Bacteria

lexisangels05 · Jan 28, 2009

Hey I was just wondering if over the years you guys have leared what prevantative measures to take to prevent some of these terrible bacteria from getting in your lungs. I have done some research on psudomonas and b.cepacia, but nothing online tells how you can try to prevent these bugs. I know you can not prevent them completely, but I would like to know that I did all that I could. What should Lexi stay away from?
Thanks,
Melissa

lexisangels05 · Jan 28, 2009

Hey I was just wondering if over the years you guys have leared what prevantative measures to take to prevent some of these terrible bacteria from getting in your lungs. I have done some research on psudomonas and b.cepacia, but nothing online tells how you can try to prevent these bugs. I know you can not prevent them completely, but I would like to know that I did all that I could. What should Lexi stay away from?
Thanks,
Melissa

lexisangels05 · Jan 28, 2009

Hey I was just wondering if over the years you guys have leared what prevantative measures to take to prevent some of these terrible bacteria from getting in your lungs. I have done some research on psudomonas and b.cepacia, but nothing online tells how you can try to prevent these bugs. I know you can not prevent them completely, but I would like to know that I did all that I could. What should Lexi stay away from?
Thanks,
Melissa

lexisangels05 · Jan 28, 2009

Hey I was just wondering if over the years you guys have leared what prevantative measures to take to prevent some of these terrible bacteria from getting in your lungs. I have done some research on psudomonas and b.cepacia, but nothing online tells how you can try to prevent these bugs. I know you can not prevent them completely, but I would like to know that I did all that I could. What should Lexi stay away from?
Thanks,
Melissa

lexisangels05 · Jan 28, 2009

Hey I was just wondering if over the years you guys have leared what prevantative measures to take to prevent some of these terrible bacteria from getting in your lungs. I have done some research on psudomonas and b.cepacia, but nothing online tells how you can try to prevent these bugs. I know you can not prevent them completely, but I would like to know that I did all that I could. What should Lexi stay away from?
 Thanks,
 Melissa

tammykrumrey · Jan 28, 2009

Melissa,

I am sure you already know this, but besides keeping her in a bubble, there is no way to protect her 100% from all those bacteria out there.

Since you mentioned PA and B.Cepacia, and they both grow in the environment, it is pretty hard to know exactly what to stay away from. Obviously you can't see them. But, since they can be passed between individuals who have CF, I guess the best thing you can do is to not allow her to have any contact with those who have CF. I will say that my younger daughter has cultured PA three times, and my older daughter has never cultured it...and my older daughter is presently culturing B. Cepacia, and so far my younger one has not. But they do 'share' other bacteria, such as staph and MRSA.

There are a few things that I make my girls avoid...hot tubs (I asked the girls CF dr. about them, and he said to stay away from them b/c of the high bacteria count) and places that allow smoking (not due to bacteria, of course)! I don't let them touch the elevator buttons at the hospital or dr. offices.

I do let them swim in lakes, rivers (sometimes!) oceans and pools. They help plant flowers, but get bored with it pretty fast!

I hope that helps. I know we want to protect them, but sometimes we can only do so much. I just try to let them be little girls first.

tammykrumrey · Jan 28, 2009

Melissa,

I am sure you already know this, but besides keeping her in a bubble, there is no way to protect her 100% from all those bacteria out there.

Since you mentioned PA and B.Cepacia, and they both grow in the environment, it is pretty hard to know exactly what to stay away from. Obviously you can't see them. But, since they can be passed between individuals who have CF, I guess the best thing you can do is to not allow her to have any contact with those who have CF. I will say that my younger daughter has cultured PA three times, and my older daughter has never cultured it...and my older daughter is presently culturing B. Cepacia, and so far my younger one has not. But they do 'share' other bacteria, such as staph and MRSA.

There are a few things that I make my girls avoid...hot tubs (I asked the girls CF dr. about them, and he said to stay away from them b/c of the high bacteria count) and places that allow smoking (not due to bacteria, of course)! I don't let them touch the elevator buttons at the hospital or dr. offices.

I do let them swim in lakes, rivers (sometimes!) oceans and pools. They help plant flowers, but get bored with it pretty fast!

I hope that helps. I know we want to protect them, but sometimes we can only do so much. I just try to let them be little girls first.

tammykrumrey · Jan 28, 2009

Melissa,

I am sure you already know this, but besides keeping her in a bubble, there is no way to protect her 100% from all those bacteria out there.

Since you mentioned PA and B.Cepacia, and they both grow in the environment, it is pretty hard to know exactly what to stay away from. Obviously you can't see them. But, since they can be passed between individuals who have CF, I guess the best thing you can do is to not allow her to have any contact with those who have CF. I will say that my younger daughter has cultured PA three times, and my older daughter has never cultured it...and my older daughter is presently culturing B. Cepacia, and so far my younger one has not. But they do 'share' other bacteria, such as staph and MRSA.

There are a few things that I make my girls avoid...hot tubs (I asked the girls CF dr. about them, and he said to stay away from them b/c of the high bacteria count) and places that allow smoking (not due to bacteria, of course)! I don't let them touch the elevator buttons at the hospital or dr. offices.

I do let them swim in lakes, rivers (sometimes!) oceans and pools. They help plant flowers, but get bored with it pretty fast!

I hope that helps. I know we want to protect them, but sometimes we can only do so much. I just try to let them be little girls first.

tammykrumrey · Jan 28, 2009

Melissa,

I am sure you already know this, but besides keeping her in a bubble, there is no way to protect her 100% from all those bacteria out there.

Since you mentioned PA and B.Cepacia, and they both grow in the environment, it is pretty hard to know exactly what to stay away from. Obviously you can't see them. But, since they can be passed between individuals who have CF, I guess the best thing you can do is to not allow her to have any contact with those who have CF. I will say that my younger daughter has cultured PA three times, and my older daughter has never cultured it...and my older daughter is presently culturing B. Cepacia, and so far my younger one has not. But they do 'share' other bacteria, such as staph and MRSA.

There are a few things that I make my girls avoid...hot tubs (I asked the girls CF dr. about them, and he said to stay away from them b/c of the high bacteria count) and places that allow smoking (not due to bacteria, of course)! I don't let them touch the elevator buttons at the hospital or dr. offices.

I do let them swim in lakes, rivers (sometimes!) oceans and pools. They help plant flowers, but get bored with it pretty fast!

I hope that helps. I know we want to protect them, but sometimes we can only do so much. I just try to let them be little girls first.

tammykrumrey · Jan 28, 2009

Melissa,
 
 I am sure you already know this, but besides keeping her in a bubble, there is no way to protect her 100% from all those bacteria out there.
 
 Since you mentioned PA and B.Cepacia, and they both grow in the environment, it is pretty hard to know exactly what to stay away from. Obviously you can't see them. But, since they can be passed between individuals who have CF, I guess the best thing you can do is to not allow her to have any contact with those who have CF. I will say that my younger daughter has cultured PA three times, and my older daughter has never cultured it...and my older daughter is presently culturing B. Cepacia, and so far my younger one has not. But they do 'share' other bacteria, such as staph and MRSA.
 
 There are a few things that I make my girls avoid...hot tubs (I asked the girls CF dr. about them, and he said to stay away from them b/c of the high bacteria count) and places that allow smoking (not due to bacteria, of course)! I don't let them touch the elevator buttons at the hospital or dr. offices.
 
 I do let them swim in lakes, rivers (sometimes!) oceans and pools. They help plant flowers, but get bored with it pretty fast!
 
 I hope that helps. I know we want to protect them, but sometimes we can only do so much. I just try to let them be little girls first.

mnmthomson · Jan 30, 2009

Yes there isnt much that you can do. So we have been told too. You just cant let them live in a bubble. They have got to live the life that God has given them to their full potential.
We were told that we need to make sure our house is dust free and and allergen free. We never had the bacteria problem until last August. We are taking out our carpets and replacing our heating/ac unit because they are older. So we hope this will help clear the air a bit. But we avoid hot tubs, smoke areas and hospitals. We always were a mask when we go to the doctor and ask to be put in a cleaned room immediately.
I also carry around sanatizer with me for when he does touch the buttons.
My biggest problem is at school. I cant go with him and wipe before him and after him. So that is my biggest worry. We try not to make a big deal out of it either to avoid a scene and attention he doesnt want. We try our hardest to let him live as normal as possible. But what does eveyone do with their kids who are in school? We cant just pull them everytime another kid is sick. We knew a girl who had CF and her mom pretty much put her in a bubble and she was sick all the time. She has no friends and is very secluded and not social at all. I feel very sorry for her. My husband and I feel that if we treat him just like everyone else and let him do as much as possible he will do a lot better.

mnmthomson · Jan 30, 2009

Yes there isnt much that you can do. So we have been told too. You just cant let them live in a bubble. They have got to live the life that God has given them to their full potential.
We were told that we need to make sure our house is dust free and and allergen free. We never had the bacteria problem until last August. We are taking out our carpets and replacing our heating/ac unit because they are older. So we hope this will help clear the air a bit. But we avoid hot tubs, smoke areas and hospitals. We always were a mask when we go to the doctor and ask to be put in a cleaned room immediately.
I also carry around sanatizer with me for when he does touch the buttons.
My biggest problem is at school. I cant go with him and wipe before him and after him. So that is my biggest worry. We try not to make a big deal out of it either to avoid a scene and attention he doesnt want. We try our hardest to let him live as normal as possible. But what does eveyone do with their kids who are in school? We cant just pull them everytime another kid is sick. We knew a girl who had CF and her mom pretty much put her in a bubble and she was sick all the time. She has no friends and is very secluded and not social at all. I feel very sorry for her. My husband and I feel that if we treat him just like everyone else and let him do as much as possible he will do a lot better.

mnmthomson · Jan 30, 2009

Yes there isnt much that you can do. So we have been told too. You just cant let them live in a bubble. They have got to live the life that God has given them to their full potential.
We were told that we need to make sure our house is dust free and and allergen free. We never had the bacteria problem until last August. We are taking out our carpets and replacing our heating/ac unit because they are older. So we hope this will help clear the air a bit. But we avoid hot tubs, smoke areas and hospitals. We always were a mask when we go to the doctor and ask to be put in a cleaned room immediately.
I also carry around sanatizer with me for when he does touch the buttons.
My biggest problem is at school. I cant go with him and wipe before him and after him. So that is my biggest worry. We try not to make a big deal out of it either to avoid a scene and attention he doesnt want. We try our hardest to let him live as normal as possible. But what does eveyone do with their kids who are in school? We cant just pull them everytime another kid is sick. We knew a girl who had CF and her mom pretty much put her in a bubble and she was sick all the time. She has no friends and is very secluded and not social at all. I feel very sorry for her. My husband and I feel that if we treat him just like everyone else and let him do as much as possible he will do a lot better.

mnmthomson · Jan 30, 2009

Yes there isnt much that you can do. So we have been told too. You just cant let them live in a bubble. They have got to live the life that God has given them to their full potential.
We were told that we need to make sure our house is dust free and and allergen free. We never had the bacteria problem until last August. We are taking out our carpets and replacing our heating/ac unit because they are older. So we hope this will help clear the air a bit. But we avoid hot tubs, smoke areas and hospitals. We always were a mask when we go to the doctor and ask to be put in a cleaned room immediately.
I also carry around sanatizer with me for when he does touch the buttons.
My biggest problem is at school. I cant go with him and wipe before him and after him. So that is my biggest worry. We try not to make a big deal out of it either to avoid a scene and attention he doesnt want. We try our hardest to let him live as normal as possible. But what does eveyone do with their kids who are in school? We cant just pull them everytime another kid is sick. We knew a girl who had CF and her mom pretty much put her in a bubble and she was sick all the time. She has no friends and is very secluded and not social at all. I feel very sorry for her. My husband and I feel that if we treat him just like everyone else and let him do as much as possible he will do a lot better.

mnmthomson · Jan 30, 2009

Yes there isnt much that you can do. So we have been told too. You just cant let them live in a bubble. They have got to live the life that God has given them to their full potential.
 We were told that we need to make sure our house is dust free and and allergen free. We never had the bacteria problem until last August. We are taking out our carpets and replacing our heating/ac unit because they are older. So we hope this will help clear the air a bit. But we avoid hot tubs, smoke areas and hospitals. We always were a mask when we go to the doctor and ask to be put in a cleaned room immediately.
 I also carry around sanatizer with me for when he does touch the buttons.
 My biggest problem is at school. I cant go with him and wipe before him and after him. So that is my biggest worry. We try not to make a big deal out of it either to avoid a scene and attention he doesnt want. We try our hardest to let him live as normal as possible. But what does eveyone do with their kids who are in school? We cant just pull them everytime another kid is sick. We knew a girl who had CF and her mom pretty much put her in a bubble and she was sick all the time. She has no friends and is very secluded and not social at all. I feel very sorry for her. My husband and I feel that if we treat him just like everyone else and let him do as much as possible he will do a lot better.

lexisangels05 · Feb 1, 2009

I agree, we let Lexi live a pretty regular life as well. I am still hesitant about going to busy places in the cold/flu months. CF is something we do not discuss a lot at home. Lexi thinks at this point everyone takes enzymes and does breathing treatments. We know things will change dramatically in the fall when she starts kindergarten. We just want to protect her from all the details and as many germs as we can right now.

I know some a lot of doctors focus on prevention. I have read some posts in the past that detail some of this. I have a few specific questions if you all don't mind:
1- How do you all feel about house plants. I love them and have read they can help remove some bacteria and help clean the air in your home...but what about the wet soil?
2-What about fragrances? I don't wear perfume or use a lot of air fresheners at home, but my inlaws do. Can this be an issue with inflammation?
3-I also read in someones resonse of another post about standing drinking water. Not drinking water that has been sitting out for a certain amount of time...and letting the tap water run for several minutes before bathing...ect?
4-We don't have carpet, but I wonder about the dust and allergens that can be trapped in your matress or pillow. How often do you all by new?

I think that's it for now.
Thanks guys!
Melissa

lexisangels05 · Feb 1, 2009

I agree, we let Lexi live a pretty regular life as well. I am still hesitant about going to busy places in the cold/flu months. CF is something we do not discuss a lot at home. Lexi thinks at this point everyone takes enzymes and does breathing treatments. We know things will change dramatically in the fall when she starts kindergarten. We just want to protect her from all the details and as many germs as we can right now.

I know some a lot of doctors focus on prevention. I have read some posts in the past that detail some of this. I have a few specific questions if you all don't mind:
1- How do you all feel about house plants. I love them and have read they can help remove some bacteria and help clean the air in your home...but what about the wet soil?
2-What about fragrances? I don't wear perfume or use a lot of air fresheners at home, but my inlaws do. Can this be an issue with inflammation?
3-I also read in someones resonse of another post about standing drinking water. Not drinking water that has been sitting out for a certain amount of time...and letting the tap water run for several minutes before bathing...ect?
4-We don't have carpet, but I wonder about the dust and allergens that can be trapped in your matress or pillow. How often do you all by new?

I think that's it for now.
Thanks guys!
Melissa

lexisangels05 · Feb 1, 2009

I agree, we let Lexi live a pretty regular life as well. I am still hesitant about going to busy places in the cold/flu months. CF is something we do not discuss a lot at home. Lexi thinks at this point everyone takes enzymes and does breathing treatments. We know things will change dramatically in the fall when she starts kindergarten. We just want to protect her from all the details and as many germs as we can right now.

I know some a lot of doctors focus on prevention. I have read some posts in the past that detail some of this. I have a few specific questions if you all don't mind:
1- How do you all feel about house plants. I love them and have read they can help remove some bacteria and help clean the air in your home...but what about the wet soil?
2-What about fragrances? I don't wear perfume or use a lot of air fresheners at home, but my inlaws do. Can this be an issue with inflammation?
3-I also read in someones resonse of another post about standing drinking water. Not drinking water that has been sitting out for a certain amount of time...and letting the tap water run for several minutes before bathing...ect?
4-We don't have carpet, but I wonder about the dust and allergens that can be trapped in your matress or pillow. How often do you all by new?

I think that's it for now.
Thanks guys!
Melissa

lexisangels05 · Feb 1, 2009

I agree, we let Lexi live a pretty regular life as well. I am still hesitant about going to busy places in the cold/flu months. CF is something we do not discuss a lot at home. Lexi thinks at this point everyone takes enzymes and does breathing treatments. We know things will change dramatically in the fall when she starts kindergarten. We just want to protect her from all the details and as many germs as we can right now.

I know some a lot of doctors focus on prevention. I have read some posts in the past that detail some of this. I have a few specific questions if you all don't mind:
1- How do you all feel about house plants. I love them and have read they can help remove some bacteria and help clean the air in your home...but what about the wet soil?
2-What about fragrances? I don't wear perfume or use a lot of air fresheners at home, but my inlaws do. Can this be an issue with inflammation?
3-I also read in someones resonse of another post about standing drinking water. Not drinking water that has been sitting out for a certain amount of time...and letting the tap water run for several minutes before bathing...ect?
4-We don't have carpet, but I wonder about the dust and allergens that can be trapped in your matress or pillow. How often do you all by new?

I think that's it for now.
Thanks guys!
Melissa

lexisangels05 · Feb 1, 2009

I agree, we let Lexi live a pretty regular life as well. I am still hesitant about going to busy places in the cold/flu months. CF is something we do not discuss a lot at home. Lexi thinks at this point everyone takes enzymes and does breathing treatments. We know things will change dramatically in the fall when she starts kindergarten. We just want to protect her from all the details and as many germs as we can right now.
 
 I know some a lot of doctors focus on prevention. I have read some posts in the past that detail some of this. I have a few specific questions if you all don't mind:
 1- How do you all feel about house plants. I love them and have read they can help remove some bacteria and help clean the air in your home...but what about the wet soil?
 2-What about fragrances? I don't wear perfume or use a lot of air fresheners at home, but my inlaws do. Can this be an issue with inflammation?
 3-I also read in someones resonse of another post about standing drinking water. Not drinking water that has been sitting out for a certain amount of time...and letting the tap water run for several minutes before bathing...ect?
 4-We don't have carpet, but I wonder about the dust and allergens that can be trapped in your matress or pillow. How often do you all by new?
 
 I think that's it for now.
 Thanks guys!
 Melissa

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