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Ricky's CF doc mentioned a trial of Tobi where it would be one quick dose

that they inhale like an inhaler. There is a trial coming up and she wants

us to participate in this, particularly because we find the time constraints

of 20 minutes of Tobi to be wearing. Has anyone heard of this?

Becky (mom of Ricky 7 with CF and Andy 5 no CF)

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I haven't heard of it but I would love to try it. that wait for Tobi to be

finished is like pulling teeth with .

Tobi trials

Ricky's CF doc mentioned a trial of Tobi where it would be one quick dose

that they inhale like an inhaler. There is a trial coming up and she wants

us to participate in this, particularly because we find the time constraints

of 20 minutes of Tobi to be wearing. Has anyone heard of this?

Becky (mom of Ricky 7 with CF and Andy 5 no CF)

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I hear you. Ricky acts like he is being tortured. " Not the yucky one!

That one takes too long! " blah blah blah. I try to explain to him that it's

only for four weeks but he has little concept of time. Then the four weeks

without Tobi go by and it's like no time has passed and we're back to it

again!

As I understand it, the trial involves a sort of injector pen that the child

inhales the medication out of. Sort of like the Advair inhaler has its

medication, this would be a powdered form of Tobi. For the trial he would

just get one dose, and then blood levels would be taken every hour all day.

This sounds awful too, but if we can help get this form of the medication

approved by the FDA I think I would do it.

Becky mom of Ricky (7) with CF and Andy (5) no CF and starting kindergarten

on Monday!

Re: Tobi trials

I haven't heard of it but I would love to try it. that wait for Tobi to be

finished is like pulling teeth with .

Tobi trials

Ricky's CF doc mentioned a trial of Tobi where it would be one quick dose

that they inhale like an inhaler. There is a trial coming up and she

wants

us to participate in this, particularly because we find the time

constraints

of 20 minutes of Tobi to be wearing. Has anyone heard of this?

Becky (mom of Ricky 7 with CF and Andy 5 no CF)

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