I have two girls. Ages 10 & 12. They were both diagnoses with CF 3 years ago. Their sypmtoms are fairly mild at this point and oral antibiotics have been able to get us back to 100% PFT's. My question is, at what point should they know that this is a degenerative disease. I don't want to scare them. I try to monitor what they read about Cf such as life span expectancies. I know they take me seriously when I say they need to wash their hands and don't share their water bottles but sometimes they just get lazy or can't refuse a friend who asks for a drink.They do know that kids have died from CF but we always say they have a mild form and so far it is. Their mutations are mixed. One is very common and moderately agressive, the other is extremely mild. It could go either way for them and it could be different for both. Currently one girls has displayed lung problems, the other has only had polyps and those have been completely gone since starting the ibuprophen treatment.Any suggestions about what young girls with CF heading into puberty are ready to deal with?thanks,Mom
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What to tell my CF kids
- Thread starter anonymous
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Hi,I don't know how to answer your question but I will need to give the same info to my daughter some day. If you want to hear how some other parents have handled it you could try the CFparents list athttp://groups.yahoo.com/groups/cfparents more for parents/grandparents or the CF2chat http://groups.msn.com/cysticfibrosis2chat for CFers and parents and anyone who loves 'em. The people on both of these sites are very helpful and willing to talk about stuff and give opinions as well as share experiences. These are the 2 best CF related sites I have found.Andrea
I would not tell your daughters about it yet. I am not an expert, but I found out that CF could kill me when I was 18 and was scared out of my mind. I also had a mild case, but never realized that chances were I too would someday die from this. I think the fact that I was 18 helped, but it was emotionally hard. I had very little knowledge on CF because I had such a mild case. My docs always said "your doing great" and I never realized that CFers even went to the hospital till I was about 16. When I was about 16 I became very interested in reading and educating myself about the disease and thats when I found out. Although I have come to terms that my life may get harder as I grow older I still struggle with it sometimes. I think unless it seems that a 10 year old may face dieing soon they do not need to know about it yet. 10 is still so young and teen years are hard enough to deal with emotionally as it is. Just considering that your girls are so healthy I think I would hold off on the death thing for now. Just my opinion, but do what you feel will be best for YOUR girls!
I think it has alot to do with maturity. When I was 12, I was very mature for my age and I think it was because of the CF and the things I had to do to stay healthy. I have known I have CF for as long as I can remember. I did alot of research on my own as a child too...whatever I could get my hands on about CF i read. I wouldn't keep anything from them...but don't scare them with the info...explain to them about CF, but also explain to them that they are doing well. Don't know if you knew this, but puberty is delayed a little in CF people...so they might not hit it as quick as the other girls their age. Knowing I had CF when I was younger didn't really scare me too much...but it definitely made me take better care of myself! I know this has to be a hard thing to talk about with your girls...I hope I have helped a little! Good Luck and take care!Dea
i agree with Dea, it is largely a matter of maturity. but not only that, how inquisitive they are. there is no reason to sit them down and tell them that the disease they have is degenerative if their minds arent thinking in that direction yet. i was extremely curious and would pick up magazines lying around and read them, and i read that "almost no CF patients survive past 20" when i was about 12 years old. needless to say i was pretty upset! but my dad sat me down and explained that firstly, the magazine was trying 2 raise money so had to give a worse case scenario and exadurate it, and that secondly each case is different, and theres lots of new medicines all the time etc.but i have learned more and more as i get older, mostly through doing my own research, but also through talking 2 fellow CFers, doctors, etc. my advice is probably just to answer your childrens questions honestly, you may find that "will i get worse as i get older" isnt a question that they are thinking right now. if they do read something, be honest, explain what an average is, and that there are many people alive with CF that are older than the average! good luck, and dont worry to much, for some reason CFers seem to be more mature and able to cope with a lot more from a much earlier age. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I am a 35 year old, stay at home Mom with CF. I was dx at 7. After we adjusted to a CF life, I watched the movie, Alex the Life of a child as well as read the book. I dont remember how or with who I watched it, but it didnt scare me. It made me cry. I always new I had a disease that had no "cure", but never considered it a death sentence even when I heard other kids whisper "she is dying". I guess it was a maturaity issue. My parents (especially my Mom) didnt discuss the "death" issue. Even today 17 years after my Dad died, its a "touchy" subject. The only problem I do have with things today is telling my daughter. She just turned 5 & knows the basics of the CF. She knows my lungs are not healthy like hers & that when I get sick it takes a lot of hard work to keep me out of the hospital etc. I have never told her or even suggested about death & CF. She is well aware of death in general because of close family members that she knows are in Heaven & we say goodnight to during our prayers. Its a hard call. Every child is different. CF will make your kids mature faster no question. I personally was glad that I knew, but I never actually had my Mom sit down & say this is the way it is. I learned on my own & educated people on my own all through schooling. I am not sure if my parents actually sat me down how I would have taken it. You know your children, you are the only one that can really tell at what point they can handle different issues. My heart is with you. I wish there was any easy answer. <img src="i/expressions/face-icon-small-wink.gif" border="0">
I am the one that told you not to tell them about the death thing. I just wanted to say that they SHOULD know all about CF and delayed puberty, but I what I meant was I would not tell them that they will die from it yet. If they ask, never lie. I just feel sitting a child down and saying this disease is going to get worse and you will die from it might be too hard at that age. But I DO think you should tell them abnout the disease and answer all questions they have. Even saying their life expectancy is 33 may not even be correct because in 2 years they may have a new drug that expands it to 50years. Thats why i don't like the whole life expectancy idea cause it is an average not an experation date! Anyway I wanted to clear my message up...I am not saying to avoid talking about CF I would just avoid saying they may die at 33.
I am 55 with CF, you can read my story in adults. Use me as an example for your girls, that if one is aware of their health & careful you can have a full & exciting life. You can live one year over & over or you can live 50 different years. Depends on your outlook. Everyone dies some time. I have out lived many classmates that had cancer, car accidents, war..... You can walk out the door & be hit by a car & be gone. I plan on reaching 100. They can too!
I think we will let our daughter know from the start (She is currently 28 months) how serious CF is when she can handle it. I think waiting produces more "shock". If our daughter gets upset I will share a story with her. She was diagnosed about 4 months before 9-11-01. I was watching a TV program about the passenger list on the plane that crashed in Pennsylvania. There was a little boy on that plane that shared Madison's birthday and perished on 9-11. On 9-10-01 anyone in the world would have put odds that little boy would outlive Madison.The truth is... we dont know the future or how long anyone will live. We plan to be direct and pull no punches but remind Madison that medicine, love and perserverance are all on her side
Misleading only if you ignore the fact that for every person in their sixties or seventies, there's an child who didn't make it... that's why it's an 'average'I understand that for situations like this, you want to accentuate the positive. Children don't often understand what 'sugar coating' means, that doesn't mean adults don't know what it means.... so no, averages aren't misleading- granted with each new discovery, lifespans generally increase. Each person with CF is like a snowflake, no two will have identical symptoms/outcomes. Likewise when your children achieve increasing levels of self awareness (as they mature), they will ask you what they want to know. It's up you to tell them what they 'need' to know. As parents of these children, trust your instinct as to how much information they can handle. No one knows them better than you do.
Well, we obviously disagree here. The average lifespan cannot take into consideration all the advances that have been made in the last few years or the ones that will be made in the future. It is, therefore misleading. It is an average by definition. It can only use specific data and it cannot project the furture. it doesn't mean that these children will hit 30 and die. It doesn't garantee they will even get to 30. It doesn't gaurantee they will live longer either. It is not the best idea to give kids of this age (remember they are 10 and 12 not 16 or 18) a concrete number like this, unless they are mature enough to understand that this doesn't mean that they will die when they are thirty. Remember that 25 years ago they weren't able to do transplants for CF patients either. There are more people living longer and longer between the advancements in therapies and transplants. There are also some who choose not to go the transplant route and maybe if they had gotten transplants they would have lived another 10 or 15 years. We will never know. There are also people who have passed because they chose not to adhere to their therapies at all. People (especially kids) hear that number and think right away that this means that there is no way that they will see their 35th birthday. So I do feel that this "average lifespan" number can be misleading and should be taken with a grain of salt. You may think that it is "sugar coating" it to say that we can't really take that "average lifespan" and apply it to every person with CF. But I know a few Cfer's who are long past 30 who would disagree. And I know a few parents who have already lost a child to CF long before they hit the "average lifespan" who would disagree, too. Every person is different and there is nothing wrong with having hope that our kids will make it into their 70's as well. Just think the average lifespan for the CF people who are now in their 60's and 70's, when they were born was under a year.
I have to agree with Drea. I think averages are just numbers and should not be taken to seriously. If it were up to me, I would choose not to even know about the average age myself and I am an adult! It seems like we focus to much on numbers and averages. Whose to say that in 15 years there won't be a cure and our average life span won't be 70?? Anyway, I agree take the average with a grain of salt...
I think we must continue to bear in mind that there's a difference between current average life span, and projected lifespan. The former takes into account all those who've died today and looks back, while the latter starts with who's born today and projects forward.... That said, it goes without saying that you take these numbers with a grain of salt. It's kinda funny, my post felt like an extension of what Dea had to say, which was essentially "...don't lie to them, but don't keep anything from them either..." Did you see the part where I said "...as your child achieves more self awareness (and maturity) they will ask you what they want to know..." and that goes for everything, not just CF. It's the savvy parent who can determine the age appropriate information to be given to the child when asked. Your worst case (and best case) scenario is your child becoming a teen and developing compliance issues- and lots of teens have compliance issues- stops the program thinking that they'll live to be 60 or 70. Remember when you were a teen? 30 might as well have been 60 or 70! As for the rest of your post Andrea, full of red herrings... Whether or not cf'ers comply with their program, choose or not choose transplants etc etc is simply fodder for a different thread- although the fact that some cf'ers, transplant or not, can follow their regimens to the "t", still die young. I know it's hard to believe, but that was cospicuously left out of your post (do you really think that death is reserved for only those who "choose it? ie not complying, choosing not to have tranplants etc? Didn't think so). Please, be optimistic for you children with or without with CF, you owe it to them- but for their sake, when the time comes, keep it real.P.S. This is just my opinion, take IT with a grain of salt too- I simply represent another point of view.
To the last post...the person defending their other postI have to agree with a lot that you have to say and what Drea has to say...like as they mature they may ask questins and not to lie in answer to their questions. I have to disagree with one thing. When you said "remember when you were a teen? 30 might as well have been 60 or 70" Maybe I was strange, but as a teen I never felt like 30 was old. I thought at 15, my gosh if I only live to 30 my like is 1/2 way over!!! If the average was 60, I would have thought, Gosh I have a ton of time left. I don't think anyone (including teens) would think wow if I get to live to be 30 I will be soooo old. Non cfer I agree they probably think 30 is up there with 60, but as a CFer who is looking at their life I don't believe they would think of 30 as old age. Growing up I didn't even want to get married till 26, but then if I was to die at 30 I would only hae 4 years of married life. anyway thats my disagreement.
Obviously, I do not believe that death is reserved for those who choose it. The people who do not comply do throw off the "average lifespan" thing though, for those who do comply. I am well aware that CFers die even though they comply with every aspect of their treatment. As I said in my post (not conspicuously left out) I do know people who have lost children to CF long before they were near the "average" And they were compliant. Also, remember that we, as parents, are not the only source of info that our children have. There are enough well meaning (but not particularly savvy) people who try to explain to their own non-CF kids about CF and (stupidly, in my opinion) give out that magic "average" number of 30. Those kids pass that info on to our children as well as other kids and scare the sh*t out of them. So we cannot necesarily control this info until they have achieved "self-awareness (and maturity)" even when we have used our own common sense. Another good reason not to throw that "average" around too lightly. You know, maybe I'm funny too, but I didn't think that 30 was like being elderly. I thought that I would have a lot more living under my belt at 30, but it didn't mean the same to me as being 60 or 70. Maybe I had more exposure to adults and elderly people than the kids who think that they will "live forever" or maybe I was more consious of the easy loss of life at any age. (of course I still made a few stupid mistakes that probably could have killed me but they were more based on believing in the innate goodness of people, and getting myself into situations when I had to rely on it and it wasn't there.) I don't know how my child will handle compliance as she gets older. Maybe she will decide for herself that she doesn't want to do it-and I'll have no control then. Maybe having that "average" number thrown at her, will make her feel that she will die from CF anyway so why continue to put up with all the meds and therapy? Maybe it will make her want to fight and prove that number wrong. I have no way of knowing or predicting the future. I never said that I believe my child WILL make it into her 60's or 70's, I have never had that "program thinking" even before she was diagnosed. anything can happen. I just have hope that she will live longer than the average lifespan (and I'll do what I have to to help her get there while I still have control). I find hearing about those who are living into their 60's and 70's with CF inspirational. As, a Mom, it gives me hope that anyone can beat the odds.That said, I have to go do treatments now.Andrea
The average life span is just that. It is a bunch of data gathered and calculated to come up with statistics to give people an "idea" of the "average" case. Never (regarding CF or something else) should it be taken literally. When I was diagnosed at 7, the average lifespan was the teens. When I reached my teens it was extended to the twenties. When I hit my twenties it was the thirties (30 to be exact). I am now 35, married with a 5 year old daughter. I never counted down the days according to the "lifespan" data. I did look back & say, "WOW, look how much progress has been made." When I meet people with CF especially the parents of children just diagnosed (2 just recently) I am a proud example of what can happen. My girlfriend just read the book I gave her about CF because she wanted to learn more. It was a rude awakening for her. She also told me that if she had read that book before my getting pregnant that she wouldnt have supported me in my pregnancy. I told her to re-read that book because she missed a lot of important words such as "average". Unfortunately and fortunately (all rolled into one) there is no guarantee with CF. There have been times that I worked my tail off to get better & according to PFT's & Xrays it wasnt enough. There are other times I skate through a flare up. That is life in general. We just have CF in addition. I believe this is one reason CF patients are so strong willed & in general dont take life for granted. Notice I said in general. I, personally, need to be reminded of what a great life I have even with CF. Sometimes its a horrible exacerbation of my CF & sometimes its just a reminder from my little girl that she needs a hug. I have known many people in my 35 years. I live in a very rural area yet I have a life where I have lost young (newborns)to old (98 I would definitely put in the old age class) from being stillborn to car accidents to just their time. It always saddens me because I will miss that person on earth, but it never scares me. Sometimes "statistics" arent such good facts depending on how they are used. Thanks for letting me give my opion! <img src="i/expressions/face-icon-small-wink.gif" border="0">
MJSYou are an insperation to other CFers. If you would not mind I would like to talk to you sometime about having a child and just the stuff you do to stay healthy. I am a 19 year old healthy CFer. I was diagnosed at 14. If you want to e-mail me directly I will give you my e-mail address or if you would rather do it on the post just let me know and thats fine too.Thanks Emily
Wow, I've never "chatted" before. I didn't realized the amount of valuable feedback I would get from my query.Thanks to you all. As suggested, I do answer them truthfully when they ask, they just haven't asked much. I don't put much doom and gloom in their fundraiser mailer that goes out to the locals because I don't want their classmates to see it and start the well meaning questions or blanket statements regarding lifespan etc....We'll just carry on as we have, with lots of love and great hope for the future. I really do believe there is a cure around the corner and that lifespan question will become a mute point!Take care all,Debbie