Re: Hello/Tobi

[Guest guest]

Tracey,

Hi sorry somehow I missed this e-mail. We just had them do a " peak and trough "

like they would if she was in the hospital on IV tobramycin. they look for

levels in the blood of the med. I am not sure exactly what number constitutes

" high " or " acceptable " but if it is too high it can cause hearing

problems/deafness and kidney damage. Please request this if you haven't

already.

Mom of , 5 with CF

Hello

Hi!

I'm going to give this another try, I'm not sure it worked the first time

around. Anyways, my daughter, Sydney, is going to be three in March, and she

was diagnosed with CF in May of this year. My husband was actually deployed

during the war when I found out, so I was sort of handling it myself with help

from my family until he came home. Anyways, I have a bunch of questions

concerning CF, but I'll start out small. We had an appointment yesterday at

the CF Clinic, and found out that Sydney tested positive for psudanomas

(non-mucoid). We started her on TOBI today, and I'm concerned about her taking

it at such a young age. Has anyone else out there had to use this on their

toddlers? If so, did you see an improvement? For the most part my husband and

I are trying to be very positive about everything, but sometimes its hard. I

want her to live a normal life, but I already find myself sheltering her from a

lot. We recently moved to Virginia, and I haven't returned to work yet for fear

she'll be exposed to way too many viruses at a daycare center. It seems like

we're starting to spiral out of control with our emotions, any advice on how to

get a grip on reality without letting it bring you down? It feels like we're

the only family going through this. I'm hoping somebody has some words of

encouragement out there! Thanks in advance for any advice you may have for us.

Tracey