classification of cf patients?

[Guest guest]

We're in the UK - this may be a British phenomenon....??

Margaret

classification of cf patients?

I am not aware of any classification of cf patients at our clinic. Is

this

standard in the US?

mom of Henry 19.5 months wcf

> 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!!

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

[Guest guest]

I am not aware of any classification of cf patients at our clinic. Is this

standard in the US?

mom of Henry 19.5 months wcf

> 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!!

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>