Many questions--1 post

M

MaksNana

New member
Ricki,,,,Yes, my clinic has told us how to clean her nebs, but also how to clean her toys, etc. And vinegar was an abosolute no with nebs and discouraged with house cleaning or toy cleaning!!! Who knows , with how complex this disease is, next week the guide lines can change again !!! /Even when they changed the guidelines for the vinigar, just for the neb cleaning ,it took a couple of years to take it out of their pamphlet's...

I know clorox is very strong smelling,(and I agree), but that is the recommended guidelines to sterilize with, is clorox...... Pinesol, lysol, has a strong smell, I wonder who really knows what to use exactly.......

But, you have to think about it,,,,,,,,,,,, if they stopped the vinegar for neb cleaning ,but now you can use clorox, it make's you wonder. We were told if vinegar could no longer be used for neb cleaning,,,,,,, wouldn't it make a LITTLE BIT OF SENCE NOT TO USE IT FOR CLEANING YOUR WHOLE HOUSE, AND WHAT EVER ELSE IT MIGHT BE USED TO CLEAN WITH???????

I'm sure of one thing,,,,,,,,,,,,mom to ashley,,,,,,,,, didn't post for help , for people to have negative things said ,or any conflict. Like I said ,,,,,,,,,, we all need all the support we can get from each other,,,,,,, and there are KINDER WAYS TO DISAGREE .........

This site is for all of us to try and help each other !!!! Not hurt one another!!!
We can take or leave what we want...... I'm not saying I'm perfect nor know all the answers.....


I stated what my CF Center told us years ago........ , and every little bit can't hurt ,,,,,,, and I totally agree. I feel like I could make myself nuts with all the things I do to try to prevent pathogens ,or anything that could damage her lungs.

I'll say it a million times,,,,,,,,,,,,,, this is a COMPLEX DISEASE,,,, (I hate it),,,,,,,, we can do all we can ,and I do, and I will never stop doing all I can do, but even with that when you look at the things Makailyn has ,it didn't stop it. There's been so much more that she has had there's not room to post it at the bottom. And now she's in for the fight of her life with her Pancreas problems........

I made it perfectly clear that the mom can talk with her CF Clinic about what they think is the best way to clean.You might have to talk verbally regarding other things,,,,,,,,that certainly doesn't mean it's not true!!!

I truly wish you and your family well, Karla
 
M

MaksNana

New member
Ricki,,,,Yes, my clinic has told us how to clean her nebs, but also how to clean her toys, etc. And vinegar was an abosolute no with nebs and discouraged with house cleaning or toy cleaning!!! Who knows , with how complex this disease is, next week the guide lines can change again !!! /Even when they changed the guidelines for the vinigar, just for the neb cleaning ,it took a couple of years to take it out of their pamphlet's...

I know clorox is very strong smelling,(and I agree), but that is the recommended guidelines to sterilize with, is clorox...... Pinesol, lysol, has a strong smell, I wonder who really knows what to use exactly.......

But, you have to think about it,,,,,,,,,,,, if they stopped the vinegar for neb cleaning ,but now you can use clorox, it make's you wonder. We were told if vinegar could no longer be used for neb cleaning,,,,,,, wouldn't it make a LITTLE BIT OF SENCE NOT TO USE IT FOR CLEANING YOUR WHOLE HOUSE, AND WHAT EVER ELSE IT MIGHT BE USED TO CLEAN WITH???????

I'm sure of one thing,,,,,,,,,,,,mom to ashley,,,,,,,,, didn't post for help , for people to have negative things said ,or any conflict. Like I said ,,,,,,,,,, we all need all the support we can get from each other,,,,,,, and there are KINDER WAYS TO DISAGREE .........

This site is for all of us to try and help each other !!!! Not hurt one another!!!
We can take or leave what we want...... I'm not saying I'm perfect nor know all the answers.....


I stated what my CF Center told us years ago........ , and every little bit can't hurt ,,,,,,, and I totally agree. I feel like I could make myself nuts with all the things I do to try to prevent pathogens ,or anything that could damage her lungs.

I'll say it a million times,,,,,,,,,,,,,, this is a COMPLEX DISEASE,,,, (I hate it),,,,,,,, we can do all we can ,and I do, and I will never stop doing all I can do, but even with that when you look at the things Makailyn has ,it didn't stop it. There's been so much more that she has had there's not room to post it at the bottom. And now she's in for the fight of her life with her Pancreas problems........

I made it perfectly clear that the mom can talk with her CF Clinic about what they think is the best way to clean.You might have to talk verbally regarding other things,,,,,,,,that certainly doesn't mean it's not true!!!

I truly wish you and your family well, Karla
 
M

MaksNana

New member
Ricki,,,,Yes, my clinic has told us how to clean her nebs, but also how to clean her toys, etc. And vinegar was an abosolute no with nebs and discouraged with house cleaning or toy cleaning!!! Who knows , with how complex this disease is, next week the guide lines can change again !!! /Even when they changed the guidelines for the vinigar, just for the neb cleaning ,it took a couple of years to take it out of their pamphlet's...

I know clorox is very strong smelling,(and I agree), but that is the recommended guidelines to sterilize with, is clorox...... Pinesol, lysol, has a strong smell, I wonder who really knows what to use exactly.......

But, you have to think about it,,,,,,,,,,,, if they stopped the vinegar for neb cleaning ,but now you can use clorox, it make's you wonder. We were told if vinegar could no longer be used for neb cleaning,,,,,,, wouldn't it make a LITTLE BIT OF SENCE NOT TO USE IT FOR CLEANING YOUR WHOLE HOUSE, AND WHAT EVER ELSE IT MIGHT BE USED TO CLEAN WITH???????

I'm sure of one thing,,,,,,,,,,,,mom to ashley,,,,,,,,, didn't post for help , for people to have negative things said ,or any conflict. Like I said ,,,,,,,,,, we all need all the support we can get from each other,,,,,,, and there are KINDER WAYS TO DISAGREE .........

This site is for all of us to try and help each other !!!! Not hurt one another!!!
We can take or leave what we want...... I'm not saying I'm perfect nor know all the answers.....


I stated what my CF Center told us years ago........ , and every little bit can't hurt ,,,,,,, and I totally agree. I feel like I could make myself nuts with all the things I do to try to prevent pathogens ,or anything that could damage her lungs.

I'll say it a million times,,,,,,,,,,,,,, this is a COMPLEX DISEASE,,,, (I hate it),,,,,,,, we can do all we can ,and I do, and I will never stop doing all I can do, but even with that when you look at the things Makailyn has ,it didn't stop it. There's been so much more that she has had there's not room to post it at the bottom. And now she's in for the fight of her life with her Pancreas problems........

I made it perfectly clear that the mom can talk with her CF Clinic about what they think is the best way to clean.You might have to talk verbally regarding other things,,,,,,,,that certainly doesn't mean it's not true!!!

I truly wish you and your family well, Karla
 
M

MaksNana

New member
Ricki,,,,Yes, my clinic has told us how to clean her nebs, but also how to clean her toys, etc. And vinegar was an abosolute no with nebs and discouraged with house cleaning or toy cleaning!!! Who knows , with how complex this disease is, next week the guide lines can change again !!! /Even when they changed the guidelines for the vinigar, just for the neb cleaning ,it took a couple of years to take it out of their pamphlet's...

I know clorox is very strong smelling,(and I agree), but that is the recommended guidelines to sterilize with, is clorox...... Pinesol, lysol, has a strong smell, I wonder who really knows what to use exactly.......

But, you have to think about it,,,,,,,,,,,, if they stopped the vinegar for neb cleaning ,but now you can use clorox, it make's you wonder. We were told if vinegar could no longer be used for neb cleaning,,,,,,, wouldn't it make a LITTLE BIT OF SENCE NOT TO USE IT FOR CLEANING YOUR WHOLE HOUSE, AND WHAT EVER ELSE IT MIGHT BE USED TO CLEAN WITH???????

I'm sure of one thing,,,,,,,,,,,,mom to ashley,,,,,,,,, didn't post for help , for people to have negative things said ,or any conflict. Like I said ,,,,,,,,,, we all need all the support we can get from each other,,,,,,, and there are KINDER WAYS TO DISAGREE .........

This site is for all of us to try and help each other !!!! Not hurt one another!!!
We can take or leave what we want...... I'm not saying I'm perfect nor know all the answers.....


I stated what my CF Center told us years ago........ , and every little bit can't hurt ,,,,,,, and I totally agree. I feel like I could make myself nuts with all the things I do to try to prevent pathogens ,or anything that could damage her lungs.

I'll say it a million times,,,,,,,,,,,,,, this is a COMPLEX DISEASE,,,, (I hate it),,,,,,,, we can do all we can ,and I do, and I will never stop doing all I can do, but even with that when you look at the things Makailyn has ,it didn't stop it. There's been so much more that she has had there's not room to post it at the bottom. And now she's in for the fight of her life with her Pancreas problems........

I made it perfectly clear that the mom can talk with her CF Clinic about what they think is the best way to clean.You might have to talk verbally regarding other things,,,,,,,,that certainly doesn't mean it's not true!!!

I truly wish you and your family well, Karla
 
M

MaksNana

New member
Ricki,,,,Yes, my clinic has told us how to clean her nebs, but also how to clean her toys, etc. And vinegar was an abosolute no with nebs and discouraged with house cleaning or toy cleaning!!! Who knows , with how complex this disease is, next week the guide lines can change again !!! /Even when they changed the guidelines for the vinigar, just for the neb cleaning ,it took a couple of years to take it out of their pamphlet's...
<br />
<br />I know clorox is very strong smelling,(and I agree), but that is the recommended guidelines to sterilize with, is clorox...... Pinesol, lysol, has a strong smell, I wonder who really knows what to use exactly.......
<br />
<br />But, you have to think about it,,,,,,,,,,,, if they stopped the vinegar for neb cleaning ,but now you can use clorox, it make's you wonder. We were told if vinegar could no longer be used for neb cleaning,,,,,,, wouldn't it make a LITTLE BIT OF SENCE NOT TO USE IT FOR CLEANING YOUR WHOLE HOUSE, AND WHAT EVER ELSE IT MIGHT BE USED TO CLEAN WITH???????
<br />
<br />I'm sure of one thing,,,,,,,,,,,,mom to ashley,,,,,,,,, didn't post for help , for people to have negative things said ,or any conflict. Like I said ,,,,,,,,,, we all need all the support we can get from each other,,,,,,, and there are KINDER WAYS TO DISAGREE .........
<br />
<br />This site is for all of us to try and help each other !!!! Not hurt one another!!!
<br />We can take or leave what we want...... I'm not saying I'm perfect nor know all the answers.....
<br />
<br />
<br />I stated what my CF Center told us years ago........ , and every little bit can't hurt ,,,,,,, and I totally agree. I feel like I could make myself nuts with all the things I do to try to prevent pathogens ,or anything that could damage her lungs.
<br />
<br /> I'll say it a million times,,,,,,,,,,,,,, this is a COMPLEX DISEASE,,,, (I hate it),,,,,,,, we can do all we can ,and I do, and I will never stop doing all I can do, but even with that when you look at the things Makailyn has ,it didn't stop it. There's been so much more that she has had there's not room to post it at the bottom. And now she's in for the fight of her life with her Pancreas problems........
<br />
<br />I made it perfectly clear that the mom can talk with her CF Clinic about what they think is the best way to clean.You might have to talk verbally regarding other things,,,,,,,,that certainly doesn't mean it's not true!!!
<br />
<br />I truly wish you and your family well, Karla
 
F

Fran

New member
Still off topic ....
I'm sure we've all had much conflicting advice from many different health professionals. I was told that only bleach will kill pseudomonas, then told bleach is too irritating to airways... then to feed my son lots of fat, then maybe not so much fat since he is a little porker, so who do you listen to?

And there is really no way of knowing who is correct.

So, maybe we should listen and appreciate different points of view and go with what suits our own cfer as they are all so different.

Good luck everyone!
 
F

Fran

New member
Still off topic ....
I'm sure we've all had much conflicting advice from many different health professionals. I was told that only bleach will kill pseudomonas, then told bleach is too irritating to airways... then to feed my son lots of fat, then maybe not so much fat since he is a little porker, so who do you listen to?

And there is really no way of knowing who is correct.

So, maybe we should listen and appreciate different points of view and go with what suits our own cfer as they are all so different.

Good luck everyone!
 
F

Fran

New member
Still off topic ....
I'm sure we've all had much conflicting advice from many different health professionals. I was told that only bleach will kill pseudomonas, then told bleach is too irritating to airways... then to feed my son lots of fat, then maybe not so much fat since he is a little porker, so who do you listen to?

And there is really no way of knowing who is correct.

So, maybe we should listen and appreciate different points of view and go with what suits our own cfer as they are all so different.

Good luck everyone!
 
F

Fran

New member
Still off topic ....
I'm sure we've all had much conflicting advice from many different health professionals. I was told that only bleach will kill pseudomonas, then told bleach is too irritating to airways... then to feed my son lots of fat, then maybe not so much fat since he is a little porker, so who do you listen to?

And there is really no way of knowing who is correct.

So, maybe we should listen and appreciate different points of view and go with what suits our own cfer as they are all so different.

Good luck everyone!
 
F

Fran

New member
Still off topic ....
<br />I'm sure we've all had much conflicting advice from many different health professionals. I was told that only bleach will kill pseudomonas, then told bleach is too irritating to airways... then to feed my son lots of fat, then maybe not so much fat since he is a little porker, so who do you listen to?
<br />
<br />And there is really no way of knowing who is correct.
<br />
<br />So, maybe we should listen and appreciate different points of view and go with what suits our own cfer as they are all so different.
<br />
<br />Good luck everyone!
<br />
<br />
 
R

Ratatosk

Administrator
Staff member
DS has had xrays from the local hospital which have indicated bronchial thickening and infiltration (pneumonia) with no symptoms. However, when his doctor in the City became concerned with the radiology reports he ordered a CT scan, which indicated his lungs were clear. He's also had a lung scan in the City as well which have shown he didn't have broncial thickening. We're not sure what the deal is with our local radiology department, but have opted not to have his annual xrays done at the local facility being that they haven't shown a clear report yet. But that's just our situation.

As for the vinegar -- the other day my MIL told me that she saw on some talk show that she should use vinegar to clean all her sponges, to which I replied -- vinegar won't sterilize them. That's why it's no longer used on nebs. When we're at their lake home I'm forever tossing sponges
AND grabbing a fresh dishrag every time I do dishes because otherwise she leaves them sit over night and they not only get smelly (mildew) in that humid climate, but I'm sure they're full of germs.
 
R

Ratatosk

Administrator
Staff member
DS has had xrays from the local hospital which have indicated bronchial thickening and infiltration (pneumonia) with no symptoms. However, when his doctor in the City became concerned with the radiology reports he ordered a CT scan, which indicated his lungs were clear. He's also had a lung scan in the City as well which have shown he didn't have broncial thickening. We're not sure what the deal is with our local radiology department, but have opted not to have his annual xrays done at the local facility being that they haven't shown a clear report yet. But that's just our situation.

As for the vinegar -- the other day my MIL told me that she saw on some talk show that she should use vinegar to clean all her sponges, to which I replied -- vinegar won't sterilize them. That's why it's no longer used on nebs. When we're at their lake home I'm forever tossing sponges
AND grabbing a fresh dishrag every time I do dishes because otherwise she leaves them sit over night and they not only get smelly (mildew) in that humid climate, but I'm sure they're full of germs.
 
R

Ratatosk

Administrator
Staff member
DS has had xrays from the local hospital which have indicated bronchial thickening and infiltration (pneumonia) with no symptoms. However, when his doctor in the City became concerned with the radiology reports he ordered a CT scan, which indicated his lungs were clear. He's also had a lung scan in the City as well which have shown he didn't have broncial thickening. We're not sure what the deal is with our local radiology department, but have opted not to have his annual xrays done at the local facility being that they haven't shown a clear report yet. But that's just our situation.

As for the vinegar -- the other day my MIL told me that she saw on some talk show that she should use vinegar to clean all her sponges, to which I replied -- vinegar won't sterilize them. That's why it's no longer used on nebs. When we're at their lake home I'm forever tossing sponges
AND grabbing a fresh dishrag every time I do dishes because otherwise she leaves them sit over night and they not only get smelly (mildew) in that humid climate, but I'm sure they're full of germs.
 
R

Ratatosk

Administrator
Staff member
DS has had xrays from the local hospital which have indicated bronchial thickening and infiltration (pneumonia) with no symptoms. However, when his doctor in the City became concerned with the radiology reports he ordered a CT scan, which indicated his lungs were clear. He's also had a lung scan in the City as well which have shown he didn't have broncial thickening. We're not sure what the deal is with our local radiology department, but have opted not to have his annual xrays done at the local facility being that they haven't shown a clear report yet. But that's just our situation.

As for the vinegar -- the other day my MIL told me that she saw on some talk show that she should use vinegar to clean all her sponges, to which I replied -- vinegar won't sterilize them. That's why it's no longer used on nebs. When we're at their lake home I'm forever tossing sponges
AND grabbing a fresh dishrag every time I do dishes because otherwise she leaves them sit over night and they not only get smelly (mildew) in that humid climate, but I'm sure they're full of germs.
 
R

Ratatosk

Administrator
Staff member
DS has had xrays from the local hospital which have indicated bronchial thickening and infiltration (pneumonia) with no symptoms. However, when his doctor in the City became concerned with the radiology reports he ordered a CT scan, which indicated his lungs were clear. He's also had a lung scan in the City as well which have shown he didn't have broncial thickening. We're not sure what the deal is with our local radiology department, but have opted not to have his annual xrays done at the local facility being that they haven't shown a clear report yet. But that's just our situation.
<br />
<br />As for the vinegar -- the other day my MIL told me that she saw on some talk show that she should use vinegar to clean all her sponges, to which I replied -- vinegar won't sterilize them. That's why it's no longer used on nebs. When we're at their lake home I'm forever tossing sponges
<br />AND grabbing a fresh dishrag every time I do dishes because otherwise she leaves them sit over night and they not only get smelly (mildew) in that humid climate, but I'm sure they're full of germs.
 
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