What are the do's and don't cf health

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creation301

New member
I have been reading lately about so many things that are dangerous for cf'ers and it sometimes makes me crazy to try to keep my child safe. I was just reading about swimming the other day and it never occured to me that this also could be a dangerous place for our child. I know that bacteria is everywhere and yet if there are places to avoid I want to. Right now I don't even want our child to play in the dirt because I am afraid she is going to catch something. I am trying to balance being a total germ freak and letting our child be a child. If any of you have any helpful ideas of what is really important to avoid and what to just let go I would really appreciate it. We stay away from the normal kid play areas, and childcare situations, and try to wash as often as possible, but dirt, swimming pools, I am sure the list goes on and on. Thank you for your help. I know that your knowledge from your years of experience can greatly benefit our child and hopefully make her life more full and as long as it can be. Tiffany
 
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creation301

New member
I have been reading lately about so many things that are dangerous for cf'ers and it sometimes makes me crazy to try to keep my child safe. I was just reading about swimming the other day and it never occured to me that this also could be a dangerous place for our child. I know that bacteria is everywhere and yet if there are places to avoid I want to. Right now I don't even want our child to play in the dirt because I am afraid she is going to catch something. I am trying to balance being a total germ freak and letting our child be a child. If any of you have any helpful ideas of what is really important to avoid and what to just let go I would really appreciate it. We stay away from the normal kid play areas, and childcare situations, and try to wash as often as possible, but dirt, swimming pools, I am sure the list goes on and on. Thank you for your help. I know that your knowledge from your years of experience can greatly benefit our child and hopefully make her life more full and as long as it can be. Tiffany
 
C

creation301

New member
I have been reading lately about so many things that are dangerous for cf'ers and it sometimes makes me crazy to try to keep my child safe. I was just reading about swimming the other day and it never occured to me that this also could be a dangerous place for our child. I know that bacteria is everywhere and yet if there are places to avoid I want to. Right now I don't even want our child to play in the dirt because I am afraid she is going to catch something. I am trying to balance being a total germ freak and letting our child be a child. If any of you have any helpful ideas of what is really important to avoid and what to just let go I would really appreciate it. We stay away from the normal kid play areas, and childcare situations, and try to wash as often as possible, but dirt, swimming pools, I am sure the list goes on and on. Thank you for your help. I know that your knowledge from your years of experience can greatly benefit our child and hopefully make her life more full and as long as it can be. Tiffany
 
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Emily65Roses

New member
You're going to get a lot of different answers on this one. This is my take on it:

I swim. When I was a kid, I played in dirt. I went to public pools, hot tubs, water parks. I had sleepovers. I dug up worms and went fishing. I did a lot.

I'm 23 now, and I'm still in pretty good health. Your child is a lot more likely to get sick or pick something up in the hospital (or at your clinic) than she is playing in the dirt. The first bad bug I got was from working in a retirement home, not swimming. That wasn't until I was 16, despite the fact that I lived like a normal kid when I was younger.
 
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Emily65Roses

New member
You're going to get a lot of different answers on this one. This is my take on it:

I swim. When I was a kid, I played in dirt. I went to public pools, hot tubs, water parks. I had sleepovers. I dug up worms and went fishing. I did a lot.

I'm 23 now, and I'm still in pretty good health. Your child is a lot more likely to get sick or pick something up in the hospital (or at your clinic) than she is playing in the dirt. The first bad bug I got was from working in a retirement home, not swimming. That wasn't until I was 16, despite the fact that I lived like a normal kid when I was younger.
 
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Emily65Roses

New member
You're going to get a lot of different answers on this one. This is my take on it:

I swim. When I was a kid, I played in dirt. I went to public pools, hot tubs, water parks. I had sleepovers. I dug up worms and went fishing. I did a lot.

I'm 23 now, and I'm still in pretty good health. Your child is a lot more likely to get sick or pick something up in the hospital (or at your clinic) than she is playing in the dirt. The first bad bug I got was from working in a retirement home, not swimming. That wasn't until I was 16, despite the fact that I lived like a normal kid when I was younger.
 
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CaliSally

New member
I'm with Emily.
I did not have any limitations as a kid. I'm going to be 41 in a few weeks.
It's important that despite the dx, we have a life worth living, not just a long one.

best wishes,
 
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CaliSally

New member
I'm with Emily.
I did not have any limitations as a kid. I'm going to be 41 in a few weeks.
It's important that despite the dx, we have a life worth living, not just a long one.

best wishes,
 
C

CaliSally

New member
I'm with Emily.
I did not have any limitations as a kid. I'm going to be 41 in a few weeks.
It's important that despite the dx, we have a life worth living, not just a long one.

best wishes,
 
A

amber682

New member
It's kind of a quality vs. quantity of life thing. There are CF bugs like staph and pseudomonas everywhere. It's in the dirt, the water, you can't possibly avoid it all together except maybe by living in a bubble. I'm not going to stop my son from playing in the grass, gardening with his gramma, swimming in the lake or the pool, or even jumping in a pile of leaves in autumn like I did when I was a kid. I even bring him to the playground. I do think he should stay away from hot-tubs, this is the one thing our clinic told us. And most clinics agree swimming is an excellent form of exercise, and is great for a person w/ CF, especially at a salt water beach. The one place you need to be the most cautious is at the CF center or hospital. I think you're more likely to catch something from another CFer than from the grass or the pool.

I say let your kid play like any other kid, the key is hand washing, and (trying to)keep their hands out of their mouthes. Obviously if I see some mold growing at the pool, or some funky fungus in the dirt he's playing in, I tend to worry about that getting into his lungs, so I'd leave. I avoid smokey places, or places where I know someone is sick. But otherwise, I say "Let 'em live!"
 
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amber682

New member
It's kind of a quality vs. quantity of life thing. There are CF bugs like staph and pseudomonas everywhere. It's in the dirt, the water, you can't possibly avoid it all together except maybe by living in a bubble. I'm not going to stop my son from playing in the grass, gardening with his gramma, swimming in the lake or the pool, or even jumping in a pile of leaves in autumn like I did when I was a kid. I even bring him to the playground. I do think he should stay away from hot-tubs, this is the one thing our clinic told us. And most clinics agree swimming is an excellent form of exercise, and is great for a person w/ CF, especially at a salt water beach. The one place you need to be the most cautious is at the CF center or hospital. I think you're more likely to catch something from another CFer than from the grass or the pool.

I say let your kid play like any other kid, the key is hand washing, and (trying to)keep their hands out of their mouthes. Obviously if I see some mold growing at the pool, or some funky fungus in the dirt he's playing in, I tend to worry about that getting into his lungs, so I'd leave. I avoid smokey places, or places where I know someone is sick. But otherwise, I say "Let 'em live!"
 
A

amber682

New member
It's kind of a quality vs. quantity of life thing. There are CF bugs like staph and pseudomonas everywhere. It's in the dirt, the water, you can't possibly avoid it all together except maybe by living in a bubble. I'm not going to stop my son from playing in the grass, gardening with his gramma, swimming in the lake or the pool, or even jumping in a pile of leaves in autumn like I did when I was a kid. I even bring him to the playground. I do think he should stay away from hot-tubs, this is the one thing our clinic told us. And most clinics agree swimming is an excellent form of exercise, and is great for a person w/ CF, especially at a salt water beach. The one place you need to be the most cautious is at the CF center or hospital. I think you're more likely to catch something from another CFer than from the grass or the pool.

I say let your kid play like any other kid, the key is hand washing, and (trying to)keep their hands out of their mouthes. Obviously if I see some mold growing at the pool, or some funky fungus in the dirt he's playing in, I tend to worry about that getting into his lungs, so I'd leave. I avoid smokey places, or places where I know someone is sick. But otherwise, I say "Let 'em live!"
 
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Ricky123

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CaliSally</b></i>

I'm with Emily.

I did not have any limitations as a kid. I'm going to be 41 in a few weeks.

It's important that despite the dx, we have a life worth living, not just a long one.



best wishes,</end quote></div>
your so right i rather have 10 years left of my life that is living as opposed to 35 years of monotony filled with treatment medication etc its quality not quantity
 
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Ricky123

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CaliSally</b></i>

I'm with Emily.

I did not have any limitations as a kid. I'm going to be 41 in a few weeks.

It's important that despite the dx, we have a life worth living, not just a long one.



best wishes,</end quote></div>
your so right i rather have 10 years left of my life that is living as opposed to 35 years of monotony filled with treatment medication etc its quality not quantity
 
R

Ricky123

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CaliSally</b></i>

I'm with Emily.

I did not have any limitations as a kid. I'm going to be 41 in a few weeks.

It's important that despite the dx, we have a life worth living, not just a long one.



best wishes,</end quote></div>
your so right i rather have 10 years left of my life that is living as opposed to 35 years of monotony filled with treatment medication etc its quality not quantity
 
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Samsmom

New member
My daughter wasn't dx until age 12, up until then it was life as usual for anyone. Since the dx we haven't changed much about what she does. We do avoid smoke and smokers and noone is allowed to smoke in our home. As for pools, sleepovers, etc. we say let her live. Luckily she has mild symptoms and we have never had a serious illness. If she were a really sick cfer I might feel different. I guess cf kids are like any kids, some get sick easier than others and only you know your kid. Example, by youngest baby would get sick every time we went to the grocery until I discovered that by wiping off the bar on the shopping cart she didn't get sick. This never happened with my other 2 kids. I would be more concerned with what is at the clinic or hospital than in my backyard, after all nature has a way of taking care of itself and we were created to exist with nature.
 
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Samsmom

New member
My daughter wasn't dx until age 12, up until then it was life as usual for anyone. Since the dx we haven't changed much about what she does. We do avoid smoke and smokers and noone is allowed to smoke in our home. As for pools, sleepovers, etc. we say let her live. Luckily she has mild symptoms and we have never had a serious illness. If she were a really sick cfer I might feel different. I guess cf kids are like any kids, some get sick easier than others and only you know your kid. Example, by youngest baby would get sick every time we went to the grocery until I discovered that by wiping off the bar on the shopping cart she didn't get sick. This never happened with my other 2 kids. I would be more concerned with what is at the clinic or hospital than in my backyard, after all nature has a way of taking care of itself and we were created to exist with nature.
 
S

Samsmom

New member
My daughter wasn't dx until age 12, up until then it was life as usual for anyone. Since the dx we haven't changed much about what she does. We do avoid smoke and smokers and noone is allowed to smoke in our home. As for pools, sleepovers, etc. we say let her live. Luckily she has mild symptoms and we have never had a serious illness. If she were a really sick cfer I might feel different. I guess cf kids are like any kids, some get sick easier than others and only you know your kid. Example, by youngest baby would get sick every time we went to the grocery until I discovered that by wiping off the bar on the shopping cart she didn't get sick. This never happened with my other 2 kids. I would be more concerned with what is at the clinic or hospital than in my backyard, after all nature has a way of taking care of itself and we were created to exist with nature.
 
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janddburke

New member
We've been very lucky. from what I've read here Jess seems to have a very mild case. We tend to let her try things out until we find we can't.
one trip with the Girl Scouts camping for 1 night so we decided to let her skip 1 PT and adjust the other meds so she could go. she got a terrible cough almost immediately upon returning. I spoke with several other parents of asthmatic and allergic kids and they were very bothered as well. must have been a fungus or mold or something. Luckily 1 round of some serious AB took care of it. Bottom line NO CAMPING. we tried the same thing with Horseback riding, rafting, day camp, sleepovers, gardening etc. so far so good. (but I do put my foot down on hot tubs, no way).
 
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janddburke

New member
We've been very lucky. from what I've read here Jess seems to have a very mild case. We tend to let her try things out until we find we can't.
one trip with the Girl Scouts camping for 1 night so we decided to let her skip 1 PT and adjust the other meds so she could go. she got a terrible cough almost immediately upon returning. I spoke with several other parents of asthmatic and allergic kids and they were very bothered as well. must have been a fungus or mold or something. Luckily 1 round of some serious AB took care of it. Bottom line NO CAMPING. we tried the same thing with Horseback riding, rafting, day camp, sleepovers, gardening etc. so far so good. (but I do put my foot down on hot tubs, no way).
 
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