Fairly new to site & questions about Tobi

Abby

New member
I'm a fairly new poster to the site but have been a lurker for some time. I haven't made a formal introduction yet so here it is. My name is Sherri, I have a beautiful 3 year old daughter, Abby with CF. She was diagnosed at 5 months, she has the Delta F508 gene and the other is 1898+1GA. I would be interested in knowing if anybody else has that combination and what kind of severity levels they have.

Abby's health has been good, with one hospitalization at 18 months and another this past January. She was in great shape after leaving the hospital, then came down with a cold 2 weeks afterward and has been battling a cough ever since. We are now trying Tobi along with Bactrim and Cipro. I was told she cultured staph and 3 strains of pseudomonas. If that doesn't work, it's back to the hospital.

How many others on on Tobi and how long does it take in your nebulizer and what kind of compressor do you have? I'm not sure if she's in need of a new compressor (it's 3 yrs old and has been dropped a few times) or if tobi is just that slow, but it's taking over 30 minutes. Just curious to see if there are faster machines out there.
 

anonymous

New member
It could be that you need to change the filter on your compressor.

When Ds first started tobi we had a pari proneb plus and pari neb cup and it took 35-40 minutes. Then couple months later a relative gave us their old devillbiss pulmoaid that their daughter used when she used to have asthma attacks, for use at my inlaws house. Treatment time dropped to 20-25 minutes. I went online and ordered a devilbiss compressor the next day. We use that one for our primary nebulizer and the pari for vacations. Was a real time saver. Liza
 

anonymous

New member
I have a 12 month baby that is taking Toby and for us it takes 20 minutes.
We use Pulmo-Aide DeVBISS compact compressor wich for us works very good.
Mom to Marcos (W/CF)
 

izemmom

New member
Sherri -

We use a Pari LC Plus neb and a Proneb Ultra compressor. Tobi takes us over 30 minutes, too. We were told to not try and rush it with a different compressor, cup, etc... because we really need saturation and it takes that long. (Not sure I really beleive that...) but we've been sticking it out, and REALLY enjoying the months off of TOBI!!!!

Tami
 

anonymous

New member
According to the product literature the only compressor that they recommend for Tobi is the Devilbiss. I wanted to get one of those pari treks, but the company said they don't recommend it. Liza
 

anonymous

New member
My 3 year old son w/CF is on the standard 28days on + 28 days off Tobi cycle. We have the Devilbiss Pulmoaide and use it with the PariLC neb cup and it's around 20 minutes. I also find that when it is humid the Tobi sometimes gets foamy and it takes longer. Other things to look for if it's running slow are kinks in the tubing or, with the PariLC if the air valve on top (the round blue thing in the lid) is stuck shut.

Our insurance company will pay for a new compressor every 2 years so we just order replacements regardless of how well it seems to be working.
 

celtsfan

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i> According to the
product literature the only compressor that they recommend for Tobi
is the Devilbiss. I wanted to get one of those pari treks, but the
company said they don't recommend it. Liza</end quote></div><br>
<br>
My personal feeling on this is that the Pari Trek is not
recommended because it was not used in the study, therefore it is
not approved. The pari trek is great for travelling, has car
adapter and battery. I have not had any issue with it and have used
it with Tobi, Pulmo, Hypertonic Saline, etc  It does take
longer then the Pulmoaide Devilbiss so its nice to have both if
possible.   For those who do not have the Pulmoaide
Devilbiss, I would bet you could fight insurance to get one because
it is the one that I know that is offically approved with Tobi, so
it seems if you are on Tobi insurance would need to cover this
equipment.<br>
<br>
Brian
 

anonymous

New member
Thanks for all your replies. I guess our machine isnt' too far off the mark. I think I will still ask for a new one at our next appointment.
 
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