Am I hitting a brick wall?

October 4, 2003

has been coughing incessantly! I took her to CF Center Monday - said

she had an infection (No kidding) put her on Cipro - she is also on

Zithromax. She is coughing and coughing and bringing up a lot. I don't really

have

too much confidence in this doctor and ability. I am looking into finding out

about other centers. If anyone out there is in Suffolk Co., NY please write

and tell me your experiences.

Rosemary in NY with 3 children (13, 10.6 and 6.6)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

October 6, 2003

Hi Rosemary -

I live in New York Cty, not Suffolk county. My son Charlie was being seen at

Columbia Presbyterian in New York and I lost confidence with the center, so

unfortunately I can't recommend them, although I know a lot of people are happy

with Columbia and confident in the docs. I ended up going all the way down to

CHOP (Children's Hospital of Philadelphia). Travelling down there is a complete

pain, except that after the first 2 or 3 treks down there we do most of the

normal stuff on the phone (colds, antibiotics, allergies). CHOP was a completely

different experience - a really experienced doctor who changed Charlie's meds

(nebs, antibiotics) which resulted in a big positive difference in his health.

We're lucky that our insurance covers most of the cost. Charlie's much healthier

then he was, and my confidence in his doc and nurses is high.

Once I really started to doubt Charlie's previous doctor, I ended up arguing