Doing cayston on the go

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mamaScarlett

Active member
Currently doing month on/month off Cayston. Figuring out how to handle it when I'm out is tough. There's alot of conflicting info on how to sanitize properly, how long is ok to wait before cleaning the Altera, etc.
The CFF's Altera cleaning video and Cf pharms instructions state washing with clear dish soap and tap water is fine, then sterilizing. That's what I do. When out though, sometimes I can't clean the Altera for hours. Should I be wiping down with alcohol then washing and sterilizing when I get home?
I'm going on a small vaca to Disney and bringing 3 headsets with me. I can wash the AM and PM dose headset right away. But the midday dose headset of course I can't sterilize till I get back to the room in the evening.
Not sure what to do.
 
M

mamaScarlett

Active member
Currently doing month on/month off Cayston. Figuring out how to handle it when I'm out is tough. There's alot of conflicting info on how to sanitize properly, how long is ok to wait before cleaning the Altera, etc.
The CFF's Altera cleaning video and Cf pharms instructions state washing with clear dish soap and tap water is fine, then sterilizing. That's what I do. When out though, sometimes I can't clean the Altera for hours. Should I be wiping down with alcohol then washing and sterilizing when I get home?
I'm going on a small vaca to Disney and bringing 3 headsets with me. I can wash the AM and PM dose headset right away. But the midday dose headset of course I can't sterilize till I get back to the room in the evening.
Not sure what to do.
 
V

vivsmom

New member
mamaScarlett,
I also do a month on and off Cayston and I travel quite a bit. I bring with me a small ziplok container (just the right size to put the neb in it when taken apart) along with that I have a travel size bottle with dish soap. So, after I finish the treatment, I rinse the neb, wash it in the container and shake off as much water as I can (if I can let it air dry for a bit, even better). The I close the container and put it back in my bag. As soon as I get home, I sterilize it. It has worked for me so far.

vivsmom
newly diagnosed with CF at 55, yes 55! D508 and Arg347
 
V

vivsmom

New member
mamaScarlett,
I also do a month on and off Cayston and I travel quite a bit. I bring with me a small ziplok container (just the right size to put the neb in it when taken apart) along with that I have a travel size bottle with dish soap. So, after I finish the treatment, I rinse the neb, wash it in the container and shake off as much water as I can (if I can let it air dry for a bit, even better). The I close the container and put it back in my bag. As soon as I get home, I sterilize it. It has worked for me so far.

vivsmom
newly diagnosed with CF at 55, yes 55! D508 and Arg347
 
K

Kristen

New member
My understanding is that we do not have to sterilize right away. I use three handsets a day and clean each one with tap water and dish soap right away, but then I put them on a paper towel until the end of the day, when I sterilize all three handsets at the same time.

However, I will also admit that I have had this issue with traveling too I have gone hours (and hours) before cleaning it at all. I'm not sure how bad this is from a germs standpoint, but as far as the risk of clogging the membrane goes, it still worked. But, I'm trying to be better and now usually try to find a sink and wash as vivsmom does and then sterilize when I get home.
 
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Kristen

New member
My understanding is that we do not have to sterilize right away. I use three handsets a day and clean each one with tap water and dish soap right away, but then I put them on a paper towel until the end of the day, when I sterilize all three handsets at the same time.

However, I will also admit that I have had this issue with traveling too I have gone hours (and hours) before cleaning it at all. I'm not sure how bad this is from a germs standpoint, but as far as the risk of clogging the membrane goes, it still worked. But, I'm trying to be better and now usually try to find a sink and wash as vivsmom does and then sterilize when I get home.
 
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Mom2Brinly

New member
We took a Disney trip when my 7 year old was on Cayston and we did it right in the corner of a resting area! When we were done i put the head into a tub of rubbing alcohol and poured bottled water over the rest of the neb. I then wiped it down with rubbing achohol wipes until we got back to the hotel- it worked fine!
Also-- go to the mayors office in Magic Kingdom and get a front fast pass available for those with disabilites- no proof of anything required but i did show them the Cayston neb pack for proof! We got in every ride first and got to ride populare rides multiply times!! It is good for everyone in the family!!!

Have Fun!
Blythe
Mom2Brinly 7 y/o with CF
 
M

Mom2Brinly

New member
We took a Disney trip when my 7 year old was on Cayston and we did it right in the corner of a resting area! When we were done i put the head into a tub of rubbing alcohol and poured bottled water over the rest of the neb. I then wiped it down with rubbing achohol wipes until we got back to the hotel- it worked fine!
Also-- go to the mayors office in Magic Kingdom and get a front fast pass available for those with disabilites- no proof of anything required but i did show them the Cayston neb pack for proof! We got in every ride first and got to ride populare rides multiply times!! It is good for everyone in the family!!!

Have Fun!
Blythe
Mom2Brinly 7 y/o with CF
 
M

mamaScarlett

Active member
Thank you all. I am going to wash it best I can, bring a tiny plastic container into the park and wash the metal head part at least then sterilize everything when we get to the hotel at night.
Now-Do I really have to bring this big sterilizer down there? Or can I request a microwave and use steam sterilizer bags (like I use for my breastpump parts) and sterilize in the microwave?
 
M

mamaScarlett

Active member
Thank you all. I am going to wash it best I can, bring a tiny plastic container into the park and wash the metal head part at least then sterilize everything when we get to the hotel at night.
Now-Do I really have to bring this big sterilizer down there? Or can I request a microwave and use steam sterilizer bags (like I use for my breastpump parts) and sterilize in the microwave?
 
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LouLou

New member
Just submerge the head in water while at the park. Once you are back in your room, clean the head and the plastic pieces in warm water with dishsoap (I stick with Sunlight) Don't use antibacterial or creamy soaps! Then sterilize. I do the same thing at home. I have a rubbermaid container that I fill halfway with water, I clean and sterilize once a day in the evening.

Mom2Lillian turned me on to this because she was figuring out what to do with her handset when she did her middle of the day treatment. Her solution was to have a water bottle in the car. Once she is done with her treatment she sinks the handset in the water. This keeps the head from clogging.
 
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LouLou

New member
Just submerge the head in water while at the park. Once you are back in your room, clean the head and the plastic pieces in warm water with dishsoap (I stick with Sunlight) Don't use antibacterial or creamy soaps! Then sterilize. I do the same thing at home. I have a rubbermaid container that I fill halfway with water, I clean and sterilize once a day in the evening.

Mom2Lillian turned me on to this because she was figuring out what to do with her handset when she did her middle of the day treatment. Her solution was to have a water bottle in the car. Once she is done with her treatment she sinks the handset in the water. This keeps the head from clogging.
 
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Kristen

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mamaScarlett</b></i> Thank you all. I am going to wash it best I can, bring a tiny plastic container into the park and wash the metal head part at least then sterilize everything when we get to the hotel at night. Now-Do I really have to bring this big sterilizer down there? Or can I request a microwave and use steam sterilizer bags (like I use for my breastpump parts) and sterilize in the microwave?</end quote>
I am almost positive that you cannot sterilize the head in the microwave. I have packed the baby bottle sterilizer when I've traveled. A major pain in the butt, but I don't know what else to do!
 
K

Kristen

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mamaScarlett</b></i> Thank you all. I am going to wash it best I can, bring a tiny plastic container into the park and wash the metal head part at least then sterilize everything when we get to the hotel at night. Now-Do I really have to bring this big sterilizer down there? Or can I request a microwave and use steam sterilizer bags (like I use for my breastpump parts) and sterilize in the microwave?</end quote>
I am almost positive that you cannot sterilize the head in the microwave. I have packed the baby bottle sterilizer when I've traveled. A major pain in the butt, but I don't know what else to do!
 
2

2005CFmom

Super Moderator
If you didn't know, Disney has First Aid stations at each park. You can store any medical equipment with them if you don't want to carry it around. They can even provide a space to do treatments if you need it.
 
2

2005CFmom

Super Moderator
If you didn't know, Disney has First Aid stations at each park. You can store any medical equipment with them if you don't want to carry it around. They can even provide a space to do treatments if you need it.
 
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LouLou

New member
Two things:
The original manufacturer of the Eflow said not to use antibacterial because of residue issue I believe.
I do not steam sterilize the head in the steamer? Do you all? Why do that...isnt' that the point of the alcohol bath we all are directed to leave the head in when it is not in use?
 
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LouLou

New member
Two things:
The original manufacturer of the Eflow said not to use antibacterial because of residue issue I believe.
I do not steam sterilize the head in the steamer? Do you all? Why do that...isnt' that the point of the alcohol bath we all are directed to leave the head in when it is not in use?
 
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