Discussion w/children

[vinsmom]

I am new to this website and noticed that a lot of you have children my son's age and a lot w/teenagers. My son has never had any issues with his meds up until recently. He's mad, angry and says things like "I hate my life, I hate CF, I hate taking meds....mommy, when are they going to find a cure?" We've taken him to child life at our clinic and are working through these issues but I was wondering at what age did most of you find out or tell your children about the realities of the disease. I think he's obviously way too young to carry that burden right now, but I know it's not in the too far future.

Thanks
Vin's mom

 

[tiregrl19]

Because I have CF I am not sure how hard it would be to tell your
child that hes doomed- I am going to speak rather plain here but
that's what this forum is for. To tell a child that they probably
won't live to see their children grow up and/or have a child. There
is no magic pill to make them feel better, nothing you can say to
take the edge off what is being said and you can't rightly say that
you'll get better because in all reality you won't. But you do need
to tell them, the sooner the better. I have personal experience
with this very touchy subject. My parents told me from day one that
this wouldn't be fun, it would be hard work and together we could
keep me healthy. Anyway I socialized with another CF parent and her
at the time 6 year old daughter. I know we shouldn't have been
around each other but this is why I am posting this. To make a long
story short, Andrea( the little CFer) and I were listening to
Celine Dion's song, Fly. As many of you might know Celine wrote
that for her niece who died from CF.  Andrea didn't know that
she one day would die from CF, and I had just let the cat out of
the bag. Susie, Andrea's mom wasn't exactly happy that her little
girl now knew that she would die from it. Susie keeps her very
ignorant as to what can happen to her little girl. I felt like
total dog poopoo because I just assumed everyone told their
children the truth. I feel very strongly about this topic, you
shouldn't hide anything from your kids and especially not something
SO important!! I feel that if you grow up and have always known
that CF is not exactly fun then it won't be any different through
out your life. I hope this makes sense, you don't realize that you
are different if your parents told you early on that you are. You
don't remember that ''oh crap'' part. Plus I think all of the older
CFer's can verify that you don't really realize about the doomed
part until you are older and want more things from life that you
might not get. Then you start REALLY working on your health.
Atleast in my circumstances I have seen this.<br>
<br>
Sorry to blab your ear off, I can only imagine what it feels like
to have to raise a child with CF. It is hard enough to try and
raise a child right let alone one with such a scary and dominant
disease. I hope you find the answers you are looking for on here.

 

[thelizardqueen]

My mum never sugar coated anything for me, and I'm thankful for that. For as long as I can remember I've always known the brutal truth of CF. I guess it all depends on how much your child can handle. I've alway been wiser for my years, so I could handle that stuff from a VERY early age. You know your child - you know what he can handle and can't. But what I would say is don't sugar coat it for him, be honest with him - it'll be better for him in the long run. If you sugar coat things, then maybe in the future he won't be so concerend to do his treatments, etc.

 

[EnergyGal]

Be honest about CF and tell him that we do not know what the future will bring so it is to your advantage to take the best care of yourself as you can so you will be alive and well when there might be a cure.

My mom and Dad never had to tell me how bad cf could be. I grew up sleeping in a mist tent and that is pretty darn scary for a child. I had to talk my doctor out of this and fortunately he agreed with me from my made up observation. Whatever I made up became true for the future and they no longer used the tents.

Be as open as you can from time to time. let him ask you the questions and if you cannot answer them say we will talk to your doctor about this as I have no exact answer for you.

 

[Jane]

Hi,
I'm not sure how old your son is, but there are ways to discuss cf and its impact without being fatalistic. We don't sugar coat the facts, but we also don't go right to the bottom line: Your life sucks, you're gonna get sicker then you're gonna die. End of story.

My boys are 10 and 14 w/cf. When my older was about 6, he asked if having CF was a bad thing. I explained it is not bad, but it is complicated and that it is very important to keep yourself as healthy as you can. That was good enough for a 6 yr old.

When he was 12, he did a report in school about CF. Since then we've had discussions about his health (my older son is more vocal and inquisitive). We have never discussed life expectancy with them, only the importance of staying as healthy as possible.

With that being said... my 14 yr old often fights about taking meds. He "forgets" to take his enzymes in school and very often won't even eat. Sometimes its a passive rebellion, sometimes active. We (parents) at different times have had the intellectual discussions, the screaming, the guilt trips, the sympathetic hugs, the crying, the counseling etc. We have come to the conclusion that if we back off, he'll come around. At least we hope so. From reading posts by older teens and 20s, it seems that they all had some periods of anger and rebellion. As a parent it is heartbreaking to watch them make mistakes when we know it hurting their health.

Tell your son its ok to be mad at CF, its ok to get pissed about taking meds, but he still has to. Sometimes he won't but hopefully more often, he will.

Its not easy for a mom.
I'm with you.

Jane

 

[anonymous]

He's 7. Thanks for the input. That's kind of what we're doing. I have a pillow I let him beat the ***** out of when he's mad and it really helps. I just don't want him to be worrying about the longevity piece so soon.

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tiregrl19</b></i>

Because I have CF I am not sure how hard it would be to tell your
child that hes doomed- I am going to speak rather plain here but
that's what this forum is for. To tell a child that they probably
won't live to see their children grow up and/or have a child. There
is no magic pill to make them feel better, nothing you can say to
take the edge off what is being said and you can't rightly say that
you'll get better because in all reality you won't. But you do need
to tell them, the sooner the better. I have personal experience
with this very touchy subject. My parents told me from day one that
this wouldn't be fun, it would be hard work and together we could
keep me healthy. </end quote></div>

I just want to add to this in that Cf is a hard battle, and my parents always let me know that I would have to work very very hard to be healthy - however, I am now a mom and a wife and a teacher and my life hasn't been that bad, so I have a hard time saying "tell your child he's doomed" as many of us on this forum will probably be around a lot longer that we were ever told at diagnosis. I think facing the road ahead in full battle gear is the way to go, rather than looking down a dead end street.

 

[wanderlost]

that was me, above, not logged in.

 

[EnergyGal]

Hi Wanderlost
love your quote
"I think facing the road ahead in full battle gear is the way to go, rather than looking down a dead end street. "

 

[LisaV]

Anon,
Sounds like you have a good healthy approach to it.
I think it's important to give the disease a name and almost teach him consturctive ways to get mad at it (it is so hard to know how to channel anger at a disease) maybe through the pillos thing, and rants, and primarily by fighting back by taking your meds/treatments so that it doesn't steal the things of a "normal" life that he wants.

I do think you need to talk about the "life expectency" part fairly early (not at 7 tho'). Kids have access to information in so many places now (library as before and the web). I think you need to talk to them about it before they get to the school report thing. I was a school librarian and those school reports used to scare the immortal crap out of me. I was really really thorough about throwing out any outofdate medical information in my library, but not every library is. At my last position when I got into the book collection, I checked and everything was so bloody out of date that it said folks were going to die of all kinds of things that they really don't anymore. Anyway, I dreaded the reports because kids always do them on their illness or some family member's illness and I was always terrified that they would be all alone in some library when they read that somone was "doomed" - which would be bad - and particularly bad if it wasn't even true.

IMHO You can head off this misinformation and the hopelessness it fosters by saying that in the "olden days" before the treatments and such that kids did die of it (and, that some misinformed people might still think that), but that nowadays here are folks with CF that are all rown up, married, and parents, and who knows how long his generation will live - except that it will be even longer.

My husband was told that because he had Marfan Syndrom it would be a miracle if he lived till 35 and that probably he would die as a teenager before he married and had kids. (ANd that was the life expectency of folks with Marfans when he was in junior high.) Luckily that pissed him off and he just lived the "I'll show you" life and went on to do all of that and more (somewhat in a rush, I will admit). But it could have really set him back emotionally and psycholoically which would have been a real shame since they made enough progress with Marfan so that now the life expectncy is just about normal (assuming you don't have his "mysterious" bronchiectasis as well)....

Anyway, I ramble. Tell the truth, but don't elimate hope.

Good luck to you. This has got to be one of the hardest things a parent of a CFer has to do.
Maybe it's like sex and you start in bits and pieces from the beginning and keep going until they are all grownup and none of you can ever rember "the day" that they "learned the truth".

-LisaV

 

[Allie]

Ry was told at 5 that his life expectancy was not what other's was going to be, and he never had a problem with it. I am all for parents being up front with their kids about what we know now. The treatments are great and keeping yourself as healthy as possible is important, but don't screw around doing things that don't matter, because you may not have the same chances.

 

[LouLou]

Along the lines of what Wanderlost was saying...My parents always were open about the statistics of CF but never applied them to me. I knew what CF was all about from I don't remember when - very young. It wasn't like one day they sat me down. Thank God they didn't do it this way - I think it really would have effected my drive. They took really good care of me and encouraged my independence (sent me off to summer camp, etc.) and encouraged me to be like the other kids. They treated my relationships with boys just like all my other friends did. There wasn't anything strange. What this all did for me was brought me up to be a driven, disciplined person that is enjoying life to the fulllest everyday and doing everything I can to keep the CF at bay. My parents always told me that I had to keep my lungs in as best shape as possible because when the cure came the doctors wouldn't be able to fix damage, only stop the CF in it's tracks. This has been my approach to CF ever since I can imagine. No one can really tell any of us how long we're going to live - there could be a cure soon or maybe years out- why be doom and gloom - doesn't our society have enough ways to fail.... Like Wander said give him his armor. That is the best you can do, he has to step up to the fight.
This site gets me emotional, ugh...

 

[LouLou]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Allie</b></i>

...don't screw around doing things that don't matter, because you may not have the same chances.</end quote></div>

What are things that don't matter to you? I am always interested to hear your perspective..

 

[littledebbie]

I'm really on the "don't sugar coat" train.  And at
the point he is getting angry and saying these things to you I
think he is maybe letting you know he's in the mood to talk about
it.  i think I knew and "felt" it for myself very
young.  No one sat me down but I sure knew by about 5 at least
maybe younger and when i mentioned it to my Mom she was just very
honest.  Confirming that, my worries were legitimate, and that
no one knows really what the future holds, and no there
probably won't be a cure.  <br>
<br>
I think that last part is very important.  I know it's
controversial but I don't think encouraging kids to hope or pray
for a cure is helpful.  I think it's destructive.  Be
positive that they will possibly have a full life and everything,
but a cure is just really like pinning hopes on the lotto.
 You really shouldn't waste your time praying you win the
lotto or thinking if you are good enough and play it religiously
enough you are going to win.  I look at it like hey if there's
a cure thats' icing on the cake but it is not what gets me out of
bed in the morning.  <br>
<br>
One more opinion and then I'll quit rambling.  remember that
how you handle these things sets the stage for how you will handle
his healthcare always.  Since my Mom was alwasy honest with me
and never talked to Dr.'s when i wasn't in the room or anything, I
always trusted her and felt like she was on my team in the ring
swinging with me.  We got on the floor together to do
treatments, cried in hospitals together and laugh at morbid death
jokes together.  You know your kiddo better than anyone I say
tell him as much as you think he's asking to know, if you are
unsure you can ask him, he'll probably tell you.  Maybe he
just wants to know if he will be able to play high school football,
that kind of thing is serious stuff when you are a kid.  Talk
to him, if it;s getting to heavy for him he'll probably let you
know and he'll change the subject on you.  At least that's my
experience with the male species <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[coltsfan715]

My parents never hid that I had CF and all the meds I did were to fight CF and me being sick. I knew most kids my age didn't take meds or go in the hospital, but my mom always told me "It could always be worse." This was very effective before I turned 10. I never really asked if CF was a bad thing, I just knew. I had several friends die because of it when I was little, so I knew that it could hurt you. Even so I never asked about it and we never talked about it. I just went about doing my meds and things as usual.
Once I hit middle school, I started having to do biology and science reports. Well I chose CF because I figured it would be easy to write and get info on. I became so depressed when I started reading everything. It just all hit me. Once I finished that first paper I came out of the depression and realized - according to books things looked bleak but my life was still MY life and was not going to be ruled by CF. The same thing happened several times through High School also with papers and things. I never learned my lesson and always thought this time will be different I can handle it this time around. I do know that I found out when I was ready. I went seeking the information, it was not just thrust on me. I don't know how I would have handled it had my parents not let me be a kid and live without the worry of what will happen. I am a worrier anyway the last thing I needed growing up was to have the CF death cloud hanging over my head. My parents never told me about any life expectancy that was put on me until I graduated HS, then my mom broke down and apologized. I had worked my butt off to get scholarships and she felt badly that her and my dad hadn't planned for my college .. then proceeded to tell me everything about how they were told I would only live to 12 and so on.

If you think it would help your son to talk about it and that he could understand and it not upset him further I say start sharing some of the heavier facts about CF with him. I personally would ask him why he is so angry about everything with his treatments and the CF. Does he just feel different because he has to worry about treatments and can't just go out and play? I know I hated feeling different and would get upset alot about the coughing, my clubbed nails, my barrel chest, having to take enzymes ... anything that could be associated with CF upset me because people I knew tended to make comments about them not realizing I had CF and that is why I had those issues. It always upset me until I learned that people are mean and inconsiderate and I need to just rest assured that their comments were more a reflection of them than me. Does he feel limited by CF and is that making him mad? because if that is it he will be even more limited by CF if he stops doing his meds and things.

I don't know I guess my point. If you first find out or can maybe pinpoint Why? he is acting out then maybe you can "customize" your handling of the situation and what information you share with him to suit what he is having an issue with. I don't have kids so my thoughts may be completely unrealistic, but I just wanted to offer things that I experienced as I went through this same rebelious stage and the things above are ways I handled it and reasons I felt that way.

Lindsey

Lindsey

 

[vinsmom]

I agree!!!! Thanks

 

[vinsmom]

I agree! I want him to be a fighter and optimistic....not doomed and gloomed. I noticed your sign off...and one angel. Did you lose a child? I have lost one too. His name was Sammy. I was diagnosed with lupus during my first pregnancy and delivered Sam when I was 5 months pregnant. He was only 1 lb and obviously was not strong enough to thrive. So, when I got pregnant again with Vincent...my 7 year old w/CF...I had a very monitored but full term pregnancy. When Vincent was two days old he developed "blockage" symptoms while we were still in the hospital. That's when they suspected that he had CF...which was confirmed 2 weeks later. So, I really feel for anyone mom who's lost a child. It was a tormenting experience for me even though I didn't get to spend much time w/him. That's why I pray everyday for Vincent to be strong and healthy because I don't know if I could go thru that again.

Thanks for your input.
Patty
Vin's mom

 

[anonymous]

You can tell him about the guy with CF who was married for 42 years, had a 42 year career and an 8 year retirement. He raised two kids and was a wonderful Grandpa to 2 lucky grandchildren.

This is a horrific disease, no doubt. There are people who live long full lives with it - and please remember these "old people" didn't have the benefits of all the meds and treatments we do now.

 

[BigBee]

Oops, that was my post.  And that guy is my Dad.  He
would be happy to know that his life gave other people hope.

 

[catboogie]

it sounds like your son is a little bit angry. reminds me of myself when i was younger. he has a right to be angry! ideally, that anger will eventually turn into motivation, but the road might be rocky. for me, i had to be angry, test my limits for being "normal" and go down a self-destructive path in order to realize that i wanted to live. that i wanted to live as normal a life as possible. now i am 27 and very healthy, with good lung function and good quality of life. but i wouldn't be where i am today -- i wouldn't be able to stay motivated -- unless i had hit that low.

i don't wish this on your son. every one of us has to forge our own path. i think a lot of parents of kids with CF feel bad and try to cushion their lives. this is important, for you son to feel supported, but it is also important to encourage him to reach his highest potential. this is a very hard thing, but it is the hand we were dealt. fairness has nothing to do with it.

sorry to delve into that so much. when i was younger -- probably 8 or 9 -- i would always forget to take my enzymes and vitamins and it was very stressful to my mom. she sent me to a counseler. he turned out to be very bad. but i believe that another counseler might have done a lot of good for me at that age. there are so many parent-child dynamics that go on, then there is this disease mixed in...it is good for kids to have someone "objective" to talk to i think.

hope this helps.

laura