Re: Re: Culture's are back/........

November 22, 2003

Joe,

I truly believe that the CF docs don't think of this. The side effects of Tobi

are the same as those of IV Tobramycin. The most worrisome are hearing problems

(including complete deafness) and kidney damage. If the CF docs won't do a peak

and trough, insist that the ped does it. it is a pain to get the kids stuck for

the peak and trough levels but, it is better than having them go deaf or worse.

They have enough problems already.

Our CF doc and ped worked together on this since it was a lot easier for us to

go to the ped for the actual draw. The CF doc contacted the ped, told her what

he wanted and We picked up the slip for the blood work and had it done. When

the results came back the ped sent them to the CF doc and he called told us to

cut the dose in half. We then did another peak and trough level and it came

back fine.

If it was me I would tell them that I am concerned about it and have them do the

tests.

Even if they tell you it is not necessary, insist. After all, We are the ones

in charge of our children's care.

Some little kids may not have high levels, but I am sure glad we did the test,

since she has been on it for over three years! She could have kidney damage or

be deaf by now, if we hadn't.

Culture's are back........

>

> Hi all! Well, Piper went to clinic on Monday for her regular

checkup, and since she has cultured Staph twice since July, they

repeated her throat swab. We got a call from the CF Specialty Nurse

today to let us know that Piper had cultured Staph again along with

Pseudomonas. It was kind of a low blow for us, we knew that

eventually she would culture it, but we had hoped that it would be a

while before she did. Anyway, her doc is putting her on Tobi and

Cipro in addition to her other meds (albuterol, Vitamax, Zyrtec,

Zantac, Prevacid, Reglan, and her enzymes).

>

> I just needed to get this out, our families don't understand the

significance of her culturing this, but oh well, I guess ignorance is

bliss........

>

> Katy

> Mom to Austin 4 no CF & Piper 16 months w/CF

>

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