questions about how you were raised

[wanderlost]

I am a mom, but not a mom of a CFer - however, being a CFer myself, I think I have a nice long sturdy leg to stand on.

I read so much about mom's of CFers who try to shield their children from everything. I know there was a waterpark debate going for a while, and I have read about parent's not having play datse, don't send kids to birthday parties, etc. I am not going to judge this behavior one way or another, I just want to know, how were you raised? Normally (interpret that as you wish, I guess) ? Relatively normally? In a glass bubble?

I did what I wanted as a kid (I mean, within reason), but I went to (public) school, daycare, waterparks, I was on a swim team, I had friends over all the time. sure, I was taught hygiene, but like any other kid, I scrimped on hand washing plenty... no one was asked to wash up before coming into our house, and despite all this, I turned out OK.

So does keeping your child protected from the outside world really keep them healthier in the end? It seems like genetics plays a huge role in this, and there isn't much you can do about that. Is this decision just based on the child's health (obviously, the sicker the child the more restrictions, I understand this)? I just don't understand. Having Cf is hard enough. I struggled quite a bit with being able to be a "normal" kid, and thank god my parent's didn't keep me from that.

and you???

 

[NoExcuses]

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[Seana30]

I just posted about this in the family section.

I am a firm believer that your mental health has SO much to do with your physical health!

We keep a clean house, and you will find Lysol in every room in our house. We make the kids wash their hands before eating and after using the restroom, and use "normal" hygiene habits throughout the day....but that is as far as we go.

Courtney has friends over, she goes to friends houses, and her brother and sister have friends over. I could not imagine keeping Courtney "in a bubble".

I do find myself at times wanting to tell her that she should not do or go certain places, but my main goal for her is to live a happy, fulfilling life!

Seana

 

[wallflower]

I did everything any other normal kid did. I was not shielded from anything (although the fact that my parents where told my life expectany was 10 might have had something to do with that).

I played in the dirt with the other kids, had swimming lessons at the city pool. Our house was clean, but we didn't sanitize.

I was never afraid of being infected or catching anything (until I started coming to this board last year and seeing what all was really out there). I had roommates in college, studied abroad, was also in a sorority (Amy, I am an AOII - what are you?).

I remember being in a summer camp program as a kid - Camp Hope? can't remember, but it was for disabled kids. It was fun, but I felt weird going because compared to the kids there, I was normal (non-visual disability).

I say let kids be kids. They have the whole rest of their lives to be paranoid.

 

[Emeraldmirror]

My mom treated me very normally... i didn't even realize i was different. We lived by a river and i was down there everyday catching bugs and snails and stuff and i was out climbing trees with all the other kids.. i could keep up just fine. I went to daycare, cf camp, first class in ontario to do jk, went to peoples houses, sleep overs, birthday parties the works. In fact until i was about 12 it didn't occure to me that coughing up green stuff was "abnormal". Don't get me wrong i knew i had cf and i knew i was sick, i think by grade one i was the only kid that knew the meaning of contagious, so i could tell people "it's not contagious". I was very hyper active and loved playing outside, usually my mom had to drag me inside at the end of the day. I was your average kid, with the exception that every morninga nd night i did my mask and physio, and took pills before i ate, which i never would have learned to swallow had it not been for cf camp. I think treating your child as normally as possible and letting them play and have fun will help them grow up to be healthier adults. Remember as a child most of the bugs and colds you get like the chicken pox builds up your immune system that much more. And all the running around helped keep my pfts as far up as possible.


Ashley 21 /cf

 

[NoExcuses]

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[anonymous]

The pulmonologist doesn't think DS should be in daycare. Either apparently I should stay at home or we should get a nanny. I have friends who stay at home and who have nannies -- I swear those kids are sick a LOT more often than DS. DH and I figure that eventually DS is going to have to go to school and interact with other children -- plus I don't think I could stay home with him. He's just too darned busy. He goes to a daycare center -- he gets fed well, they have preschool, they have outdoor activities -- even in the winter, he interacts with other kids -- if he was home with me -- swear to god, I'd have to prop him up in front of the tv 'cuz he wears me out.

Because my inlaws have a lake home, we feel it's important that DS take swimming lessons and learn to swim. We didn't even mention that at our clinic appointment -- just signed ds up for lessons.

Last clinic appointment the pulmonologist told us that the only sports DS could be in would be gymnastics or track --that's it 'cuz of the potential for molds, dirt, germs... DH and I figure we'll let DS decide what he wants to be involved in... But feel he will be involved in some sporting activity.

One thing I won't allow DS to do is to be in a hot tub. Nasty germy cesspools. I won't let him play with the toys in the waiting room at the CF clinic, nor will I let him play/interact with the other patients there. He doesn't attend any CF events, other than great strides and he's the only child there and he stays in his stroller. He's only 2 1/2.

There's been a lot of discussion about cross contamination. Maybe some feel I'm too protective when it comes with DS and other CFers.

Liza

 

[Diane]

There isnt one thing i didnt do as a kid. Since i wasnt really sick as a child except for the normal stuff.... colds, mumps, chicken pox, this and that , i lived like any other kid. One of my favorite memories was of going to girl scout camp. I just LOVED that. When i think of the stuff i did that my mother didnt know about i wonder how i lucked out and am still here. My friends and i used to pick chewing gum out of the streets that was all black after being run over a million times and chew it.... EWWWWWWW. We also picked up a lit cigarete that someone threw on the ground and took a puff...WHAT were we thinking???? Dug thru sand and finding burried treasures from stray cats and picking it up not knowing what it was.
Oh and eating Halloween candy on the way home even after being told not to.... you name it, i probably did it................. yikes

 

[thelizardqueen]

Like Amy said, I'm double Delta F508, and at 24 I'm pretty much as healthy as I've always been growing up. Nothing much has changed in my health - no IVs, no hospital stays, minimal meds, etc. My mum treated me like a normal kid. I went to water parks, swam in public pools, lakes, sat in hot tubs and jacuzzi's. I went to birthday parties, I attended CF events and camps. I was even around smokers a lot too. My mum was a smoker for the longest time, but tried to keep her smoking outdoors - even when she did this I was right by her. Even boyfriends I lived with had family that would smoke around me all the time. I washed my hands sometimes, but for the most part I was a normal kid. The only thing my mum did was not let people into the house who she knew were actively sick with pneumonia, bronchitis, or a very bad chest cold. Other then that, sky's the limit. I know that genetics plays a very big part in your health, but its also how you treat yourself as well. CF was never hidden from me, I was never made to feel bad about it, so I accepted it like 2nd nature, it became a part of me. I know that a mental state of mind plays a part. If you're depressed, etc you get sicker quicker. That being said - now that I'm older, I'm definitly more health concious then ever before, and that's because I want to stay just as great as I am now for a long time before I have to worry about IVs, etc. In my opinion kids should be kids. I sometimes wonder how I will raise my kids when I have them, and the only thing I can think of is that I will make sure they wash their hands whenever they come around me. I say let them play, take them to water parks etc. You're only a kid once, you have your whole lives to worry about being careful.

 

[anonymous]

My 8 year old daughter has CF. She wasn't diagnosed until she was 21 months old, but as an experienced mom ( I have 3 grown kids!) I knew something was wrong when she was less than a month old. She was hungry, all the time, poor thing. I've been over protective of her since, but not in a physical way, more psycological. She knows all about her disease and is naturally cautious of other's germs, but she is allowed to to whatever, playwise, she likes. Swimming, playing in the dirt, jumping on the trampoline, public school (she hates!!!), hot tubs, etc.... Her problems have seemed mostly digestive and she has lots of gas and is very embarrassed by it at school. I don't know how to handle that one!! Other children can be so cruel, so what are the psycological ramifications of the disease? I am considering home schooling her, but don't know if it would be good or bad for her in the long run. I guess I'm thinking that I'm emotionally overprotective? I wonder if other's with cf can understand this.

 

[Emily65Roses]

I was "normal." I was instructed to do meds, and therapies, get flu shots, and keep up with all that stuff. But that's about as far as it went. I've always gone anywhere I wanted to. Around other CFers, to camps, daycare, public schools, pools, hot tubs, water parks, lakes, rivers, oceans, whatever. You name it, I went there.

Just as an example, my mom knew I was smoking pot on occasion in high school and she didn't tell me not to. Smartest d*mn thing she ever did, in my opinion. If she had told me I wasn't allowed, you know how it goes, I would've made a habit of it. She told me it wasn't the smartest thing, and she didn't like it (she made a point there to tell me it wasn't because it was pot, but because I was <i>smoking</i> that she didn't like it), but she wasn't going to stop me. And before too long went by, I stopped on my own.

I've never been stopped or restricted on doing anything, as far as I can remember, based solely on the CF.

 

[thelizardqueen]

Well, if you think about it - we are sort of in a sorority of types. Its exclusive, only certain people can join.<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[thelizardqueen]

I think for the children who are raised in a sort of bubble environment will only hurt them in the long run. I hate to say it, but kids need to be exposed to germs in order for their immune system to get used to them. Like chicken pox for example, as a kid its a fine illness to have, but if you've never had it as a kid and get it as an adult, it can get pretty bad. Kids have to build up a tolerance of certain germs and bacterias. That's why its perfectly normal for them to get colds, etc. So that your body learns at an early stage how to fight them off.

 

[rcq925]

Well I'm a mom of a CF'er, Hayley, who is 2 years old. While I know some are extreme, I don't consider myself to be one of those, however, we do take precautions. We use a lot of purell and are teaching her the importance of handwashing now! We tend to keep her indoors during flu/cold season (winter) as to not expose her to a lot of unecessary bugs. Granted this is easy now because she is just a baby, but as she gets older and attends school, ect. she will be out and about during flu/cold season. She has already been hospitalized 3 times and had a Nissen Fundoplication surgery. We wipe down the carts at the grocery store, avoid sick people/friends/and relatives, avoid other CF'ers, except for Great Strides which Hayley does attend, but at our walk people are very respectful of each other and tend to maintain distance and stick to their groups of walkers. But other than thos precautions Hayley is a normal toddler, she plays outside, plays with her brother, friends, goes swimming, to the zoo, the store, ect.

I defeintely think some parents shelter their children too much, but I think it also has to do with how severe their CF is in early childhood as well. A lot of people who responded to this thread were relatively healthy children, no hospitalizations, IV's ect. until much later in life. I think parents of a child with little or no problems would feel more comfortable not being as strict. However, my 2 year old has been hospitalized several times already, already had major surgery and IV antibotics, so I do watch her a little more closely and take some precautions! But I definitely do not want her to live in a bubble, I want her to enjoy her life to the fullest, but I also want her to be alive for as long as possible!! Hope that makes sense.

 

[skh]

Since we didn't know Abby had cf until she was 11 yrs old we did not shelter her from anything. She went to swimming lessons, hotel pools, hot tubs, camping, had sleep overs and has stayed at friend's housese and that hasn't seemed to affect her in a negative way. I don't know what mutations she has - is this something I should have checked? Anyway, I sometimes feel that I should be better about all of this but then I think, she did just fine when we weren't aware that she had cf so why should I try and change her life around now? Obviously we do practice good hygiene but nothing extreme. She is a typical teenager and has a very messy bedroom. My house is clean but very "lived" in. We have a larger dog so there is everything that goes with that. I do know that I am more protective of her now that I know she has cf as far as being around other people who are sick. But then again, up until 4 yrs. ago I didn't worry about that overly much either - just what you would for a "normal" child.

I am glad this thread was started since this is something that has confused me. I never know what is "right". Now, after reading the previous posts, I feel that we are probably doing what is right for Abby at this time. It seems like this just depends on the individual. Right?

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rcq925</b></i>
I think parents of a child with little or no problems would feel more comfortable not being as strict.</end quote></div>

I think that's actually a very good point. And I'm not looking to argue here, just had to make one of my own as far as how I was raised.

I didn't go on IVs until I was 16. But as far as my mother was concerned, as a child, I was sick. I had surgery when I was 2 days old, again when I was 5. And for the first several years of my life, my parents were told that I had a good chance of not living past 18.

So I do agree, with a lot of cases, that may make a big difference. I see why that would make some parents be more careful. But even in those cases, you still get laid back parents. That is all, I'm done now.

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>skh</b></i>
I don't know what mutations she has - is this something I should have checked?</end quote></div>

Not necessarily. When I was 5, we had me tested (because that's when they found what gene caused CF), and found a got a DeltaF508 from my mom. The one from my dad was so bizarre, that back then, it had no name. I didn't find out my other one (1898+1G>A) until this past year. And the only reason I had my doc test for it is because I'm getting my mutations tattooed on me. Ahahahhaa.


<div class="FTQUOTE"><begin quote>It seems like this just depends on the individual. Right?</end quote></div>

Yes, absolutely. There are things I personally would suggest for any/all parents. But a lot of it depends on the person, the parents, the case. Sally isn't going to thrive as well the way Bobby is raised. Sally has to be raised in the way that's right for her.
And in the end, it's each family's decision anyway. So even if we said "Hey you should be doing X, Y, and Z," it won't matter if you choose to keep doing A and B.

 

[anonymous]

When DS was diagnosed he spent 4 weeks in the NICU and another 2 weeks in the local hospital 'cuz he kept getting infections. The drilled proper handwashing into us at the NICU -- teeny tiny infants have undeveloped immune systems. All newborns do. So anyone who wanted to hold Ds had to wash their hands.

I didn't used to wash my hands when I came back from the grocery store or wipe down the cart handles with those antibacterial wipes they have at the front of the stores. Now I do.

I also didn't keep antibacterial foam on my desk, but I do now. I work with a bunch of people who take great pride in having colds and "spreading their germs". A number of people are always coughing and sneezing into their hands and then digging inthe community food in the break room. Had an intern last year who came to work with strep throat (prior to getting antibiotics --she was going to try to cure it on her own), influenza....

I'm not a germaphobe by any means but try to use common sense. Those play rooms at fast food joints really creep me out. But once in awhile I let DS go AFTER he eats, if it's not too crowded and doesn't smell like urine and I wipe off his hands with antibacterial wipes and foam afterward, before he can dig for gold up his nose (toddlers are disgusting critters).

Liza

 

[skh]

Thanks Emily. I always appreciate the responses - they really help me know if I'm on the right track or so far off that I am beyond help lol.

 

[Allie]

Ry was raised like a normal kid, as much as possible. He went swimming, rode bikes, went to birthday parties, slept over at other people's houses. Ry attended public school. His parents bought a hot tub because of his arthritis when he was a little older. They were told Ry wasn't going to turn 5, 10, adulthood, so they just figured they'd let him be normal while he was here. It seemed to work for him.

I will freely admit I have a problem with the parents who don't let their kids swim, or go over to other people's houses, or go to school. I think Cf is alienating enough for a kid, without it making them not be able to do anything.

While we're on raising your kid rants, I hate it when people raise their kids to say "Boys can't cry, wear pink, play with dolls, etc" We had a boy come and play over here, and their parents got all peeved that Ahava and he painted thier nails. No open mindednes there. Same for "Girls can't play with trucks, wear blue, garbage garbage"

Sorry, tangent.