Advice about Fast Nebulizers

J

JustaCFmom

New member
Hi!
I am a mom to 2 newly diagnosed kids (ages 15 & 8) with CF (W1282X/<span>3849+10kbC>T).
<span> I am trying to decide which nebulizing system to buy and I am feeling quite overwhelmed by everything. <img title="Surprised" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-surprised.gif" alt="Surprised" border="0" />We have the Pari Turbo Boy and each treatment takes 30 minutes - that means one hour twice a day for my 8 year old who is getting hypertonic saline and Tobi at the moment! We are looking for something to improve out quality of life over here!
<span>Our doctor recommended the Pari eflow because
<span>this is what he has experience with. He didn't rule out the Aeroneb go and I didn't ask about other options. The eflow is very expensive, but we are willing to buy it if it is the best quality, etc.
<span>Any information, feedback, details, etc. would be GREATLY appreciated.
<span>Thanks so much! This is an AWSOME forum!<img title="Laughing" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-laughing.gif" alt="Laughing" border="0" />
 
R

Ratatosk

Administrator
Staff member
How old is your Pari? We've gone thru a few and when treatment times increase, it usually means it's starting to fail. When DS was a baby we had a faulty pari proneb ultra and being new parents, didn't know any better. Albuterol/atrovent nebs took 25 minutes and tobi took 45-50. It should take about half the time.

there are some nebulizers, like the pari trek that doesn't have enough psi for use with tobi or pulmozyme. I have heard from others that the eflow would help cut treatment times significantly. Currently because DS vests for 30 minutes, he has to sit there anyway, so 10-15 minutes of albuterol and then again for pulmozyme really isn't an issue for us. Tobi does tack on extra time during those months, but he's usually playing video games, ipad or watching tv to keep him occupied.
 
J

JustaCFmom

New member
Thanks so much for your feedback! One machine is from November and the other is just 2 months old. I think I am also unsure how much left over liquid is normal at the end of a treatment.
 
M

Mommafirst

Guest
We purchased a more expensive Mobilaire by Invacare for this very reason. It has variable psi's so you can adapt to the neb you use and med that's in it for optimal treatment times and in the right droplet size for the med. We've had ours for 4 years and its still working great. I highly recommend this!!!
 
E

edan

Guest
We also purchased the Mobilaire just a month ago or so. It was about $280 or so if I remember correctly. They are listed for up to $450, so don't overpay. It really does take down the treatment time AND it is supposed to deliver the medicine in smaller particle size which gets deeper into the lungs. By the way, my daughter also had the 3849 mutation (see signature below). I hope your children are doing well now that they've been diagnosed properly.
 
E

edan

Guest
We also purchased the Mobilaire just a month ago or so. It was about $280 or so if I remember correctly. They are listed for up to $450, so don't overpay. It really does take down the treatment time AND it is supposed to deliver the medicine in smaller particle size which gets deeper into the lungs. By the way, my daughter also had the 3849 mutation (see signature below). I hope your children are doing well now that they've been diagnosed properly.
 
E

edan

Guest
Oh, I just reread your post. There is a doctor/cf researcher here in San Diego. He is 65 or so WITH CF. He has told me multiple times to get my hands on the eflow because it delivers meds the best of anything he has tried. If you can get it, then I would do it. I really trust this guy....and, of course, he IS 65 with CF.
 
E

edan

Guest
Oh, I just reread your post. There is a doctor/cf researcher here in San Diego. He is 65 or so WITH CF. He has told me multiple times to get my hands on the eflow because it delivers meds the best of anything he has tried. If you can get it, then I would do it. I really trust this guy....and, of course, he IS 65 with CF.
 
A

Anomie

New member
What medications can be nebbed with the mobilaire and how do you manage multiple medications with only one nebulizer? More info please?
 
A

Anomie

New member
What medications can be nebbed with the mobilaire and how do you manage multiple medications with only one nebulizer? More info please?
 
T

Tisha

New member
I've used many systems over the years, and they generally are noisy, rather bulky and heavy (I've always traveled a lot) and slow.

Since 2007 I am using the Pari eFlow (with saline, with pulmozyme, with Tobi and with Colistin) and I wouldn't change it for anything! Every treatment lasts about 5 minutes or less. The device weighs half a pound. It's completely noiseless (no concerns in bothering the rest of the family or using it while watching a movie). It's totally portable and comes even with a plug to use in the car. (what more can you ask for??)

I've heard things against using Tobi and the eFlow but here in Spain it's totally generalized and works fine!

Due to the improvement in quality of life, I wouldn't recommend any other! So (quite passionately) my advice goes exclusively in this direction.
 
T

Tisha

New member
I've used many systems over the years, and they generally are noisy, rather bulky and heavy (I've always traveled a lot) and slow.

Since 2007 I am using the Pari eFlow (with saline, with pulmozyme, with Tobi and with Colistin) and I wouldn't change it for anything! Every treatment lasts about 5 minutes or less. The device weighs half a pound. It's completely noiseless (no concerns in bothering the rest of the family or using it while watching a movie). It's totally portable and comes even with a plug to use in the car. (what more can you ask for??)

I've heard things against using Tobi and the eFlow but here in Spain it's totally generalized and works fine!

Due to the improvement in quality of life, I wouldn't recommend any other! So (quite passionately) my advice goes exclusively in this direction.
 
K

kosdancer

Member
I would HIGHLY recommend the E-flow. I had the Pari brands for years, I think I had 4 ultras and then some that don't exist anymore before that. I wouldn't recommend them simply because we found them unreliable. I had two die without warning within a year. 30 minutes is pretty normal for a Pari Ultra for TOBI and HTS. The e-flow is actually a different technology and uses electricity to force the liquid through laser-drilled holes instead of air to create mist. My HTS takes 10 minutes, pulmozyme is about 7, Cayston is 5, Colistin is 12ish, TOBI was about 12 when I was on it. The machine is pretty reliable, I have only had one problem in over two years.
Ratatosk, are you doing Pulmozyme and Albuterol during the vest?
 
K

kosdancer

Member
I would HIGHLY recommend the E-flow. I had the Pari brands for years, I think I had 4 ultras and then some that don't exist anymore before that. I wouldn't recommend them simply because we found them unreliable. I had two die without warning within a year. 30 minutes is pretty normal for a Pari Ultra for TOBI and HTS. The e-flow is actually a different technology and uses electricity to force the liquid through laser-drilled holes instead of air to create mist. My HTS takes 10 minutes, pulmozyme is about 7, Cayston is 5, Colistin is 12ish, TOBI was about 12 when I was on it. The machine is pretty reliable, I have only had one problem in over two years.
Ratatosk, are you doing Pulmozyme and Albuterol during the vest?
 
A

AleksandraKaczynska

New member
Hi - my daughter has the same second muataion and first also class I with a stop in it (the X at the end) We use Pari LC Sprint and Pari Boy is recommended as a second stationary nebulizer- not fast at all but good and now we decided to buy aeronebgo - to make inahaltions fast and easy and posiible in school which Asia is startint september. Asia was dignosed through screening and so far she is doing very well.
Aeronebgo is much cheeper and as good also. The difference is that you put the hts or other madicine into the nebulizer - and one nebulizer last for about 1200 inhaltions - that is about 3 per day per year. After that it needs changing. After two ytears you should also change the piece you link the mouthpiece to. Also it should be washed strait after inhalation so nothing dries up and blocks the membrane and use a steam sterilizer. If it cann't be washed at hand - for ex. while driving a car - put some 0,9% saline in it and let run so it "washes itself". Aeroneb can be used with all the same medicines as eflow.
I'm not sure where you are from so I can't compare prices with you.
 
A

AleksandraKaczynska

New member
Hi - my daughter has the same second muataion and first also class I with a stop in it (the X at the end) We use Pari LC Sprint and Pari Boy is recommended as a second stationary nebulizer- not fast at all but good and now we decided to buy aeronebgo - to make inahaltions fast and easy and posiible in school which Asia is startint september. Asia was dignosed through screening and so far she is doing very well.
Aeronebgo is much cheeper and as good also. The difference is that you put the hts or other madicine into the nebulizer - and one nebulizer last for about 1200 inhaltions - that is about 3 per day per year. After that it needs changing. After two ytears you should also change the piece you link the mouthpiece to. Also it should be washed strait after inhalation so nothing dries up and blocks the membrane and use a steam sterilizer. If it cann't be washed at hand - for ex. while driving a car - put some 0,9% saline in it and let run so it "washes itself". Aeroneb can be used with all the same medicines as eflow.
I'm not sure where you are from so I can't compare prices with you.
 
A

athanasia

New member
I use the Pari Eflow as well and would recommend it to anyone. I have had a transplant so I only use it for albuterol and Tobi (which is specially mixed by the pharmacy so the dose is correct, using regular name-brand tobi isn't formulated for delivery through the eflow). Combined, both of my meds are done in 5 min. It actually takes me longer to wash the neb after than to do the meds! Total time for everything is 15 min tops. I know it is expensive to buy but I go through foundation care (I know there is another pharmacy that does this as well but don't remember the name). They will loan you the machine (for free) as long as you get the medication from them (which my tobi needs to be specially mixed anyway, this is no problem). The albuterol I can use the normal vials that I can get at my local pharmacy. My insurance (which is currently medicare/medicaid) covers the medication so every other month, they send me the specially mixed tobi along with a new replacement head every 6 months. It is quite nice. I know many of these medications everyone listed on this thread can also be used in the eflow with much less time. And as was stated before, it is so portable and can take batteries or be plugged in to the wall or car. It is simply a must for any cystic on the go or with little patience to sit for so long. Just my two cents. Hope it helps<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

athanasia

New member
I use the Pari Eflow as well and would recommend it to anyone. I have had a transplant so I only use it for albuterol and Tobi (which is specially mixed by the pharmacy so the dose is correct, using regular name-brand tobi isn't formulated for delivery through the eflow). Combined, both of my meds are done in 5 min. It actually takes me longer to wash the neb after than to do the meds! Total time for everything is 15 min tops. I know it is expensive to buy but I go through foundation care (I know there is another pharmacy that does this as well but don't remember the name). They will loan you the machine (for free) as long as you get the medication from them (which my tobi needs to be specially mixed anyway, this is no problem). The albuterol I can use the normal vials that I can get at my local pharmacy. My insurance (which is currently medicare/medicaid) covers the medication so every other month, they send me the specially mixed tobi along with a new replacement head every 6 months. It is quite nice. I know many of these medications everyone listed on this thread can also be used in the eflow with much less time. And as was stated before, it is so portable and can take batteries or be plugged in to the wall or car. It is simply a must for any cystic on the go or with little patience to sit for so long. Just my two cents. Hope it helps<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

AleksandraKaczynska

New member
I made a mistake - for sterilization I use steam sterilizer - any other is ok also but if you want to boil make sure it does not tuch the bottom of the pan - put a bowl into the pan with water or some material at the bottom. If the nebulizer gets the 300 celsuis it may melt. But i use steam - its fast and economic for us. I do the sterilization just before ex. breakfast. let dry while still warm - very fast - and do the nebs..
It much cheeper the e-flow here and we get good servicing here - however I have not heard of it mallfunctioning but for the par when a father forgot to take the nebulizator out of boiling and it just melted.
 
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