(No subject)

[Guest guest]

>

> We didn't get rid of it. We tried it for over six months I believe

> and decided to call it a day and consider him colonized. So now we

do

> 28 days on of TOBI and 28 off. My doc believes he went undiagnosed

> for at least a year and a half when I told him of my battles w/

> Wyatt's cough while in California. His doc here in Hawaii diagnosed

> him immediately when we got here. Maybe 2-3 weeks after arriving. So

> don't give up hope yet, you still have a chance. I don't think we

> ever did but what can you do? Christy mom of Wyatt 7wcf and Hunter

> 2.5wocf

>

>

> What does is it mean to consider someone colonized?

> age 5 and a half has been culturing PA since December

of '01. The

> first time she was admitted for IV treatments. Since then she has

been

> positive two more times. The Doctors have her on the four weeks on

Toby

> Four weeks off cycle. With an added Cipro for 14 days. But she

still

> continues to culture positive and currently has bronchitis. She

finished

> her cycle of Tobi two weeks ago. However the problem:

> Last Thursday she was diagnosised with bronchitis and is again on

Toby

> for two more weeks. Monday the 18th she is scheduled for surgery

to have

> her feeding tube placed. If her lungs have not gotten any better

the

> operation will be postponed.

> My question is - With P.A. and the on and off treatment using Toby

and

> still culturing positive. In your experiences, would you think a

treatment

> of IV antibiotics would work better at this point. I don't think

she has

> been " clean " since last December when she actually did have P.A.

and was on

> tobrimyocin(sp.) IV? Thanks

>

>

> Steve & Louise

> Grandparents to Princess 5 and a half years WCF

> and Her footman, Stevie 3 years WOCF

Hi my name is Kim and I also have a son named Wyatt who has CF. He

is only 2 and was diagnosed at 6 mnths old. We have been using Tobra

inhaled in his mask with ventolin on a mnth on mnth off basis for a

year now. Last year he was hospitalized with lung infections 25

times. Since on the tobra he has been clean. So I have to agree

with you in questioning why yours has not been treated with it either

on IV or inhaled. I know that our methods in Canada are different

but I do know that the tobra we use inhaled is the one in IV form.

May be that would work for you also.? I hope that helps in some

way. It is also nice to see the name Wyatt used again. I haven't

seen it yet elsware. Good Luck

Kim Dinsmore mom of Kiefer 3.5 yrs ncf and Wyatt 2 wcf