PA under age 2-JOE

[Guest guest]

Dylan cultured it at 6 months. The CF Center had him on Tobi and alternating

with Coly for the first 5 years! He is doing good. Now he does Tobi but not

Coly. I have heard that since most kids don't grow a PA til 10 its best to

be very agressive with young kids/babies - you don't want them develoing scar

tissue.

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

Rosemary,

Did Dylan culture it intermittently while he was on the

Tobi/Colistin? Are you talking about Colistin when you say Coly or

is another drug? Inhaled? Does he culture Pa now? I'd be willing

to go that route. Thanks.

Joe

> Dylan cultured it at 6 months. The CF Center had him on Tobi and

alternating

> with Coly for the first 5 years! He is doing good. Now he does

Tobi but not

> Coly. I have heard that since most kids don't grow a PA til 10 its

best to

> be very agressive with young kids/babies - you don't want them

develoing scar

> tissue.

>

>

> Rosemary in NY with 3 children (13, 11 and 7)

> with CF. I have a dog named TOBI and have

> coined the phrase " BREATHE DAMMIT "

>

>

>

[Guest guest]

I'ma little confused...which seems to be happening quite frequently

lately. Anyway, cultured PA the beginning of October. Her dr.

said he wanted to treat it aggressively, so she did TOBI for 28 days

along with Cipro. So what exactly does agressive mean? One would

think that IV treatment was more aggressive than inhaled treatments.

What about the people who have posted whose docs put them on TOBI

for three months. Thast seems pretty aggressive to me. Oh I worry

so much! I just want the PA to go away. He said that her cultures

grew " significant amounts of PA " , what the heck does that mean?

I sure hope you find some answers Joe because it seems like nobody

has any answers, they are just guessing.

e