Tay-Sachs' child on Colistin

E

Elisesmom

New member
Hi,

I know this is a message board for CF patients and families, but I thought maybe someone could help me out. My 2 1/2 year old daughter has Tay-Sachs disease. She has tested positive several times for pseudomonas and has been treated with Tobi on and off. We started on Colistin today. She's going to alternate month to month with Tobi and Colistin. We are using 150 mg of Colistin powder, mixing it with 4.5ml of sterile water, putting 2.25ml of that mixture into the nebulizer cup, then adding 2ml more of sterile water to the cup. It mixed well when I did it today, without much foaming. It did, however, foam up as soon as I turned the nebulizer on. Does anyone have any suggestions as to how to keep the foam down? I'm using Airlife brand misty max 10 nebulizer cups and an Inspiration Respironics nebulizer.

Thanks for your help,
Laurie
 
S

SeasonsOfLove

Guest
Laurie,

My daughter Colleen says the Colistin foams up less when we use the Sidestream nebulizer cup (which we got at our doctor's office)

Good luck,
 
J

julie

New member
I can't recommend anything specific, but from all the colistin questions on this board-a main problem with this med seems to be that it foams up.... just wanted to say "don't feel alone". I see that you noted you use sterile water, our "mixture" is a bit different and we have minimal foaming (still some but not too bad)

We use 3ml (cc's same thing) of Normal Saline .9% INTO the powder bottle of colistin-gently aggitate
Then we use 2.5ml of that solution and put it in the neb. cup
then we add 2ml of Sterile water

Repeat in the evening.... maybe give that a try?????
 
J

JazzysMom

New member
Another suggestion is to keep the mixture refridgerated before use. I premix a days worth & store it in the fridge. It will still foam, but not as bad when cool.
 
A

anonymous

New member
The DeVilbiss Micro Mist disposable nebulizer cups w/ the T mouthpiece work pretty well too to reduce foaming. I replace these every 2 weeks.
 
N

nobody

New member
If you can get hold of a nebulizer by Pari - called Pari LC Star - this has been designed for just that reason.

The Sidestream neb's are a 4 jet neb (4 holes) - and so being will produce much more foam.
Hasn't the Sidestream been recalled? (thats what I was told @ clinic a while back) - something about too fast . . .?
-steve
 
A

anonymous

New member
Sidestream recalled? Can't find anything on this. They just gave it to me a month ago. It doesn't "feel" as effective, but what do I know? Anyone have more info?
 
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