Danish CF Center protocols

[Guest guest]

Hi

I was wondering why the U.S does NOT use the Danish treatment methods for

CF.Their VERY VERY aggressive and none of their pediatric patients are colonized

with Pseudo before the age of 10 there. Also, the Average life expectance is

in the 50's.....why doesn't the US do what they do...a matter of fact they are

totally opposite. The Danish believe you should get a 2 week tune up after

Pseudomonas A colonization EVERY 4 months and followed at clinic monthly. The

U.S

is primarily against preventative Tune-Ups and our Stat's aren't as good.

In the Danish CF Centers they are checked for PA every month as babies and

kids and the second they culture it they go Guns-a-Blazing to get it erradicated

before it becomes colonized in the lungs. Thus their patients are healthier,

live longer, and most of their kiddos are not colonized with P.A. Plus their

quality of life is much better even though they do regular tune-ups b/c they

feel healthier and stronger and have less cough and secretions. Where as the U.S

does not believe in erradication of P.A? They believe once you have it its

there for good.

Seems reeal backwards to me.

Any advice...I believe this is also where that Pseudo vaccine is being tried

out....I read an article about it a few months back

Becki

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[Guest guest]

Becki,

They go by the Danish method in Iowa. We are there every month checking for

pseudomonas that is if we are not on medication. And if it is present we do

three months of med.'s and check every month to make sure it is gone. If it is

gone for three month we don't have to go back for three months. But that has not

happen much with us usually we are there every month. I am not sure what you

mean by a tune up but we have never been hospitalized for anything other then

sinus surgery and is usually not over night. Deb A

[Guest guest]

Becky, good question, I'd like to know why too. Maybe we should all email

the CFF and ask what the deal is. My daughter had PA culture at age 2 and

they bacically did nothing. She didn't get IV antibiotics until she had an

exacerbation at age 9. Before that all her exacerbations were treated with

lousy inhaled tobra or cipro. For only like 10-14 days. I'm sure alot of

damage was done back then, although she has been very lucky and is really

healthy still.

love,

M

mom of age 19 wcf and Nick age 21 nocf