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Re: TOBI trial

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on 30/10/02 2:47 AM, O'Neill at smoneill@... wrote:

> hi guys

> Living in New Zealand we are a bit behind you all out there and we have been

> asked to be in a TOBI trial with Liam, hes only 8 weeks old? Go figure that.

Sounds somewhat bizarre to me - I thought it was not recommended (by the

manufacturer) for infants.

> We were told to put him on antibiotics preventaive straigh away and we havent

> because we wont to use them when it is nessesary.

> What do you think about doing this, is it good to go on this mediciation so

> early, we dont really know what to do now? I mean hes not sick, got no lung

> troubles yet.

We discussed this ad infinitum with the CF doctors, and ended up going with

the antibiotic (it was an anti-staph one, maybe keflex?) for Sian's first 12

months. The background to the decision went something along the lines of -

if we can avoid a hospitalisation in the first year due to a staph

infection, then this is a good thing.

Mum to Cate 10yrs wocf but deeply adolescent (and in size 8 women's shoes,

which is the same size as me!) and Sian 6yrs wcf, asthma, GERD and ADD?

Canberra Australia

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