replies and update on us

[Guest guest]

Hi,

PAULA, the drinking Pulmozyme story is too funny (seeing as there were no

ill effects). Meagan took a more -like approach to her Tobra this

morning and " accidentally? " poured some of it out the mouthpiece by tipping

the nebulizer cup. Maybe it really was an accident, not sure. But I was

pretty frustrated.

MJ, gosh, I'm using the Oil of Olay and getting gray hair and I'm FAR from

being a grandma (oops, used that word again) anytime soon. And I didn't

have a single gray hair before Kailin was born 7 years ago (despite having

no CF, Kailin has encouraged quite a few of my gray hairs, I'm sure!).

You're absolutely right-- they're worth every gray hair, every night spent

tossing and turning thinking about all the medical issues (which is how I

spent last night), and everything else raising the little critters involves.

I can't imagine my life without my two mischevious little monsters :-) On

the staph question, Meagan cultured Staph A. last July. My understanding is

that young children with CF usually culture things like Staph and H.

Influenza. Our pulm only treats these if kids are symptomatic (Meagan was

with staph). On the other hand, in Denmark, Hoiby and his group aggressively

wipe out Staph and H. Flu when cultured. There's no " rule " for how long it

takes to culture pseudo after getting staph. I know of several adults with

CF who have only Staph, and have cultured it all their lives, but never

pseudo. Then there are some kids who culture pseudo as babies, never having

had staph or anything else first. Researchers believe there is a

relationship between the bacteria kids generally culture first (staph and H.

flu) and pseudomonas, but they haven't figured out what it is.

AMANDA, don't be sorry you sent your reply to Maggie to the whole list! You

have an absolute wealth of knowledge to share. Actually, you've just

answered many, questions that have been asked in the past on this list about

understanding what our various children's X-rays mean, what's " normal " ,

what's " normal for someone with CF " etc. Thanks for taking the time to

share what you learned at the conference about different " stages " of CF,

chest X-rays, PFT results, etc.

As for us, Meagan lost another tooth today! Right in front on top-- she's

got two missing now, and one half grown in from the first one she'd lost.

It's just too cute! She's even got a bit of a lisp with it :-) I found out

our pulm will only be in town on Thursday, and then gone for anther week, so

I left three different kinds of messages for her to call us on Thurs. to

discuss Meagan's treatment and the pseudo. M's been having more fatigue

again, isn't tolerating exercise (tired and short of breath), and her

low-grade fever's been 100 instead of the usual 99's. I am absolutely

convinced it's time to do some IV's and get this kid back in shape before

kindergarten in the fall, not to mention hitting Mr. Pseudomonas really

hard. The nurse practitioner says that if the pulm doesn't get back to us

on Thurs, that she'll extend the Tobra prescription herself until our pulm

gets back so at least we don't lose any ground with Meagan before then. But

we won't know what " the plan " is until we talk with our pulm.

I made an ENT appointment for Meagan for this Wed. afternoon, so we can

evaluate what role the sinuses might be playing in all this. But she

doesn't seem overly " sinusey " to me lately. My instinct is that it more a

pseudo/lung kind of thing, even though it isn't affecting her PFT's yet.

I also called the ENT nurse about setting up another sinus CT for Kailin (no

CF) to see if the sinus infections are clearing after antibiotics, and to

possibly discuss surgical options if they're not. The nurse will get back to

me after she talks to our ENT when she's in the office on Wed. As usual,

both kiddos are keeping us on our toes....

bye,

mom of meagan 5 (cf, asthma) and Kailin 7 (asthma)