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We got a leetr today from our Dr at the CF clinic informing us that 's

pseudomanas status is now CC = chronically cultured as opposed to CI=

intermittent. This means that will attend clinic with children with

pseudomanas and will be in the open ward when in hospital (for a few days

every 2 months at the start of IV sessions).

I am really concerned that this will adversely affect his health and I feel

that he hasn't had a fair chance at shifting the pseudomonas as he has only

recently started zithro (cos the Drs dragged their heels for 6 months re a

decision about zithro) and they have v. recently increased his colimycin

dose to four times what it was previously which makes me wonder if it has

been doing any good until now. And they misdx'd for 3.5 yrs in the first

place!! But they have a rule that if cough swabs show PA for a year then he

changes category.

I wondered what your thoughts are about the possible risks - how do your

clinics classify patients - what impact does this have on their treatment?

Thanks

Margaret - Mum of 4yo wcf - and no canula as have just finished IV

course - thank goodness, he can have a bath now!!

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