Am I overreacting?

R

rainsmom

Guest
and i have let my daughter do absolutely everything other kids do basically, but it doesnt hurt to teach them good habits.
 
R

rainsmom

Guest
and i have let my daughter do absolutely everything other kids do basically, but it doesnt hurt to teach them good habits.
 

CJPsMom

New member
The difference in perspective from parents of CFers vs. CFers is pretty interesting. As for living in a "bubble", he doesn't, I just try to minimize the things that we know are higher risks - drinking after others, hot tubs, those types of things - and let the other stuff go (like teething on anything he can get his hands on). He's done all the age appropriate things that other kids are doing.
 

CJPsMom

New member
The difference in perspective from parents of CFers vs. CFers is pretty interesting. As for living in a "bubble", he doesn't, I just try to minimize the things that we know are higher risks - drinking after others, hot tubs, those types of things - and let the other stuff go (like teething on anything he can get his hands on). He's done all the age appropriate things that other kids are doing.
 

Ratatosk

Administrator
Staff member
I had more of an issue with going to family events and having other people give DS drinks from their glass. With the daycare, I'd mention it to them, that you'd prefer that not take place. I suspect being in close quarters, they're probably sharing germs anyway, but understand your concern. DS and his 3 year old cousin are forever sharing a sippy cup and snacks. He dotes on her and she has to do everything he does, so it's a lost cause. I'm not too concerned in that case because they're more like siblings. And other than when she was a teeny tiny baby and they got stranded overnite at our house, I can't recall her ever being around DS when she's been sick, let alone having a cold.

My playground story involved DS finding gum and telling me about it hours later. Can understand the wanting to lysol their mouths! <img src="i/expressions/face-icon-small-smile.gif" border="0"> But what can you do? <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Ratatosk

Administrator
Staff member
I had more of an issue with going to family events and having other people give DS drinks from their glass. With the daycare, I'd mention it to them, that you'd prefer that not take place. I suspect being in close quarters, they're probably sharing germs anyway, but understand your concern. DS and his 3 year old cousin are forever sharing a sippy cup and snacks. He dotes on her and she has to do everything he does, so it's a lost cause. I'm not too concerned in that case because they're more like siblings. And other than when she was a teeny tiny baby and they got stranded overnite at our house, I can't recall her ever being around DS when she's been sick, let alone having a cold.

My playground story involved DS finding gum and telling me about it hours later. Can understand the wanting to lysol their mouths! <img src="i/expressions/face-icon-small-smile.gif" border="0"> But what can you do? <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

dbsholes

New member
"The difference in perspective from parents of CFers vs. CFers is pretty interesting."

I agree. Parents are more likely to react with fear and a strong desire to protect, where those of us with cf - the ones that have to deal with all the disadvantages - want to live our lives as normally and fully as possible. I've seen more than one cf parent crush their kid's spirit. So try and find that fine line between being their protector and being their guide through a full and satisfying life. I've had long conversations with my parents about what it was like to suddenly have a sick kid after having three healthy ones. They made conscious choices; they turned to science, not God. They did Not respond to everything with with fear. Who wants to go through life in fear anyway?

Best to you,
David Sholes
Bennington Vermont.

45 yo male DDF508; CFRD; 85% pfts.
 

dbsholes

New member
"The difference in perspective from parents of CFers vs. CFers is pretty interesting."

I agree. Parents are more likely to react with fear and a strong desire to protect, where those of us with cf - the ones that have to deal with all the disadvantages - want to live our lives as normally and fully as possible. I've seen more than one cf parent crush their kid's spirit. So try and find that fine line between being their protector and being their guide through a full and satisfying life. I've had long conversations with my parents about what it was like to suddenly have a sick kid after having three healthy ones. They made conscious choices; they turned to science, not God. They did Not respond to everything with with fear. Who wants to go through life in fear anyway?

Best to you,
David Sholes
Bennington Vermont.

45 yo male DDF508; CFRD; 85% pfts.
 

schmj4910

New member
I don't think you are over-reacting. I would not want my CF child to be sharing anyone's cup. In my opinion, it is just one of those common sense things, like washing your hands before eating, that can cut down on sicknesses. There is no reason to use the saying "kids will be kids"...healthy kids shouldn't share cups either, it's gross!

Most of the time, I run into people who are too lazy/unmotivated to correct the situation, and they resort to saying that I am too germ-a-phobic, strict, mean, over-protective, etc. I have had family criticize me and belittle me, when they are the ones who are wrong. I always have to watch for people trying to feed my son with their bare hands. Yuck! (I know they haven't washed their hands.)

A good gauge would be asking yourself...If my child were healthy (no CF) would I allow him to do this? I would not allow my child to use other people's cups or utensils, eat without washing hands, eat food that other people have touched with dirty hands, wipe butt and not wash hands, ride in car without car seat/seat belt, etc. Just because they are kids doesn't mean they have to be slobs!

A side story: Every time I go to the doctor, I always see a kid in their pajamas. And the pajamas are always filthy, faded, stained, ugly. Why would you not put a clean outfit on your kid before taking them to the doctor? I'm not talking about the latest designer fashions, just something clean and decent! Would they, as adults, go anywhere in public in stained pajamas? No. So why make your kids do that?

So I guess each family has their own standard of cleanliness. I don't feel like I am "keeping my kid in a bubble" just because I have some basic rules to follow. As long as you are still doing age-appropriate activities, like lessons, play groups, or family events, and not keeping your kid locked up at home all the time, you are doing fine.
 

schmj4910

New member
I don't think you are over-reacting. I would not want my CF child to be sharing anyone's cup. In my opinion, it is just one of those common sense things, like washing your hands before eating, that can cut down on sicknesses. There is no reason to use the saying "kids will be kids"...healthy kids shouldn't share cups either, it's gross!

Most of the time, I run into people who are too lazy/unmotivated to correct the situation, and they resort to saying that I am too germ-a-phobic, strict, mean, over-protective, etc. I have had family criticize me and belittle me, when they are the ones who are wrong. I always have to watch for people trying to feed my son with their bare hands. Yuck! (I know they haven't washed their hands.)

A good gauge would be asking yourself...If my child were healthy (no CF) would I allow him to do this? I would not allow my child to use other people's cups or utensils, eat without washing hands, eat food that other people have touched with dirty hands, wipe butt and not wash hands, ride in car without car seat/seat belt, etc. Just because they are kids doesn't mean they have to be slobs!

A side story: Every time I go to the doctor, I always see a kid in their pajamas. And the pajamas are always filthy, faded, stained, ugly. Why would you not put a clean outfit on your kid before taking them to the doctor? I'm not talking about the latest designer fashions, just something clean and decent! Would they, as adults, go anywhere in public in stained pajamas? No. So why make your kids do that?

So I guess each family has their own standard of cleanliness. I don't feel like I am "keeping my kid in a bubble" just because I have some basic rules to follow. As long as you are still doing age-appropriate activities, like lessons, play groups, or family events, and not keeping your kid locked up at home all the time, you are doing fine.
 

Ratatosk

Administrator
Staff member
At family events when DS was younger it drove me nuts because adults would try share their food or drinks with DS and I was forever stepping in with his sippy cup. And it always seems like the adults were the ones showing up to events sick.

My FIL drives me nuts because he has chronic sinus problems and still carries around a hanky and I've complained until I'm BLUE in the face and his response is --- it's clean, I took it out of the drawer this morning. Ugh! Fine, please don't use it to wipe DS' face!
 

Ratatosk

Administrator
Staff member
At family events when DS was younger it drove me nuts because adults would try share their food or drinks with DS and I was forever stepping in with his sippy cup. And it always seems like the adults were the ones showing up to events sick.

My FIL drives me nuts because he has chronic sinus problems and still carries around a hanky and I've complained until I'm BLUE in the face and his response is --- it's clean, I took it out of the drawer this morning. Ugh! Fine, please don't use it to wipe DS' face!
 

Twistofchaos

New member
My parents made me live a relatively normal life, play at friends houses, in the dirt at farms etc. and just not worry much about germs. I thank them for it because being exposed to a ton of things probably helped strengthen my immunesystem and help in preventing me develop allergies. Ofcourse I can't say if it would be any different if the other was the case but these days studies seem to show too "clean" is just as bad as too unhygienic. I think for CF that's not really different, explain below.
I think growing up as a kid among kids it's important the kid is not constantly aware of having to be wary of this and that, kids are going to share drinks and food, smoke around it etc. It's a part of life.
As far as actual germs that will end up in our lungs, it seems you have to be "ready" to develop a certain type of infection and then the odds are significant you'll get it one way or the other even when you're very careful. We CF people don't have to worry too much about "healthy" people bugs except for virusses. (Colds, flu and things like Pfeiffer.) The real dangerous strains of bugs we can catch are from other CF'ers that have perhaps had years of antibiotics and so are difficult to treat. But these bugs themselves can often be found anywhere. Fe. Pseudomonas that's just everywhere. But again if you're not "ready" you'll likely not develop it and so going paranoid isn't going to help one way or the other.
Well, CF is a part of life but there's a lot more to life, finding a balance is difficult but important to enjoy it as much as you can and constant worries and stress even when things aren't goingbad at a moment is not a good thing..
 

Twistofchaos

New member
My parents made me live a relatively normal life, play at friends houses, in the dirt at farms etc. and just not worry much about germs. I thank them for it because being exposed to a ton of things probably helped strengthen my immunesystem and help in preventing me develop allergies. Ofcourse I can't say if it would be any different if the other was the case but these days studies seem to show too "clean" is just as bad as too unhygienic. I think for CF that's not really different, explain below.
I think growing up as a kid among kids it's important the kid is not constantly aware of having to be wary of this and that, kids are going to share drinks and food, smoke around it etc. It's a part of life.
As far as actual germs that will end up in our lungs, it seems you have to be "ready" to develop a certain type of infection and then the odds are significant you'll get it one way or the other even when you're very careful. We CF people don't have to worry too much about "healthy" people bugs except for virusses. (Colds, flu and things like Pfeiffer.) The real dangerous strains of bugs we can catch are from other CF'ers that have perhaps had years of antibiotics and so are difficult to treat. But these bugs themselves can often be found anywhere. Fe. Pseudomonas that's just everywhere. But again if you're not "ready" you'll likely not develop it and so going paranoid isn't going to help one way or the other.
Well, CF is a part of life but there's a lot more to life, finding a balance is difficult but important to enjoy it as much as you can and constant worries and stress even when things aren't goingbad at a moment is not a good thing..
 

Havoc

New member
I agree with Twist, you dose yourself with Pseudomonas every time you shower. As a kid, I was into everything. Playing outdoors, water parks, swimming in pools, lakes, streams. I didn't culture Pseudomonas until I was 23. Luck? Maybe. I am, however, very grateful for the childhood I had.
 

Havoc

New member
I agree with Twist, you dose yourself with Pseudomonas every time you shower. As a kid, I was into everything. Playing outdoors, water parks, swimming in pools, lakes, streams. I didn't culture Pseudomonas until I was 23. Luck? Maybe. I am, however, very grateful for the childhood I had.
 

CJPsMom

New member
Wow - not culturing PAs until 23 - our little guy cultured them at 9 months.

I really wonder if one day they are going to find other genetic indicators for severity of presentation, something beyond just the CF mutations themselves.
 

CJPsMom

New member
Wow - not culturing PAs until 23 - our little guy cultured them at 9 months.

I really wonder if one day they are going to find other genetic indicators for severity of presentation, something beyond just the CF mutations themselves.
 

Havoc

New member
Epigenetics might have some answers. Other than that, I don't know. I have 2 of the nastier mutations. It goes to show that genotype doesn't predict phenotype.
 

Havoc

New member
Epigenetics might have some answers. Other than that, I don't know. I have 2 of the nastier mutations. It goes to show that genotype doesn't predict phenotype.
 
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