Re: has Pneumonia, Im scared/P.O

[Guest guest]

Prevention is the KEY word here. If you feel he needs more than fight for

it. We are doing all sorts of things for prevention. I am always getting

praises about how well is doing and how good I'm taking care of his

needs. Let me tell you....it's not all me. His doctors play a big role in

that also. Maybe you could search for a different Dr. in your area who will

work with you. If I feel something's not working for then we change

his routine together. It's not always what the DOCTOR says.

I will be thinking of and I truly hope you can get things back to the

way they were...

from PA

[Guest guest]

What CF Center to you take to? If you don't already, get him to one

immediately. If you already are seen at a CF Center, find another one. I

don't know where you live, but I'm sure there is another center you could go

to.

By the way, one thing this disease teaches teaches all of us " Mama Bears " is:

NEVER retract your claws!!!!!!

Amber,

Nick's mom

[Guest guest]

> The pulmonogolist said that he doesn't need it yet, well what can I

do to

> prevent his lungs from getting scar tissue? He has lots of colds

since

> starting school, the doctors tell me that colds do no damage to the

lungs,

Are you serious??? What clinic do you go to??? Anytime my son has a

cough, it's antibiotics right away for him. Viral infections (like

colds) cause the lungs to be inflamed, allowing bacteria to take

hold, causing more inflammation, more mucus, more bacteria, more

inflammation, and on and on. Find another pediatric pulmonologist.

You may find that doctors vary greatly even within the same cf

clinic. Try switching to one of the other doctors there, first.

That should minimize the greif with your insurance company. Then if

that doesn't work, switch to another clinic.

When you say he doesn't have anything to clear his lungs, do you mean

that... He Doesn't Have Anything To Clear His Lungs??? Like, no p.t.

or vest or flutter??? My son is five years old just like yours. We

go to Pittsburgh Children's Hospital's cf clinic. He's been on

aerosols since he was a little baby (even with no symptoms), we

started doing manual chest p.t. on him before he was a week old JUST

TO PREVENT LUNG DAMAGE, and he's had the vest since he was two years

old. He also uses the flutter to help keep his lungs clear. He's

doing pretty well. It is well-documented that people with cystic

fibrosis who receive aggressive treatments and interventions do

better/ live longer. Ditch that doctor, he's a ninny.

> how the medicine

> zithromax works, I would really appreciate it.

Zithromax works like a charm (at least for my kid.) It kills some

bacteria (a good thing), decreases inflammation (a really good thing

in cf!), and is suspected of working some sort of magic in cf lungs

at a sub-microscopic level that isn't fully understood yet, but which

somehow improves pfts in patients who use it constantly at a dosage

of one dose per day, three days per week (an amazing thing.)

If you have time, look it up on PubMed

http://www.ncbi.nih.gov/entrez/query.fcgi

Just type the words zithromax cystic fibrosis in the search field and

several abstracts will come up for you to do a little light reading

on.

Good luck getting proper care for your child. It really should be

easier than this for you!

~

mommy of 3, 1 with cf