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Proneb Ultra and Tobi

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My home health care company just delivered our nebulizer, but I

thought it was supposed to be a PARI LC PLUS. They said the Proneb

Ultra is a new kind of nebulizer and I was the first one to have

it.

Anyone using this nebulizer for TOBI?

Sara - mommy of Zach 21 months Saturday

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Hi Sara,

We've been using a Proneb Ultra Deluxe for a couple of weeks now

(since we burned the motor out on s Proneb Turbo). It seems

to have about the same level of efficacy with the Tobi as the Turbo

model. They both seem to be decent little machines, unfortunately,

they don't seem to hold up well with all the extra treatments that

has been having. The Proneb Turbo model lasted just a bit

less than a year.....hopefully the Ultra will last a bit longer

lol. I would think that under normal usage conditions that it would

be a great little machine.

Tammy

mom to 14yowcf

> My home health care company just delivered our nebulizer, but I

> thought it was supposed to be a PARI LC PLUS. They said the

Proneb

> Ultra is a new kind of nebulizer and I was the first one to have

> it.

> Anyone using this nebulizer for TOBI?

> Sara - mommy of Zach 21 months Saturday

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Great. Thanks for the info. I have never used a nebulizer before

and was worried about making a mistake with his medicine.

Sara

> > My home health care company just delivered our nebulizer, but I

> > thought it was supposed to be a PARI LC PLUS. They said the

> Proneb

> > Ultra is a new kind of nebulizer and I was the first one to have

> > it.

> > Anyone using this nebulizer for TOBI?

> > Sara - mommy of Zach 21 months Saturday

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Sara,

Sara,

Are you referring to the compressor or the actual neb? Our

compressor is a ProNeb Ultra but the nebulizer that you will put the

Tobi in should be a Pari LC Plus. That is what is recommended by

Tobi. Of course there could easily be something new that I don't

know about. I was taught some good tips by folks on this list when

we were giving Tobi to Abby the first time:

1.) If it's a Pari and you're using a mask, remove the cap from the

neb or you'll be there all day. It seems like you're wasting

medicine but I guess they figure that in. It should take about 15-18

minutes with the ProNeb Ultra compressor. If Zach won't be still and

you feel like you're totally wasting the drug you can do it while

he's asleep if you have too. They don't like it being done that way

because they supposedly don't breathe as deep when sleeping but you

have to make a judgement call. I know I got more in Abby that way

than when she fought the whole time. We would always try it a few

times while awake - mostly successfully - (a.m. she had to be

awake).

2.) Let the compressor blow through the hose alone for several

minutes after each usage in order to make sure the condensation

inside it is dried up. When we know it's dry we usually wind it up

and store it in a Zip-Loc.

3.) Use Control III disinfectant to sanitize the neb every other

day. Not vinegar. Wash it with warm soapy water after each use.

Then SHAKE it until you think your wrist is breaking in order to get

all the droplets of water off and lie the parts out on several clean,

dry paper towels. We usually put one or two on top to keep any dust

off. After it dries COMPLETELY, put it together and store it in a

sanitary container until next use. It seems like overkill but the

last thing you want to do is send aerosolized bacteria into Zach's

lungs. Main thing that should help you is to know that Pa " dies when

it dries " .

Good luck to you.

Joe (Dad to Kelsi,7; Chloe,2 1/2; and Abby 15mos. w/cf)

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Joe,

Thanks for the advice.

Our nebulizer kit says Pari Baby. It does not say LC Plus. My cf

coordinator will be checking to see if this is ok.

Our first experience was truly horrible. Zach screamed the whole

time. It was just like our first CPT experience but now he is so

much stronger and mobile. He fought with every ounce of his skinny

little body. Towards the end I took the mask off and just held it

in front of his face and he tried to hold it himself, so we ended on

a calm note. Zach has a tendency to reject anything new. I tried

everything I could think of to ease him into it. We played with

surgical masks yesterday and we let his cpt doll do the nebulizer

first, but he went ballistic when it was his turn. He also hates

loud noises. The compressor is so loud. He is such a light sleeper

that we do not make a peep if he is sleeping. My mother in law

cannot even read a newspaper in the same room with him sleeping or

he will wake up from hearing her turn the pages. He was born so

premature that we think he has trouble with overstimulation. I am

afraid to turn the compressor on if he is sleeping because he will

wake up and it is so hard to get him to fall asleep again.

Eventually Zach relented and CPT is just routine now. I am afraid

that if he accepts the TOBI treatment, it will be time to stop and

we will start over again another time and deal with the same

rejection issues.

I will use your cleaning techniques. The home health care rep told

me specifically to soak it in vinegar after each treatment and the

cf clinic said that we should NOT do that. Confusing. Where do you

buy Control III? In the meantime I will be boiling the parts every

other day. I understand that is acceptable for disinfectant also.

I am also getting two nebulizer kits. One can be clean and

disinfected while the other needs to be cleaned. We did this when I

had to rent a breast pump. It is much more convienent to have spare

parts, even though it is not cheap.

Thanks again for the advice. Is Abby only on TOBI or does she have

other inhaled meds?

Sara

> Sara,

>

> Sara,

>

> Are you referring to the compressor or the actual neb? Our

> compressor is a ProNeb Ultra but the nebulizer that you will put

the

> Tobi in should be a Pari LC Plus. That is what is recommended by

> Tobi. Of course there could easily be something new that I don't

> know about. I was taught some good tips by folks on this list

when

> we were giving Tobi to Abby the first time:

>

> 1.) If it's a Pari and you're using a mask, remove the cap from

the

> neb or you'll be there all day. It seems like you're wasting

> medicine but I guess they figure that in. It should take about 15-

18

> minutes with the ProNeb Ultra compressor. If Zach won't be still

and

> you feel like you're totally wasting the drug you can do it while

> he's asleep if you have too. They don't like it being done that

way

> because they supposedly don't breathe as deep when sleeping but

you

> have to make a judgement call. I know I got more in Abby that way

> than when she fought the whole time. We would always try it a few

> times while awake - mostly successfully - (a.m. she had to be

> awake).

>

>

> 2.) Let the compressor blow through the hose alone for several

> minutes after each usage in order to make sure the condensation

> inside it is dried up. When we know it's dry we usually wind it

up

> and store it in a Zip-Loc.

>

>

> 3.) Use Control III disinfectant to sanitize the neb every other

> day. Not vinegar. Wash it with warm soapy water after each use.

> Then SHAKE it until you think your wrist is breaking in order to

get

> all the droplets of water off and lie the parts out on several

clean,

> dry paper towels. We usually put one or two on top to keep any

dust

> off. After it dries COMPLETELY, put it together and store it in a

> sanitary container until next use. It seems like overkill but the

> last thing you want to do is send aerosolized bacteria into

Zach's

> lungs. Main thing that should help you is to know that Pa " dies

when

> it dries " .

>

>

>

> Good luck to you.

>

> Joe (Dad to Kelsi,7; Chloe,2 1/2; and Abby 15mos. w/cf)

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Sara,

I didn't realize you had done this before. The Pari Baby has a

little mask that you have to hold over his face (this is all coming

back). That isn't what you want for Zach. You want the " fish "

mask. It's great because it has a strap. If you read the back of

the Pari, you'll see it as an accessory. The neb parts are all the

same - even with the Pari Baby - they are all a standard Pari neb.

The Pari Baby has the rigid mask you have to hold, then there's the

fish mask and of course the LC Plus has the mouthpiece. All of which

come off - leaving the same neb.

No Abby isn't on any inhaled meds now. We have clinic next week.

She grew some intermittant Pa a couple of times and has had 3 rounds

of Tobi since being diagnosed in Jan.

I forgot about having the extra neb in rotation. That helps.

Control III was sent to us along with our equipment (nebs etc.).

Guess you could request some. They'll know what it is. We boiled

after we ran out of it. Boiling's fine. I was straightened out

quick about vinegar on this list. It is not a disinfectant.

Maybe the fish mask will work for you and Zach. We'd hold Abby on

our knees facing out with a catchy sing-along tape, like the Wiggles,

and slightly bounce to the music. Her mother was a lot better at

that than me and had good success. Especially in the morning.

Joe

> > Sara,

> >

> > Sara,

> >

> > Are you referring to the compressor or the actual neb? Our

> > compressor is a ProNeb Ultra but the nebulizer that you will put

> the

> > Tobi in should be a Pari LC Plus. That is what is recommended by

> > Tobi. Of course there could easily be something new that I don't

> > know about. I was taught some good tips by folks on this list

> when

> > we were giving Tobi to Abby the first time:

> >

> > 1.) If it's a Pari and you're using a mask, remove the cap from

> the

> > neb or you'll be there all day. It seems like you're wasting

> > medicine but I guess they figure that in. It should take about

15-

> 18

> > minutes with the ProNeb Ultra compressor. If Zach won't be still

> and

> > you feel like you're totally wasting the drug you can do it while

> > he's asleep if you have too. They don't like it being done that

> way

> > because they supposedly don't breathe as deep when sleeping but

> you

> > have to make a judgement call. I know I got more in Abby that

way

> > than when she fought the whole time. We would always try it a

few

> > times while awake - mostly successfully - (a.m. she had to be

> > awake).

> >

> >

> > 2.) Let the compressor blow through the hose alone for several

> > minutes after each usage in order to make sure the condensation

> > inside it is dried up. When we know it's dry we usually wind it

> up

> > and store it in a Zip-Loc.

> >

> >

> > 3.) Use Control III disinfectant to sanitize the neb every other

> > day. Not vinegar. Wash it with warm soapy water after each

use.

> > Then SHAKE it until you think your wrist is breaking in order to

> get

> > all the droplets of water off and lie the parts out on several

> clean,

> > dry paper towels. We usually put one or two on top to keep any

> dust

> > off. After it dries COMPLETELY, put it together and store it in

a

> > sanitary container until next use. It seems like overkill but the

> > last thing you want to do is send aerosolized bacteria into

> Zach's

> > lungs. Main thing that should help you is to know that Pa " dies

> when

> > it dries " .

> >

> >

> >

> > Good luck to you.

> >

> > Joe (Dad to Kelsi,7; Chloe,2 1/2; and Abby 15mos. w/cf)

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The machine is called the Proneb Ultra, the neb cups are called Pari LC plus

nebulizers. Just a little confusion there. We do have the Ultra as our Proneb

Turbo died, and that is what they sent us. It works for Tobi but sometimes

has to take a little break inbetween treatments because the machine gets

too hot. Other than that it is fine.

love,

M

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Joe,

Where can I get Control III disinfectant?

Thanks,

Gale

> Sara,

>

> Sara,

>

> Are you referring to the compressor or the actual neb? Our

> compressor is a ProNeb Ultra but the nebulizer that you will put

the

> Tobi in should be a Pari LC Plus. That is what is recommended by

> Tobi. Of course there could easily be something new that I don't

> know about. I was taught some good tips by folks on this list when

> we were giving Tobi to Abby the first time:

>

> 1.) If it's a Pari and you're using a mask, remove the cap from the

> neb or you'll be there all day. It seems like you're wasting

> medicine but I guess they figure that in. It should take about 15-

18

> minutes with the ProNeb Ultra compressor. If Zach won't be still

and

> you feel like you're totally wasting the drug you can do it while

> he's asleep if you have too. They don't like it being done that

way

> because they supposedly don't breathe as deep when sleeping but you

> have to make a judgement call. I know I got more in Abby that way

> than when she fought the whole time. We would always try it a few

> times while awake - mostly successfully - (a.m. she had to be

> awake).

>

>

> 2.) Let the compressor blow through the hose alone for several

> minutes after each usage in order to make sure the condensation

> inside it is dried up. When we know it's dry we usually wind it up

> and store it in a Zip-Loc.

>

>

> 3.) Use Control III disinfectant to sanitize the neb every other

> day. Not vinegar. Wash it with warm soapy water after each use.

> Then SHAKE it until you think your wrist is breaking in order to

get

> all the droplets of water off and lie the parts out on several

clean,

> dry paper towels. We usually put one or two on top to keep any

dust

> off. After it dries COMPLETELY, put it together and store it in a

> sanitary container until next use. It seems like overkill but the

> last thing you want to do is send aerosolized bacteria into Zach's

> lungs. Main thing that should help you is to know that Pa " dies

when

> it dries " .

>

>

>

> Good luck to you.

>

> Joe (Dad to Kelsi,7; Chloe,2 1/2; and Abby 15mos. w/cf)

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many places carry it . We do . 1-.We are the CF Pharmacy,

Inc.in FLORIDA

LOVE & HUGS, GRMBEV

Re: Proneb Ultra and Tobi

Joe,

Where can I get Control III disinfectant?

Thanks,

Gale

> Sara,

>

> Sara,

>

> Are you referring to the compressor or the actual neb? Our

> compressor is a ProNeb Ultra but the nebulizer that you will put

the

> Tobi in should be a Pari LC Plus. That is what is recommended by

> Tobi. Of course there could easily be something new that I don't

> know about. I was taught some good tips by folks on this list when

> we were giving Tobi to Abby the first time:

>

> 1.) If it's a Pari and you're using a mask, remove the cap from the

> neb or you'll be there all day. It seems like you're wasting

> medicine but I guess they figure that in. It should take about 15-

18

> minutes with the ProNeb Ultra compressor. If Zach won't be still

and

> you feel like you're totally wasting the drug you can do it while

> he's asleep if you have too. They don't like it being done that

way

> because they supposedly don't breathe as deep when sleeping but you

> have to make a judgement call. I know I got more in Abby that way

> than when she fought the whole time. We would always try it a few

> times while awake - mostly successfully - (a.m. she had to be

> awake).

>

>

> 2.) Let the compressor blow through the hose alone for several

> minutes after each usage in order to make sure the condensation

> inside it is dried up. When we know it's dry we usually wind it up

> and store it in a Zip-Loc.

>

>

> 3.) Use Control III disinfectant to sanitize the neb every other

> day. Not vinegar. Wash it with warm soapy water after each use.

> Then SHAKE it until you think your wrist is breaking in order to

get

> all the droplets of water off and lie the parts out on several

clean,

> dry paper towels. We usually put one or two on top to keep any

dust

> off. After it dries COMPLETELY, put it together and store it in a

> sanitary container until next use. It seems like overkill but the

> last thing you want to do is send aerosolized bacteria into Zach's

> lungs. Main thing that should help you is to know that Pa " dies

when

> it dries " .

>

>

>

> Good luck to you.

>

> Joe (Dad to Kelsi,7; Chloe,2 1/2; and Abby 15mos. w/cf)

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

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Grandma Bev,

I was able to get a case of 50 Salter nebulizer kits for just $76

from your pharmacy. This means that they were only $1.50 each. At

this price we can afford to change them more often. Thanks!

Gale

> > Sara,

> >

> > Sara,

> >

> > Are you referring to the compressor or the actual neb? Our

> > compressor is a ProNeb Ultra but the nebulizer that you will put

> the

> > Tobi in should be a Pari LC Plus. That is what is recommended by

> > Tobi. Of course there could easily be something new that I don't

> > know about. I was taught some good tips by folks on this list

when

> > we were giving Tobi to Abby the first time:

> >

> > 1.) If it's a Pari and you're using a mask, remove the cap from

the

> > neb or you'll be there all day. It seems like you're wasting

> > medicine but I guess they figure that in. It should take about

15-

> 18

> > minutes with the ProNeb Ultra compressor. If Zach won't be still

> and

> > you feel like you're totally wasting the drug you can do it while

> > he's asleep if you have too. They don't like it being done that

> way

> > because they supposedly don't breathe as deep when sleeping but

you

> > have to make a judgement call. I know I got more in Abby that way

> > than when she fought the whole time. We would always try it a few

> > times while awake - mostly successfully - (a.m. she had to be

> > awake).

> >

> >

> > 2.) Let the compressor blow through the hose alone for several

> > minutes after each usage in order to make sure the condensation

> > inside it is dried up. When we know it's dry we usually wind it

up

> > and store it in a Zip-Loc.

> >

> >

> > 3.) Use Control III disinfectant to sanitize the neb every other

> > day. Not vinegar. Wash it with warm soapy water after each use.

> > Then SHAKE it until you think your wrist is breaking in order to

> get

> > all the droplets of water off and lie the parts out on several

> clean,

> > dry paper towels. We usually put one or two on top to keep any

> dust

> > off. After it dries COMPLETELY, put it together and store it in a

> > sanitary container until next use. It seems like overkill but the

> > last thing you want to do is send aerosolized bacteria into

Zach's

> > lungs. Main thing that should help you is to know that Pa " dies

> when

> > it dries " .

> >

> >

> >

> > Good luck to you.

> >

> > Joe (Dad to Kelsi,7; Chloe,2 1/2; and Abby 15mos. w/cf)

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

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