't asked much about it and we've been fortunate in that he's been relatively healthy. He's active in school, sports, etc. For the most part we have a routine and most people forget that he even has CF.

When issues come up -- colds, tummy problems we get a bit more serious, worry a bit more, but that's our job as parents. DS' job is to be a child and to have fun, not worry!

There are a couple relatives who treat him differently, but those people really haven't taken the time to spend time getting to know him or know about CF. We have one who trys to use it for attention, the "I have a poor sickly ___ (relative), feel sorry for me", yet they don't bother to attend any CFF fundraising events. They did once, but they felt they didn't get enough attention. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Printer · Dec 16, 2011

OK first slow down. You don't ever know for sure that DS has CF. At this point in time too many people know your private business as it is. Second CF is not a death sentence and there is no "imminent death".

I understand that you and your wife are scared but don't let that control your decision making.

I really hope that your son is being seen at an APPROVED CF CENTER.

You don't tell your son everything about sex. You only tell him what is age appropiate and what he can understand. I would suggest that you use the same standard in teaching him about CF.

One last thing, people tend to Google CF to get their information. Google is FULL of misinformation (or outdated info) on CF. Contact the Cystic Fibrosis Foundation and request brochures that you can give to family members.

Good luck,
Bill

Printer · Dec 16, 2011

OK first slow down. You don't ever know for sure that DS has CF. At this point in time too many people know your private business as it is. Second CF is not a death sentence and there is no "imminent death".

I understand that you and your wife are scared but don't let that control your decision making.

I really hope that your son is being seen at an APPROVED CF CENTER.

You don't tell your son everything about sex. You only tell him what is age appropiate and what he can understand. I would suggest that you use the same standard in teaching him about CF.

One last thing, people tend to Google CF to get their information. Google is FULL of misinformation (or outdated info) on CF. Contact the Cystic Fibrosis Foundation and request brochures that you can give to family members.

Good luck,
Bill

jessykt · Dec 16, 2011

If the test comes back positive, tell your son. Be appropriate with words and information based on his age and level of understanding. Tell him what treatments are, the medications, etc. and why they are important--no one likes to do something just because they are told to do it, just explain it to him.

One thing that my parents did when I was about 8 is something that I hope NO parent will ever do to their CF child at such a young age: they had me watch a movie about a girl who had CF, in the hospital, and at age 10 she died from a collapsed lung. I was traumatized. I am 33 now, and every birthday I am grateful for another year past 10. That is the type of thing NOT to do with your son.

As for handling other people, you'll have to not only figure out how YOU are going to deal with it, but also teach your son how HE is going to handle it. I get comments all the time when I cough: are you sick? Can I get you some water? Some days I just say I have CF and cough all the time, it's normal. Other times I am extremely annoyed, say I'm fine, quite curtly, and leave. It changes with how I am feeling. But trying to teach him how to handle it is something you should take some time to sort out.

People do get misinformation and it is annoying. I would send out the CF Foundation website. You might include in the email that you would appreciate some time and space to process this and in the future (when you know more and have concrete examples of living with CF) you would be open to sharing with others and answering questions. Ask people to respect this time of transition in your family's life.

There should be a social worker on hand at your CF center that could help with support and resources for all of you. If not, find a therapist who specializes in trauma/life changes. It sounds like you and your wife could use some professional feedback on how to handle the situation. Not to say that friends and family can't help, but someone who is familiar with handling a diagnosis as such could really help sort through all these feelings and questions on how to handle this.

jessykt · Dec 16, 2011

If the test comes back positive, tell your son. Be appropriate with words and information based on his age and level of understanding. Tell him what treatments are, the medications, etc. and why they are important--no one likes to do something just because they are told to do it, just explain it to him.

One thing that my parents did when I was about 8 is something that I hope NO parent will ever do to their CF child at such a young age: they had me watch a movie about a girl who had CF, in the hospital, and at age 10 she died from a collapsed lung. I was traumatized. I am 33 now, and every birthday I am grateful for another year past 10. That is the type of thing NOT to do with your son.

As for handling other people, you'll have to not only figure out how YOU are going to deal with it, but also teach your son how HE is going to handle it. I get comments all the time when I cough: are you sick? Can I get you some water? Some days I just say I have CF and cough all the time, it's normal. Other times I am extremely annoyed, say I'm fine, quite curtly, and leave. It changes with how I am feeling. But trying to teach him how to handle it is something you should take some time to sort out.

People do get misinformation and it is annoying. I would send out the CF Foundation website. You might include in the email that you would appreciate some time and space to process this and in the future (when you know more and have concrete examples of living with CF) you would be open to sharing with others and answering questions. Ask people to respect this time of transition in your family's life.

There should be a social worker on hand at your CF center that could help with support and resources for all of you. If not, find a therapist who specializes in trauma/life changes. It sounds like you and your wife could use some professional feedback on how to handle the situation. Not to say that friends and family can't help, but someone who is familiar with handling a diagnosis as such could really help sort through all these feelings and questions on how to handle this.

Jet · Dec 16, 2011

I agree with the others, you need to wait until the test results are back. If it is positive be age appropriate with him. let the CF Center help you. They have people and resources to help the whole family. I'd stay away from the drama whenever possible. As he gets older there will be ups and downs but thats true with any kid. I have two non-cf kids, and they have bad days too.

Also you can see from this site that there are a lot of adult patients now. it was very different when I was a kid. I can't remember being younger than the average life expectancy. Eventually I never thought about it though. At 8 years old 20 something sounds really old. So I'd tell him what he needs to know and then start getting into a routine.

Jet · Dec 16, 2011

I agree with the others, you need to wait until the test results are back. If it is positive be age appropriate with him. let the CF Center help you. They have people and resources to help the whole family. I'd stay away from the drama whenever possible. As he gets older there will be ups and downs but thats true with any kid. I have two non-cf kids, and they have bad days too.

Also you can see from this site that there are a lot of adult patients now. it was very different when I was a kid. I can't remember being younger than the average life expectancy. Eventually I never thought about it though. At 8 years old 20 something sounds really old. So I'd tell him what he needs to know and then start getting into a routine.

drdanika · Dec 18, 2011

Hi Brent,

This is really tough. We just went through all of this. My Daughter is four and she was just diagnosed a couple months ago. We struggled for a day or two about what to tell her, but knew we had to tell her something because we were admitted to the hospital. Really, she took it way better then us. There are a couple cartoons on youtube. They are aimed at a younger kids then your son, but he might like them. We just told her that the doctors were wrong about her having asthma, and that she had cystic fibrosis. We haven't talked at all about life expectancy. We explained why she needs to do her treatments, and are very honest with her about as much as we can be.

As for the family stuff, I think that was harder. I asked my sister, whom I'm really close with to tell a few relatives and friends over the phone. It's just too emotionally draining to repeat over and over again. And wile the support from everyone is great, you are right. It takes too much energy to try to convince everyone that YOU are ok when you obviously are not. I did encourage everyone that I talked to, to spead the word. This helped I think. I did want all the cousins and everyone to know, as some of them recently got married and I feel like they have every right.

I wish you the best of luck. And hold onto some hope for that negative result. I'm not 100% sure, but I think your doc would call you immediately with a positive result. Mine did at least. Push for full genetic workup just in case.

Take care.

C

drdanika · Dec 18, 2011

Hi Brent,

This is really tough. We just went through all of this. My Daughter is four and she was just diagnosed a couple months ago. We struggled for a day or two about what to tell her, but knew we had to tell her something because we were admitted to the hospital. Really, she took it way better then us. There are a couple cartoons on youtube. They are aimed at a younger kids then your son, but he might like them. We just told her that the doctors were wrong about her having asthma, and that she had cystic fibrosis. We haven't talked at all about life expectancy. We explained why she needs to do her treatments, and are very honest with her about as much as we can be.

As for the family stuff, I think that was harder. I asked my sister, whom I'm really close with to tell a few relatives and friends over the phone. It's just too emotionally draining to repeat over and over again. And wile the support from everyone is great, you are right. It takes too much energy to try to convince everyone that YOU are ok when you obviously are not. I did encourage everyone that I talked to, to spead the word. This helped I think. I did want all the cousins and everyone to know, as some of them recently got married and I feel like they have every right.

I wish you the best of luck. And hold onto some hope for that negative result. I'm not 100% sure, but I think your doc would call you immediately with a positive result. Mine did at least. Push for full genetic workup just in case.

Take care.

C

8 yr old son - what to tell him?

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