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Explaining CF to your child
- Thread starter anonymous
- Start date
well as a child all i remember is when i went to people's hosues with my pills, they would ask why i have them and i would just say "I have Cystic Fibrosis and its hard to digest my food'...i dont think ireally uderstood what i was syaing 'digest'....but i grew up with CF so it was like i kinda knew what it was....i would just tell her basics for now, like "u have something called Cystic Fibrosis, which means you have to take your pills so that you dont get a belly ache'...as for the lungs part...make sure to always encourage her to be athletic!...i remember ALWAYS being into races, and would love having relay races, in factmy birthday party one year was sports...got me going!...so with the lungs i would just tell her somehting allong the lines like...you just cough more than some people, its ok...you just have to cough the googy stuff, called mucus, out (into a tissue or whatever) so you feell better!
also encourage her with not just races..and sports,...but also maybe get her a trampoline! best thing ever!...she jumps up and down and coughs up
as a kid, fanny packs were in, and so i always had my pills/enzymes in it, and puffer/provental with some tissues in it....with her maybe you can always have her carry around a little pretty knapsack, or purse...so shed like it as a girl and all<img src="i/expressions/face-icon-small-smile.gif" border="0">
sooo these are my suggestions...she doesnt NEED to know eveyrthing now, as she gets older and asks more, you tell more...dont ever tell her shes sick, or treat her like that!..i think im the person i am today because my parents kept things simple and treated me like everyone else!....theres a time when one needs to know things and a time when to keep things from them...give her the basics of what she needs to know for now and as she gets older, and the questions become more persistent and complex, you can/should tell her more about it
thats my suggestions...hope it works
19 yr old girl w CF/CFRD<img src="i/expressions/heart.gif" border="0">
also encourage her with not just races..and sports,...but also maybe get her a trampoline! best thing ever!...she jumps up and down and coughs up
as a kid, fanny packs were in, and so i always had my pills/enzymes in it, and puffer/provental with some tissues in it....with her maybe you can always have her carry around a little pretty knapsack, or purse...so shed like it as a girl and all<img src="i/expressions/face-icon-small-smile.gif" border="0">
sooo these are my suggestions...she doesnt NEED to know eveyrthing now, as she gets older and asks more, you tell more...dont ever tell her shes sick, or treat her like that!..i think im the person i am today because my parents kept things simple and treated me like everyone else!....theres a time when one needs to know things and a time when to keep things from them...give her the basics of what she needs to know for now and as she gets older, and the questions become more persistent and complex, you can/should tell her more about it
thats my suggestions...hope it works
19 yr old girl w CF/CFRD<img src="i/expressions/heart.gif" border="0">
My dad is a doctor so my parents always discussed my med needs in medical terms to me and I just grew up understanding it. Be open and honest. Include your child in talks with the doc. Explain what meds are for and why other people don't take them. Teach him/her how the parts of the body work. The more informed your child is, the more independent and confident they will feel.
Debbie
23 w/ CF
Debbie
23 w/ CF
Emily65Roses
New member
I second what Debbie said.
I approached answering my daughter's questions as I would have questions about the "birds and the bees"--just answer the specific question asked and nothing more. When she first asked, at the age of 2 1/2 why she had to take pills, I simply responded, "Because you have cystic fibrosis and your tummy doesn't work right." She accepted that at face value and parrotted it to anyone who asked her about her enzymes.
At first I had been afraid to tell her the "awful news" that she had cystic fibrosis. But I finally realized that, for her, those words did not hold all the meaning they did for me. They were just words, no worse in her young mind than being told she had a runny nose. She would take her cues from me, so as long as I was calm and matter-of-fact, she would take the same attitude.
As she grew and her thought processes became more sophisticated, so did her questions. But I kept my same attitude and simply answered the specific question she asked at the time. If my answer led to more questions, we dealt with those. I always believed that if she was mature enough to come up with the question, she was mature enough to deal with the honest, but always gently phrased, answer. I determined to never lie to her, no matter how difficult the question. As a result, she always knew she could come to me for answers. As she got older, this sometimes led to late-night discussions as we both struggled with difficult and painful issues. She learned that she always had permission to have her own feelings about the issues, so sometimes she expressed anger, sometimes we cried together, and often after a long discussion, we released our feelings by being completely silly and laughing together.
Sometimes it's tough to know how much to say and how much to hold back. Just be sensitive to what your child really wants and needs to know at this point in his/her life and go from there. A lot of it is getting to know your child really well and listening to your intuition.
At first I had been afraid to tell her the "awful news" that she had cystic fibrosis. But I finally realized that, for her, those words did not hold all the meaning they did for me. They were just words, no worse in her young mind than being told she had a runny nose. She would take her cues from me, so as long as I was calm and matter-of-fact, she would take the same attitude.
As she grew and her thought processes became more sophisticated, so did her questions. But I kept my same attitude and simply answered the specific question she asked at the time. If my answer led to more questions, we dealt with those. I always believed that if she was mature enough to come up with the question, she was mature enough to deal with the honest, but always gently phrased, answer. I determined to never lie to her, no matter how difficult the question. As a result, she always knew she could come to me for answers. As she got older, this sometimes led to late-night discussions as we both struggled with difficult and painful issues. She learned that she always had permission to have her own feelings about the issues, so sometimes she expressed anger, sometimes we cried together, and often after a long discussion, we released our feelings by being completely silly and laughing together.
Sometimes it's tough to know how much to say and how much to hold back. Just be sensitive to what your child really wants and needs to know at this point in his/her life and go from there. A lot of it is getting to know your child really well and listening to your intuition.
lovemygirl
New member
I also have a 4 yr old (daughter) and she has always known about her CF. She often asks questions and we answer in an age appropriate manner. She is a big reader like me so we found some great books which are perfect for this age. Ask your CF nurse if they have any or look for these titles.
Mallory's 65 Roses
CF and Me
This is Paul
Some are out of print but I was still able to find copies.
Your CF team is also a great place to have your child learn. We always let her participate and ask questions. She knows when we are calling the hospital (and why), she comes to the pharmacy for her meds, and asks questions at clinic. She is very involved in her own care and the door is always open. I am sure she does not grasp it all at this age but she knows everything she needs to at this age, because i don't want her doing her own research as she gets older and reading outdated stuff.
Mallory's 65 Roses
CF and Me
This is Paul
Some are out of print but I was still able to find copies.
Your CF team is also a great place to have your child learn. We always let her participate and ask questions. She knows when we are calling the hospital (and why), she comes to the pharmacy for her meds, and asks questions at clinic. She is very involved in her own care and the door is always open. I am sure she does not grasp it all at this age but she knows everything she needs to at this age, because i don't want her doing her own research as she gets older and reading outdated stuff.
writewoman
New member
I think the trampoline, if properly supervised, is a great idea. Most pediatricians will advise against it because they treat so many tramp-related injuries. However, we got one for our daughter when she was only two and it was a fun way for her to strengthen her lungs and to get her coughing. We always supervised her carefully so there were no injuries. She is now 25 and used the trampoline up until a few years ago when she got married and moved out of the house permanently. It was a great investment!
i think the trampoline IS the best thing ever! my parents bought me one when i was little...and LOVED to jump on it....nowadays they have those HUGE trampolines, with nets around it, to be more safe...and my neighbor has one, so even though im 19 years old, i go on the BIG Trampoline whenever i get a chance (i exercise all the time at the gym-no worries) and the trampoline STILL very much helps me cough! and its fun!!...i agree...buy a trampoline!
writewoman
New member
I wrote a little booklet for children with CF that was published by Schneider Children's Hospital (part of Long Island Jewish Hospital) when my daughter was younger. People have responded very positively to it over the years. I have kept quite a few copies that I give out occasionally. If you're interested, I'll post my email address and we can correspond privately so I can get your address and mail it to you. My daughter was seven when I wrote it and she acted as editor, by telling me what she thought I should include and whether or not the language was appropriate. It was a fun experience.
I read your letter about the trampoline and had to reply. When my daughter was 3 my parents bought her an indoor trampoline. She has always been a child who could not sit still, but with the trampoline she bounces non-stop. She loves her Disney movies and will bounce for the whole hour plus with excitment! Great exercise!!!
writewoman
New member
I'm sorry I've been out of touch, but I will e you, then send you a copy of the booklet. I think it will be especially appropriate since he's now the age that she was when it was published. The hospital decided to use pictures of Holly instead of the illustrations I had envisioned so he can see someone his age throughout the story. I hope it is helpful.
writewoman
New member
The swim team is a great idea. We offered both our daughters the opportunity to do all kinds of activities from early on. Holly, my daughter with CF, enjoyed gymnastics as a little kiddo. However, by the time she was school age, we got her involved in swimming on the local team, an activity she kept up until she was in high school.
She also demonstrated a great interest in music, which is now her career, so we encouraged her to sing in the choirs at school, which was great for her lungs. This all to say that no matter what your child's interest, there is most likely a way to help keep their lungs healthy in a way that will also encourage an activity they enjoy. And...they more they enjoy it, the more likely they are to keep it up over the long haul! As I said, my daughter's career is now in music--not in singing but in violin. She plays and teaches...and loves it!
She also demonstrated a great interest in music, which is now her career, so we encouraged her to sing in the choirs at school, which was great for her lungs. This all to say that no matter what your child's interest, there is most likely a way to help keep their lungs healthy in a way that will also encourage an activity they enjoy. And...they more they enjoy it, the more likely they are to keep it up over the long haul! As I said, my daughter's career is now in music--not in singing but in violin. She plays and teaches...and loves it!
Everyone has such good suggestions - I always learn so much on this board. I just want to add that I think it's also important to admit that we as parents do not always have all the answers either. My four year old has come out and asked, "Why do I have cf and my brother doesn't?" He's also said, "Mama, I really don't want to have cf!" I've had to say, "I don't know why you have cf and your brother doesn't...and I wish you didn't have it either, but we'll work hard to keep you healthy and strong. If we take good care of our bodies then we will feel better and happier." This seemed to help my son...on a four year old level at least. I haven't really thought about how to answer the really hard questions in the future. But, I'll always try to be direct and honest.
Carey
Carey