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Thread: Best nebulizer recommended for Tobi and Pulmozyme

  1. #1

    Best nebulizer recommended for Tobi and Pulmozyme

    My daughter who is almost 5 just recently started doing Pulmozyme and will start Tobi in a few days. Up until now we were doing her nebs using a device that is not specifically recommended for CF meds. I want to look for something online (I live in the middle east and we don't have these types of nebs available locally) that would be the best for use with these medications but I have no idea where to start. Can you guys recommend something for me? I want a device that is known for its best delivery of these medications and if it's light-weight and can operate on batteries as well as a power cord then this would be a plus.
    Also do these devices usually come with extra cups or can we buy extras along with the device?

    TIA
    Hana, mother to girl born in 2010 with CF (2183AA- >G and 3041-15T->G) and boy born in 2013, CF free.

  2. #2
    Super Moderator
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    Mom,


    Im so sorry for the struggle to get the right equipment. A small nebulizer that is portable typically wont hold up to the long-term use that you need for CF. We had this one for 3 years and had to replace every couple months (under warranty, but still a pain and it might be hard to get it shipped there that frequently). https://www.medicalmega.com/medical/devilbiss/DV3655D.html

    We then started using the Pari which I think worked better, but still wore out after about 3-4 months. http://justnebulizers.com/pari-vios-nebulizer.html

    We finally got a psi compressor that works so much better and faster and at the appropriate level you need for CF. I just asked for recommendations when we were replacing (DS broke the gauge), and again folks recommended it. And it does work great.

    http://www.vitalitymedical.com/invacare-50-psi-compressor.html

    Id suggest you get the 50 psi for day-in-day out and a smaller unit (Pari) for if you have to travel. For extra parts, allegromedical has the best price, but you can get at the other sources too.

    http://www.allegromedical.com/respir...t-p548030.html


    Good luck mom!

  3. #3
    Junior Member
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    Dec 2014
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    thank you for this info Aboveallislove, and for the question MyBabyCeline. I had initially had the pari "green" compressor that we got from the hospital. After about 6 mos. we ordered the Parti pro which is supposed to put out 46 psi. I notice some difference as it being "faster". I'm really interested in getting the compressor you recommended from vitalitymedica as I need to use it for my son regularly 2x day, and often 4x a day.
    Mom of 2 ~~ John born 10-3-10, non-cf'er & Everett born 10-6-14, mutations F508del and 1717-1G->A

  4. #4
    Thank you so much Aboveallislove for the helpful information and links! I am a little bit confused though as I thought the whole device comes containing all the parts (compressor + nebulizer) or at least this is the case with the devices that I bought over here. I always thought I missed something when I read posts talking about the nebs used for CF patients in this forum. People talk about the pari and then say they use it with a certain compressor which I never understood. Please excuse my lack of knowledge regarding this because as I mentioned nothing specified for CF is available where I live so it's a completely new thing for me. So I guess my question is, do I have to be looking for a certain compressor that gives the right amount of pressure (like the one you recommended) and then look for a suitable nebulizer like the Pari? Or do I have it completely wrong?!

    Thank you so much again!
    Hana, mother to girl born in 2010 with CF (2183AA- >G and 3041-15T->G) and boy born in 2013, CF free.

  5. #5
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    We've never used Tobi, so I don't know the answer to that, but I believe that the Pari LC plus nebulizer CUP, is what you need for Tobi. Re the compressor, I don't think the CF Centers here tell you to get a specific nebulizer COMPRESSOR (compresses air to push it out), but my understanding is the drugs should be delivered at a certain pressure and in fact just told my husband that's why I wanted to get the 50 psi one replaced now in case we needed so we could have the pressure at the right level.
    When you get the "initial" equipment from the hospital or pharmacy it typically comes with both the compressor and the cup, but the replacement ones (ie ones sent when one broke) don't; and when you purchase you purchase usually only the compressor or only the cup...
    Please do let me know if this doesn't make sense.

    Quote Originally Posted by MyBabyCeline View Post
    Thank you so much Aboveallislove for the helpful information and links! I am a little bit confused though as I thought the whole device comes containing all the parts (compressor + nebulizer) or at least this is the case with the devices that I bought over here. I always thought I missed something when I read posts talking about the nebs used for CF patients in this forum. People talk about the pari and then say they use it with a certain compressor which I never understood. Please excuse my lack of knowledge regarding this because as I mentioned nothing specified for CF is available where I live so it's a completely new thing for me. So I guess my question is, do I have to be looking for a certain compressor that gives the right amount of pressure (like the one you recommended) and then look for a suitable nebulizer like the Pari? Or do I have it completely wrong?!

    Thank you so much again!

  6. #6
    Quote Originally Posted by Aboveallislove View Post
    We've never used Tobi, so I don't know the answer to that, but I believe that the Pari LC plus nebulizer CUP, is what you need for Tobi. Re the compressor, I don't think the CF Centers here tell you to get a specific nebulizer COMPRESSOR (compresses air to push it out), but my understanding is the drugs should be delivered at a certain pressure and in fact just told my husband that's why I wanted to get the 50 psi one replaced now in case we needed so we could have the pressure at the right level.
    When you get the "initial" equipment from the hospital or pharmacy it typically comes with both the compressor and the cup, but the replacement ones (ie ones sent when one broke) don't; and when you purchase you purchase usually only the compressor or only the cup...
    Please do let me know if this doesn't make sense.
    This actually is the first time I make sense of the whole nebulizer thing, so thanks a lot for everything!
    Hana, mother to girl born in 2010 with CF (2183AA- >G and 3041-15T->G) and boy born in 2013, CF free.

  7. #7
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    We've always used reusable pari LC neb cups for pulmozyme, tobi, as well as every day albuterol and atrovent. When traveling, we've used disposable Sidestream nebulizers for pulmozyme and albuterol/atrovent, but don't think they're suggested for Tobi. Pari makes a disposable pari LC; however, IMO they're rather spendy, plus a LOT of the med is wasted as it doesn't have a lid.

    Our compressors for travel are pari vios (Previously a proneb ultra II) and we have a Philips respironics. Our every day machine is a 50 psi Invacare. We've previously used devilbiss. Originally we had issues with the pari proneb ultra as tobi took 45-50 minutes instead of the normal 20-22 and albuterol/atrovent took about 25-30 minutes instead of 15. It is not suggested to use the pari trek (portable with a battery option) as the psi isn't strong enough.
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  8. #8
    Quote Originally Posted by Ratatosk View Post
    We've always used reusable pari LC neb cups for pulmozyme, tobi, as well as every day albuterol and atrovent. When traveling, we've used disposable Sidestream nebulizers for pulmozyme and albuterol/atrovent, but don't think they're suggested for Tobi. Pari makes a disposable pari LC; however, IMO they're rather spendy, plus a LOT of the med is wasted as it doesn't have a lid.

    Our compressors for travel are pari vios (Previously a proneb ultra II) and we have a Philips respironics. Our every day machine is a 50 psi Invacare. We've previously used devilbiss. Originally we had issues with the pari proneb ultra as tobi took 45-50 minutes instead of the normal 20-22 and albuterol/atrovent took about 25-30 minutes instead of 15. It is not suggested to use the pari trek (portable with a battery option) as the psi isn't strong enough.
    Thank you Ratatosk! It's always very helpful to hear other people's experiences. I think I will get the Pari LC cups online and settle with the compressor I have for now. I might be coming to the US in December for a follow up for my daughter at Texas Children's Hospital. I will be looking into better compressors to bring with me then, and maybe get another portable device for when we're travelling.
    Hana, mother to girl born in 2010 with CF (2183AA- >G and 3041-15T->G) and boy born in 2013, CF free.

  9. #9
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    I have been using Devilbiss Pulmo Aide Compressor/Nebulizer along with the Pari LC nebulizer for many years and have been very pleased. The nebulizer is a real work horse with no problems. The nebulizer cost about $90.00 but will last for years. Suggest that you order filters for nebulizer at the same time if avaliable. This will save you on shipping. I replace the filer every few months fyi.
    I am 69yrs. old delta F508, one of four siblings, diagnosed at age 12, three of us had CF. Bother passed away with CF when he was 24, some 30 yrs. ago. I worked 35 yrs. in Nuclear Medicine, retired in 2004 at age 57 to to take better care of my CF. Have been married to my bride 49 yrs.. Great woman to have put up with me this long. We adopted two children, 3 days old when adopted, now 40yrs. old with total of 5 grandchildren. My lung function is FEV1 of 25% FVC 90%.

  10. #10
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    Quote Originally Posted by scanboyd View Post
    I have been using Devilbiss Pulmo Aide Compressor/Nebulizer along with the Pari LC nebulizer for many years and have been very pleased. The nebulizer is a real work horse with no problems. The nebulizer cost about $90.00 but will last for years. Suggest that you order filters for nebulizer at the same time if avaliable. This will save you on shipping. I replace the filer every few months fyi.
    We have a Devilbiss Pulmo Aide that we use as a spare at my inlaws house that is fairly old (1992-93) that we got from a cousin. Still works like a dream. Before getting the 50psi compressor we used Devilbiss Pulmoaide compressors for our everyday machine. Only issue was with their warranty policies -- had to have a DME (durable medical equipment) provider send in the machine for you rather than doing it yourself. Our DME service is less than stellar and it was just too stressful.
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

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