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How and when to tell a child that he has cf
- Thread starter anonymous
- Start date
Emily65Roses
New member
I knew since before I can remember, and I thank my parents for that. I've heard of many people not finding out until they're older, and they were resentful of their parents for years and/or still are angry.
Go with the flow. When he asks a question, answer it truthfully. Don't give him more information than his question specifically asks, but answer him honestly. If kids ask a question, generally they're ready for the answer. People are often surprised at how well kids deal with this type of stuff.
Go with the flow. When he asks a question, answer it truthfully. Don't give him more information than his question specifically asks, but answer him honestly. If kids ask a question, generally they're ready for the answer. People are often surprised at how well kids deal with this type of stuff.
My daughter is turning four next week. She has always known she has cf. For example, tonight she asked why Daddy does not take ADEK and my reply was "because he doesn't have cf, you and Jack (her brother) do and you need the extra vitamins to keep you healthy." I thought from her diagnosis at five weeks old that it would be better always to "know" she had cf rather than learning it one day. She is really to young to understand about disease and how it will affect the rest of her life. I imagine that your son already knows a lot about it. He probably already knows he has cf. He most likely knows that is the only one he knows that does treatments. I am sure that he listens during doctor's visits and has heard you mention CF before. I wouldn't make a big deal about it. Just answer him truthfully the next time he asks a question.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
I agree, you should tell her now, not when she's older. For one thing, you don't want her to hear it from someone else (relative, neighbor kid, etc).
Sometime when she asks about her enzymes, treatments, etc. use those open doors to tell her tidbits about CF. Also, your attitide when you tell her (i.e. apologetic, sad, weepy, scared, anger, etc) may determine how she handles the news too.
Sometime when she asks about her enzymes, treatments, etc. use those open doors to tell her tidbits about CF. Also, your attitide when you tell her (i.e. apologetic, sad, weepy, scared, anger, etc) may determine how she handles the news too.
I think you might be surprised at how much your child already knows and understands. If you are not deliberately keeping quiet around him about CF and related stuff he probably knows and accepts as normal alot of information. You could try some open ended questions to see what he knows and be ready to answer any questions that might arise.
Kids can be cruel so you wouldnt want your child to hear something from another child that they didnt know. I am not saying to lay everything out on the table, but depending on the age I think its very important that they know a lot. If nothing else so they can maybe correct someone else when spoken to about CF. Knowledge is power. My husband once asked me if I am proud of having CF. It blew my mind because I am not shy about explaining things to people. I just never though I presented it in that manner. I guess is a strange kind of way I am. I mean first of all it is part of me & I dont feel ashamed about me in general. I also believe it has made me the strong person that I am & have always been. I also am "proud" to have CF becaue I can give others first hand experiences or truly understand many things that others cant grasp. Many people say they know what you are going through (CF, Cancer, Relationship breakup etc), but how can they if they havent actually been through it. With any illness misconceptions will happen & to allow that when it can be addressed I think isnt right. Sometimes from the mouths of babes is the biggest reality check!
lovingBenandCambree
New member
I don't remember my parents ever actually sitting me down and saying that you have CF. My older brother has it too. We just both knew. However my older brother apparently didn't know that it was a disease that you could die from. He found that out when he was 13 by reading a newspaper article. He was devastated and then not much later had to go on antidepressant pills. It was always odd to me that he didn't know because me being his younger sister always was aware of that fact. I guess it is all in how you deal with things and what you are willing to accept. I would definitely let your son know before he gets too much older. I also agree with the idea that your attitude when you tell him will make a big impact.
Emilee with 2 E's
Emilee with 2 E's
I am not sure how much Sydney understands but we talk about CF, her having it, how most people don't, the treatments she does for it etc. If you ask her if she has CF, she will say "yes". I am sure there will be a time when she asks us specific questions about it (why, what is it, etc) but for now we don't want to keep her in the dark on the basics. But, I will say that we are a very open and communicative family by nature and not everyone is like that.
Kelli (mom to Sydney 2 wcf)
Kelli (mom to Sydney 2 wcf)
Our son is 4 years old with Cf and he knows that he has it, but we don't make much of an issue about it. He knows his 2 year old sister doesn't get breathing treatments, just him and he enjoys the one on one time. He also tells me when he needs his breathing treatment first thing in the morning and if I miss a place on him while doing his pounding. He always says he needs his "BT" so he doesn't get sick, he knows he has cf, but it is just a part of his life. I hope he always has this good of an attitude. He also knows there is things that he can't eat that the other kids can because he gets bowel blockages. He does really good for 4 years old!
Angie
Step mom of Brittany - 13 no cf
Tyler- 11 no cf
Brady -4 with cf
Taylor - no cf, but has chromosome 9 deletion q 21.2 q 22.1
Angie
Step mom of Brittany - 13 no cf
Tyler- 11 no cf
Brady -4 with cf
Taylor - no cf, but has chromosome 9 deletion q 21.2 q 22.1
I second that! Mallory's 65 roses is the book I rely on. Whenever kids (cousins/friends,etc.) ask questions, we break out our book. It is an excellent book for kids. My 4 year old (without CF) grasped the concept when he was 3. Now he can explain to people what his baby brother (8mos) has, and what we do to keep him healthy. He even tells people with dirty hands not to touch his brother so we can keep him healthy! I've found that the more kids know, the better they deal!
PreciousJewel
New member
Who is th author and can you get it on line...I would like to explain it to my son and nephews....Im am from the UK so how can i go about getting it???
Paula
Paula
It would great if there were a cure in the works, but I would not live thinking there will be. I had one cf doctor who was always telling me how close they were to a cure - and it was always 10 years away. Instead of living my life praying for a cure, I hope for new antibotics and faster treatments <img src="i/expressions/face-icon-small-happy.gif" border="0">
33 w/cf
33 w/cf
CFHockeyMom
New member
I think 10 years is very optimistic. Our Dr. is telling us that a cure probably won't be in Sean's lifetime. I tend to agree. Not trying to be pessamistic but CF gene therapy is something we just don't know how to do yet. If we were able to perform gene therapy on animals right now, then I'd say human gene therapy is about 10 years away. Since that isn't the case I think we're looking at more like 25 years (minimum). Remember, we've been trying to cure cancer and AIDS for a long time and even though survival rates are higher today than ever there still are no real cures just better treatments.
Like the previous anon poster, I'm holding out for better treatments so Sean will be around when/if gene therapy is possible.
Like the previous anon poster, I'm holding out for better treatments so Sean will be around when/if gene therapy is possible.