Cayston in Disney World

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mamaScarlett

Active member
I won't even go into how irritated I am that it worked out this way. Whatever.<br><br>So-how have you families done it? Do you go back to the room? Do you go to the first aid center? Do you sit on a bench?<br>Do you bring a sterilizer with you-or use the microwave to boil water? I was wondering if I could request a microwave and bring breast pump sterilizer bags instead, but I'm sure thats not recommended protocol.<br>When in the park, do you wipe down and then sterilize back at the room, or do you actually sterilize in the parks?<br><br>
 
M

mamaScarlett

Active member
I won't even go into how irritated I am that it worked out this way. Whatever.<br><br>So-how have you families done it? Do you go back to the room? Do you go to the first aid center? Do you sit on a bench?<br>Do you bring a sterilizer with you-or use the microwave to boil water? I was wondering if I could request a microwave and bring breast pump sterilizer bags instead, but I'm sure thats not recommended protocol.<br>When in the park, do you wipe down and then sterilize back at the room, or do you actually sterilize in the parks?<br><br>
 
M

mamaScarlett

Active member
I won't even go into how irritated I am that it worked out this way. Whatever.<br><br>So-how have you families done it? Do you go back to the room? Do you go to the first aid center? Do you sit on a bench?<br>Do you bring a sterilizer with you-or use the microwave to boil water? I was wondering if I could request a microwave and bring breast pump sterilizer bags instead, but I'm sure thats not recommended protocol.<br>When in the park, do you wipe down and then sterilize back at the room, or do you actually sterilize in the parks?<br><br>
 
R

Ratatosk

Administrator
Staff member
DS wasn't on Tobi the time we went, so we dropped down to two vest treatments a day instead of our normal 3. So we vested and nebbed in the morning before heading out. And then again went we got back to our room at night. And last time I took disposable nebs so I didn't have to mess a sterilizer... Sorry not much help.

Are you planning on going back to your room for nap time for the kids? Otherwise, IMO, take your Cayston with you, do it at the first aid station and deal with sterilizing when you get back to the room. Or I suppose since you can keep meds and equipment at the first aid station, you could sterilize at the 1st aid station. I've never used the stations before but have heard of other people taking their vests and nebs and doing treatments during the day there.
 
R

Ratatosk

Administrator
Staff member
DS wasn't on Tobi the time we went, so we dropped down to two vest treatments a day instead of our normal 3. So we vested and nebbed in the morning before heading out. And then again went we got back to our room at night. And last time I took disposable nebs so I didn't have to mess a sterilizer... Sorry not much help.

Are you planning on going back to your room for nap time for the kids? Otherwise, IMO, take your Cayston with you, do it at the first aid station and deal with sterilizing when you get back to the room. Or I suppose since you can keep meds and equipment at the first aid station, you could sterilize at the 1st aid station. I've never used the stations before but have heard of other people taking their vests and nebs and doing treatments during the day there.
 
R

Ratatosk

Administrator
Staff member
DS wasn't on Tobi the time we went, so we dropped down to two vest treatments a day instead of our normal 3. So we vested and nebbed in the morning before heading out. And then again went we got back to our room at night. And last time I took disposable nebs so I didn't have to mess a sterilizer... Sorry not much help.
<br />
<br />Are you planning on going back to your room for nap time for the kids? Otherwise, IMO, take your Cayston with you, do it at the first aid station and deal with sterilizing when you get back to the room. Or I suppose since you can keep meds and equipment at the first aid station, you could sterilize at the 1st aid station. I've never used the stations before but have heard of other people taking their vests and nebs and doing treatments during the day there.
 
R

rubyroselee

New member
When I'm on the go with my nebs, I always just bring a bottle of water with me and just rinse out the neb pieces when I'm done. Then when I get home I do a more thorough cleaning job.

As far as the afternoon dose of Cayston goes....my clinic has decided that compliance is VERY low with the afternoon dose of Cayston and has recommended that we take 1 vial in the morning and 2 vials at night (versus the standard 3x/day). I know this isn't the way the drug was 'approved', but it is the standard way to use Cayston at my clinic. Could you maybe recommend this option to your doctor?

Let me tell you, before I switched to the 1 vial morning/2 vials night, I was unintentionally forgetting the afternoon dose ALL the time. It was like my brain wasn't wired to do treatments at that time of day. Not only that, but sometimes finding the time to fit it in was ridiculously hard. It really cuts into your day because you have to stop whatever you're doing and re-arrange your life for this 3-minute treatment. Sort of annoying. So let me tell you, I totally feel your pain and I'm sorry that you have to deal with Cayston at the same time you'll be on vacation.

The other option is, that perhaps by the afternoon, you and your family will be ready for a break from Disney and you can all head back to the room for a rest, and then you can fit in your treatment then. Then you can go back to Disney afterwards and enjoy the rest of the evening there.

I'm sure it will all work out for you. Enjoy your trip!
 
R

rubyroselee

New member
When I'm on the go with my nebs, I always just bring a bottle of water with me and just rinse out the neb pieces when I'm done. Then when I get home I do a more thorough cleaning job.

As far as the afternoon dose of Cayston goes....my clinic has decided that compliance is VERY low with the afternoon dose of Cayston and has recommended that we take 1 vial in the morning and 2 vials at night (versus the standard 3x/day). I know this isn't the way the drug was 'approved', but it is the standard way to use Cayston at my clinic. Could you maybe recommend this option to your doctor?

Let me tell you, before I switched to the 1 vial morning/2 vials night, I was unintentionally forgetting the afternoon dose ALL the time. It was like my brain wasn't wired to do treatments at that time of day. Not only that, but sometimes finding the time to fit it in was ridiculously hard. It really cuts into your day because you have to stop whatever you're doing and re-arrange your life for this 3-minute treatment. Sort of annoying. So let me tell you, I totally feel your pain and I'm sorry that you have to deal with Cayston at the same time you'll be on vacation.

The other option is, that perhaps by the afternoon, you and your family will be ready for a break from Disney and you can all head back to the room for a rest, and then you can fit in your treatment then. Then you can go back to Disney afterwards and enjoy the rest of the evening there.

I'm sure it will all work out for you. Enjoy your trip!
 
R

rubyroselee

New member
When I'm on the go with my nebs, I always just bring a bottle of water with me and just rinse out the neb pieces when I'm done. Then when I get home I do a more thorough cleaning job.
<br />
<br />As far as the afternoon dose of Cayston goes....my clinic has decided that compliance is VERY low with the afternoon dose of Cayston and has recommended that we take 1 vial in the morning and 2 vials at night (versus the standard 3x/day). I know this isn't the way the drug was 'approved', but it is the standard way to use Cayston at my clinic. Could you maybe recommend this option to your doctor?
<br />
<br />Let me tell you, before I switched to the 1 vial morning/2 vials night, I was unintentionally forgetting the afternoon dose ALL the time. It was like my brain wasn't wired to do treatments at that time of day. Not only that, but sometimes finding the time to fit it in was ridiculously hard. It really cuts into your day because you have to stop whatever you're doing and re-arrange your life for this 3-minute treatment. Sort of annoying. So let me tell you, I totally feel your pain and I'm sorry that you have to deal with Cayston at the same time you'll be on vacation.
<br />
<br />The other option is, that perhaps by the afternoon, you and your family will be ready for a break from Disney and you can all head back to the room for a rest, and then you can fit in your treatment then. Then you can go back to Disney afterwards and enjoy the rest of the evening there.
<br />
<br />I'm sure it will all work out for you. Enjoy your trip!
 
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