Re: re. to Tamiko, and CF bugs

[Guest guest]

,

Thanks for the info on the bugs:)

-mom of 4 and emotionally exhausted

----------

>

> To: cfparentsonelist

> Subject: re. to Tamiko, and CF " bugs "

> Date: Saturday, November 20, 1999 12:49 PM

>

>

>

> Tamiko,

>

> Wow, I really, REALLY hope Eli doesn't have CF on top of everything else.

> Best of luck with the screening. I think it's GREAT that his docs are

> starting him on TOBI. It really is the " wonder drug " (or the best

they've

> got at this point) for treating pseudo, from what I've read/heard (Meagan

> hasn't had pseudo herself yet). From what I understand, you can't tell

from

> X-rays if the pseudo is down in the lungs or not. That's why they do

things

> like sputum cultures and bronch to see what bugs are down there. Our

pulm.

> told us that with CF, a positive culture for pseudo always means it's

down

> in the lungs (this isn't true with some of the other bugs, which can turn

up

> on a sputum culture if they're just haning out in the throat and haven't

> invaded the lungs). Anyway, even thouth Eli does't have CF (that you

know

> of at this point), if he's culturing for pseudo, and has thick mucus in

his

> lungs, I'm betting the pseudo's down there too. Pseudo can be in the

lungs

> for some time before it causes enough damage to show up on chest X-rays.

>

> I think it's great they're having you treat Eli's pulmonary symptoms and

> have added in chest percussions. Most of us with children who have CF do

at

> least 20 minutes of chest PT twice a day, even when they're healthy, to

help

> shake the mucus loose so it can be cleared. Where Eli's lungs are

currently

> so full of mucus and he can't clear it well by himself, it might be worth

> asking Eli's doctor if perhaps you should increase his chest phisical

> therapy to twice a day. Just a thought. It sounds like he needs all the

> help he can get right now getting the mucus up.

>

> You asked what aspergillus is. It's a common mold (grows on

trees/leaves,

> in heating ducts, etc.), and like other cf " bugs " it can colonize the

lungs

> and sinuses. The problem with aspergillus is that many people with CF

are

> allergic to it, so once it's colonized then the person is also has

chronic

> allergic reactions to it; also, aspsergillus is tough to get rid of.

>

> On this list, you'll hear us talk about the various " bugs " frequently.

Staph

> Aureus and Hemophilus influenza are the two bacteria which tend to show

up

> first in people with CF, and they're not considered as problematic or

> serious as some of the others (so far Meagan's just cultured Staph A.,

and

> only once). Pseudo is the common CF bug which on the whole does the most

> harm, but TOBI is making it less threatening than it used to be. Then

there

> are all sorts of " exotic " bugs like S. Maltophilia which the researchers

> don't really know as much about yet, and can't decide if/how to treat.

The

> worst bug of all for people with CF is B. Cepacia, and it usually doesn't

> show up in young children. There are 5 strains of Cepacia, and at least

one

> of them goes away after a while, but the most severe of them can kill in

as

> little as three months. B. Cepacia is usually very resistant to

> antibiotics, thus its nasty reputation. The other bug you'll hear

mentioned

> on the list which has a nasty reputation is MRSA (methacillian resistant

> staph aureus). It's a very resistant bug which is passed around in

hospitals.

>

> I hope this helps. I know there are a lot of terms to get used to here,

> especially when you haven't been dealing with CF. You'll pick up the

terms

> pretty quick, though, and never hesitate to ask.

>

> RENEE, sometimes the doctors just can't get down deep enough with a deep

> throat culture, or sometimes not enough comes up in a sputum culture, for

> the bacteria to show up even if it's still in the lungs. Bronchs are

more

> reliable, but because they're so invasive and have thier risks, they

aren't

> done often. Some of the bugs, like pseudo, are just plain good at

" hiding " .

>

> Bye,

>

> , mom of Meagan 4 (cf, asthma) & Kailin 7 (asthma)

>

> > This is a secular list.

>

> 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.

>

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

>

> If you know someone who would find cfparents useful, have them follow

this link: http://www.onelist.com/subscribe/cfparents

>

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

>

> Come chat at our webpage! http://members.tripod.com/cfparents/

>

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

>