Kidney damage from inhaled TOBI?

August 24, 2003

,

I had no idea that levels could become too high from inhaled Tobi. I didn't

think it was systemic. Has anyone else had this happen? Should blood

levels be monitored while on inhaled Tobi? Ben is using it for the first

time and no one has suggested checking his levels. Should we be doing this?

Marcia

mom of Ben (12 w-cf)

-----Original Message-----

From: ANDREA FITTING

HI ,

I am sorry you and have been having such a hard time. I added Val

Hudson's name to the subject line so she reads your e-mail, since I don't

know enough about GSH to tell you anything.

I have to ask why wasn't someone following 's levels? I realize

that the CF clinic is far away but a local hospital can draw blood with her

ped or MD's request and check the levels. When the doc gets the results

they just consult with the CF clinic for adjustment of the dose. This is

what we did when started on Tobi. We found out quickly that a full

vial of the inhaled Tobi was way too much for and the dose was cut in

half. We re checked her " peak and trough " levels and they were fine. I am

shocked that they didn't do this for , It is just so common sense.

And now she has kidney damage because someone didn't think about it.

I hope is feeling better very soon.

Mom of , 4 & 3/4 with CF

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