Hi,I am the mother of a 19 month old son who was diagnosed last month with CF. I have a lot of information, but there is one topic that many people disagree on. Where do you let your kids go? I am a stay at home mom, so my son has very little contact with other kids (except his 5 year old sister). We belong to a health club that has a child care center. Would you let your kid go there for an hour 4 times a week? Of course I would wash his hands and change his clothes after we were done, and we would not go during cold and flu season. What do you all think? I really need some help on this one.Thanks,KellyMom of Lucy (5) and Dominic (19 months w/CF)
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What do you let your kids do?
- Thread starter anonymous
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Hi Kelly, Jen here! My Dr says treat your Cf kids as normal as possible. I did quit working out at the gym this summer though because i knew the child care room would be packed with kids. I would take him if its not too crowded. He will need flu shots every yr as will the rest of your family. We usually get them in October. Haley and Kristen are in dance classes, swim lessons and Haley is in Brownies but i do CRINGE every time i hear one of the other kids cough or hear someone has a cold. You just cant help being protective, its our job! You will make the right decisions, just trust you judgement. Jen
Hello!All i have to say is let your son do anything... it has been my experience that my body learned how to deal with the extra random colds that i got much better after i was allowed to go out and "get messy"... before that i would be sicker longer... think of it as getting his boday ready for having to face kindergarten (i know that is a long ways away, but it still will help)... i have a 2.5 year old step son who goes to the play pits at the mall and stuff... i am the one with CF but he could bring anything home... we just stick him in a tub with anti-bacterial bubbles, and try to keep things clean as possible... my mother sheletered me as a child and now we all regret it.. she was crazy with it though... so yeah just let him be a little boy!
I let my daughter do mostly everything.(within reason-lol) She is four and a half and was diagnosed when she was 9 and a half months. About going to the gym, I would take him and stay with him for a while, talk to whoever is in charge and find out how often things are cleaned, the rules of eating/drinking while there and generally see if you think the person in there has it together. Find out also the policy on kids with colds, that is very important, if they let kids with colds in there don't leave your little one there. Also observe how often the person working washes there hands after touching the kids. and how the k9ids are encouraged to wash their own hands. I hope this helps.Andrea
Hi Kelly, I haven't been around all summer and am just catching up with posts. I have two girls with CF ages 16 and 13. We have always let them do everything any other kid is doing. (obviously not the stupid stuff) They've been in dance class, gymnastics, gone to pre-school and even day care for a short time (I've pretty much been a stay at home mom for the last 13 yrs) They've both been heavily involved in scouting to include everything involved with scouting from camping to resident camp. They've been on field trips to farms with cows sucking on their fingers to exploring creeks, hiking in the desert (trail walks to see hidden water falls). While living overseas we even allowed our oldest daughter to experience independence by going on a class trip to another country without either of us. We've visited countries that aren't as clean as ours. We have always thought that they needed to be like the other kids and not be treated with kid gloves or they'd get the attitude of "I can't do it". Kids get colds, yes we worry every time one comes around that it will turn into something more than just a cold. But you can't keep them out of school and believe me, that's the worse place for the spread of germs. Any place where kids congregate is a germ factory. My oldest daughter herself gets concerned when a classmate comes to school ill. Saying "oh great, they are going to make me sick" but what can she do, attend class and hope that she doesn't catch whatever they've got. But washing the hands, teaching your kids to cover their mouths when they cough and noses when they sneeze is a start. If only everyone did that we'd have less bugs to go around.I don't think that an hour at the gym day care is a problem if it's a clean place. You wouldn't leave your child there if it wasn't anyway. Someone else mentioned checking with them about their policy on accepting children that are sick, but remember a runny nose doesn't always mean sick. I think my kids had runny noses for what seems like years. It's the green icky stuff you have to worry about not the clear stuff. I am a firm believer that kids need contact with other kids, othewise they don't learn to socialize. I hope I've helped in some way. This is just what we have done. My girls have fun memories they still talk about, and their favorite ones are the get down and dirty ones, like camping and playing in the creek. Liza
Hi,Yes I said sick. You have to remember thqt coughing/runny nose/watery eyes can all mean allergies. My daughter coughs more when she is having reflux problems too. Ask about the policy though, many places take kids even when they have colds as long as there is no fever but our kids can get more seriously sick from the cold germs than other kids. Andrea
hey,20/f with CF here <img src="i/expressions/face-icon-small-smile.gif" border="0"> my opinion [as well as what the doctor reccommended my mother] is treat your sick child just as you would your healthy child. holding him back does more harm than good in the short and in the long run.when i was a kid, my mother didn't let me go to the kindergarten and i stayed at home with my grandmothers. mom was overprotective because she was worried i'l catch germs and colds and whatnot, but not only i was less immune to those stuff by the time i went to school, i also missed the social importance of it and was envious of my friends, who did get to go [as they were healthy]. eventually, your baby will grow up and go to school and you really cannot avoid him from getting whatever's in the air at school. but it's the same with healthy kids. when someone in the classroom has a cold, everybody has it eventually. of course us cf-ers have it harder, but thing is, it's life - we can't sit at home all our lives. i recall when i was in high school and all those times at winter when everybody are sick but come to school because of the finals - it was tough, and sometimes i got sick more than the usual, but it's just one of the experiences. during my teens [and now] i did [and do] all the regular stuff - the school trips, the parties, the dating, the afterschool activites like dance classes and band and youth groups. i'm careful though not to come to places where i know somebody's really sick, like i don't visit my friends when they have the flu, and they know why and understand.just let your child do whatever healthy kids do. it's the best thing. sheltering does not prepare him for the responcibility he'll have to take when he's older.
I agree!! And parents who worry about little germs when there kids are young are forgetting that your child NEEDS to build up their immune system and when they are little and probably he healthiest is the perfect time to build it up. I know nobody wants their child to get colds especially when they have CF, but that is part of life and it helps us build up our immune system. I would say make sure you get the flu shot though because thats one way to prevent a nasty sickness...hey way before we knew I had CF my parents got the flu shot every year anyway because they didn't want the flu either.
Hi, my 14 year old daughter has CF. It's always been my goal to treat her as a child and not as a "disease". She has always been allowed to do pretty much whatever the other kids her age have been doing.....sports, outings, sleepovers, daycare when she was younger. Yes, of course we've had our fair share of colds over the years, but very rarely has it turned to anything serious. The only time she's really gotten sick is when her immune system was already stressed. Your child needs to build up immunities to everyday germs when they are young.
AnonymousPosts: 1017Joined: Sep 2001 Wednesday September 17, 2003 11:42 PM (NEW!) i need some help... my sister's baby was just diagnosed with cf and has not even been born yet..........can anyone give me a truthful reason to terminate this pregnancy???????????? we have talked to many people but none of them are telling us any of the horror stories that may be involved with this disease.. can someone please help???????????
Well, first of alll, CF is a terminal disease. Some people with CF live for 2-3 years, others into their 40's, 50's even 70's! It is a huge responsibility. Daily care, treatments, chest PT, enzymes, regular doctor visits, it can be exhausting both physically and mentally. I often thought that if I had known my son was sick before he was born, I would have terminated, we had no health insurance and care of a CF'er is COSTLY..but i didnt know. Hes 10 now, we are broke, but I love the little guy more than anything else in the world and cant imagine my life without him....While I am not a religious person, I do believe everything happens for a reason, and I believe this disease happened to us for a reason, I have'nt figured out what that reason is yet.........I also believe there is a plan...Everything that happens was meant to be, part of the plan. You could also look at it like this...your sister found out about it NOW for a reason.....What ever she decides, it is the plan. Either the future plan has her child in it or it doesn't...she decides...and her decision is all part of the plan!<img src="i/expressions/face-icon-small-wink.gif" border="0">
Thank you for being so honest. I am the sister she is talking about. I have read over these pages and no one ever discusses knowing prior to actually having the baby. I know what it is like to love and adore your children, I am already blessed with 2 sons(who are being tested for cf now). I would not ever change a thing about them, It is the knowledge prior to having the baby that concerns me, do I have to bring an innocent child into this world to suffer? I know that no one knows the future, but I do know some of it and that is the part that I am struggling with. Thank you again!
Just because a child has CF does NOT mean he or she cant live a happy, normal life. I wouldnt trade my 3 daughters for the world, CF or not. CF is a very SMALL part of who they are. Yes, its an adjustment but it is so worth the time doing treatments etc when you see them laughing and playing just as "normal" kids do. Good luck with your decision, you will make the right one for your family. Its so hard to hear your child has a disease but this one will have a cure in time, they are so close.
I'm not a parent, but a 21-year old with CF, and I've had a rough go of it since I hit college. While it hasn't been easy, I will say that it has made me the person I am. I feel stronger and more grounded because I know that life is the best thing anyone can give a child. I've almost died twice, and there have been rough times, but they have made me a better person for it, and I know that I am stronger and so grateful for everything I get to do. I think everyone should have the ability to live life to the fullest, and that my disease is only a small part of me, and I wouldn't trade my life for anything ever. Like I said, I"m not a parent, so I can't really help there...but I don't feel like anything in my life is lacking and I'm thankful for everything every day. I also think that I am an inspiration to others...I always have people tell me that. I know that I've helped a lot of people see the best side of life. So, to me, that makes me happy and overrides the fact that even though there are times that SUCK there have been so many more great moments.
i personally think that if i had a pregnancy in which it's determined the fetus has CF, i'd have terminated, but that's just me. i'm 20 and i have CF.thing is, you can never know with CF. you can have a fairly normal life, just with the treatment routine [which is harsh and demanding, but it really becomes a routine], and you can have a very hard time and spend lots of time in hospitals and die young. my mother took that risk. her first child was born in 1972 and died at age of 3 days, of CF-related problems. diagnosed post-mortem. she then had my brother, in 1976, who's perfectly healthy [tfu-tfu-tfu, knock on wood, thank god!!!]. it was a risk and she took it. then she "gambled" again, and in 1982 she had me, and i have CF, and i am turning 21 soon and still doing pretty much okay. really, you can never know. what's good is that you know your baby has CF even before it's born. so if you choose to go on with the pregnancy and have the baby, it can have treatment from the start, so this is good. the first months are very important and most of us aren't diagnosed right from the start and we didn't have treatment. i wish you strength. we are here for you <img src="i/expressions/face-icon-small-smile.gif" border="0">
I am the mother of two girls with CF, 17 and 15 and I just want to say that I have never stopped them from doing anything out of the ordinary. My experience has been that the more normal they feel, the healthier they are, both physically and emotionally. They both get their share of colds and I do worry, but this is life and we deal with it as best we can. I hope this helps those of you who are just starting out with newly diagnosed children
To the sister whose unborn child has CF: I have often pondered the "what if " my parents had decided not to have me - I am a 40 yr old female with CF and my cousin also had Cf, but died at age eleven. I guess my thoughts are that as somebody else also pointed out, the diagnosis of CF does not guarantee or always spell a childhood death sentence and that while it is a serious and scary disease, the fact that there are varying degrees of illness must be kept in mind. My childhood and early adulthood has been relatively carefree - no hospitalizations until age 32. Whether by luck or modern medicine, I am still alive and cannot say that I regret one day of my life because I have CF. Meaning, the range of emotional and social experiences have not been diminished nor tarnished by CF. As for costs - I hold down a fulltiime job with medical insurance which covers all of my treatments - of course there are co-pays just like anybody else would have for medications, but so far I have not been bankrupted by it.
Regarding the last post that stated "One day, your child will look at you and ask you why they were born with CF. Are you going to have an answer for him or her?...."My son who was just four years old already has asked me that very same question. One day he looked at us directly in the eyes and said, "Why did God make me with CF?" Inside my heart ached, but I did what any parent would do for any child with a hard question - I picked him up, gave him a great big hug, and told him that I love him and know having CF is hard for him. But everyone has something special and different about them. Some people wear glasses, and some people need wheelchairs. For Sean, his "special thing" is CF. I told him that I love him so much and I would not want him anyother way. I love him exactly the way he is. Yes, I wish Sean did not have CF, but HE is one of the most amazing things that has ever happened to me. I feel so grateful and lucky that I get the honor of watching this incredible little boy grow up. The way I choose to look at CF is that raising children is hard and scary no matter what - there are no quarantees. You have to take the good with the bad. Yes, there is a lot of bad with CF, but there is so much more good in life, especially in his and mine. It is all how you choose to look at life. I choose to look at life as "full" rather than "empty" - I hope you can one day do the same.Katrina - mother of Sean (5 w/ cf), Carolyn 4 (w/o cf), and Allison (2 w/o cf)