Tap Water

melx

New member
Yes, but...
http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=39692
the article sited in this thread is unavailable but there have been other articles about cepacia in distilled water.
So it is 6 of one and a half dozen of the other.
Hard to say what to do.
I use both (tap for washing/rinsing and distilled to sterilize) daily.
 

melx

New member
Yes, but...
http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=39692
the article sited in this thread is unavailable but there have been other articles about cepacia in distilled water.
So it is 6 of one and a half dozen of the other.
Hard to say what to do.
I use both (tap for washing/rinsing and distilled to sterilize) daily.
 
J

Juniper

Guest
I was at clinic yesterday starting a course of home ivs and was asked to take in my ineb and chambers. They swabbed them as they are doing a study into what grows in them after being washed with tap water and will contact me if i need to do anything different so i'll let you know what the results come back like.
 
J

Juniper

Guest
I was at clinic yesterday starting a course of home ivs and was asked to take in my ineb and chambers. They swabbed them as they are doing a study into what grows in them after being washed with tap water and will contact me if i need to do anything different so i'll let you know what the results come back like.
 

imagine04

New member
I really believe that when they say "no" tap water they mean no tap water as a FINAL rinse. I also do not use a dishwasher as I have this fear that there is all kinds of nasties building up in there and that is certainly not any place *I* want my sons neb pieces hanging out.

For my sons neb care we do the following and he's never cultured anything new -- his baseline is few-moderate staph aureus.

1.) Hot water soak (use tap water) in a mild dish detergent for 5min
2.) Soak in distilled water/control III for 10 minutes per side (ensures that both sides of the mask and neb cup are covered)
3.) Philips Avent Sterilizer w/distilled water (we use this for NOTHING but Neb pieces) -- 2 times on cycle 1 to ensure control III has been cleaned off (plus i just personally feel better running it two times and it doesn't take very long!)
4.) Air Dry (covered w/ paper towel) for 1 1/2 - 2hrs
5.) Germ Guardian for 2 cycles (1hr total time)
6.) Seal up in our neb bin until following morning

We do extra steps (ie running the sterilizer/germ guardian 2 times) because WE feel safer doing this. I know that we probably only need to run everything once BUT again, my husband and I are much more comfortable doing it the way we have to ensure any ickies are hopefully not lingering.

Many do the "neb soup" and while I did try it I just was so tired of the cloudy residue it was leaving behind on everything, especially the neb pieces.

You can also request to see your county/townships most recent water tests which will show what the water has tested positive/negative for. My township actually has their water quality report listed online which makes it very easy to check on regularly.
 

imagine04

New member
I really believe that when they say "no" tap water they mean no tap water as a FINAL rinse. I also do not use a dishwasher as I have this fear that there is all kinds of nasties building up in there and that is certainly not any place *I* want my sons neb pieces hanging out.

For my sons neb care we do the following and he's never cultured anything new -- his baseline is few-moderate staph aureus.

1.) Hot water soak (use tap water) in a mild dish detergent for 5min
2.) Soak in distilled water/control III for 10 minutes per side (ensures that both sides of the mask and neb cup are covered)
3.) Philips Avent Sterilizer w/distilled water (we use this for NOTHING but Neb pieces) -- 2 times on cycle 1 to ensure control III has been cleaned off (plus i just personally feel better running it two times and it doesn't take very long!)
4.) Air Dry (covered w/ paper towel) for 1 1/2 - 2hrs
5.) Germ Guardian for 2 cycles (1hr total time)
6.) Seal up in our neb bin until following morning

We do extra steps (ie running the sterilizer/germ guardian 2 times) because WE feel safer doing this. I know that we probably only need to run everything once BUT again, my husband and I are much more comfortable doing it the way we have to ensure any ickies are hopefully not lingering.

Many do the "neb soup" and while I did try it I just was so tired of the cloudy residue it was leaving behind on everything, especially the neb pieces.

You can also request to see your county/townships most recent water tests which will show what the water has tested positive/negative for. My township actually has their water quality report listed online which makes it very easy to check on regularly.
 

imagine04

New member
I have to also note that the brain eating amoeba entered through the sinuses by using straight tap water in what one can only assume was already an unsterilized netti pot. If you take the proper steps in sterilizing neb pieces, and not just using plain ol' tap water to clean them, I'm sure the chances of ending up with something like a brain eating amoeba are very, very, very low.
 

imagine04

New member
I have to also note that the brain eating amoeba entered through the sinuses by using straight tap water in what one can only assume was already an unsterilized netti pot. If you take the proper steps in sterilizing neb pieces, and not just using plain ol' tap water to clean them, I'm sure the chances of ending up with something like a brain eating amoeba are very, very, very low.
 
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