Tobi tips please

[Shari]

Kate-
OK, I don't know what they gave you, but that's not what we use. Jacob gets inhaled "Toby" and it's in vials that you snap open and squirt into the neb. Sounds like you were given the wrong thing or they didn't have the correct med and substituted. Toby usually comes in a blue & white box and has great info for parents/patients inside. Yes, you do keep it in the fridge. Jacob gets one of the inhaled toby vials every 12 hours, which is an adult dose. The BEST way to give inhaled toby is to use a Pari nebulizer. It is specially made for toby and is designed to be reused and lasts for 6 months. It tells you how to clean it, the simplest way being in the dishwasher. I also LOVE the machine that we got when Jacob was put on toby. The old one took 45 min to give the med (it's really sticky and hard to break up into fine particles), but the new one takes 15 or less. MUCH better. You can't give toby in just any neb. Most don't break up the particles fine enough to be absorbed. Toby was tested on a pari neb, but a Hudson will also work (takes longer and is not designed to be cleaned and reused).

How old is your daughter? Cipro is not typically given to children. A few docs use it experimentally, but it definately says not to in the book. I have refused it give it to my child because there are no clinical trials on children with Cipro and in animal studies it cause damage. May want to do some research on your own.

Hope this helps!
-Shari

[Shari]

Kate-
We use the Pari neb. It has a fish mask that you can use on the face, but I just put an extension on Jacob's trach and held the neb onto the trach and it worked great. The machine that we use is the Pulmo-Aide by Devilebiss. Other Devilebiss machines are not as powerful and just don't work as well. The way that I came up with this machine was that I looked at the clinical trials for Toby when they tested it, and this machine with the Pari neb is what they used. The combination of this machine and the Pari neb made my life a LOT easier. I use to HATE to give toby until we changed to these products - so much simpler now.
-Shari

[ben's mom]

It's all been said, I think. But we keep a seperate neb kit labeled for Tobi use only, so we don't have to worry about contaminating the other kits.

Jenny

[Laurie]

We get the little vials with the closed lids and draw the tobi out with a syringe, sticking the needle through the rubber top. I can't recall our dosage, but it is something like 1-2mls of tobramyacin, which we then dilute in 3 mls of saline. Then we put it in the nebulizer (we also use a separate nebulizer for the tobramyacin) and put it inline with Evan's mist collar. It takes about 20 minutes to give one dose, and we usually do it 2x per day for 10-14 days for a Pseudomonas infection.

I don't know what your options are for medical care, but it sounds like it is time to find a new doctor - who knows about tobramyacin, etc. Is your doctor a pulmonary or ENT specialist? We have a lovely pediatrician, but he lets Evan's pulmonary doctor call the shots on meds for trach infections, etc. Until then, we will be here!

[cariaad]

Kate, have you talked to the pharmacist? I seem to remember reading somewhere that meds prepared for one method of delivery were vastly different in dosage etc from ones prepared for another method (IV vs inhalation). Im not sure I would go on until I had some more firm research...what does your pulmonologist say? Deb