Re: daughter with CF

[Guest guest]

Jackie,

I am sorry to hear that your daughter has CF, but it is good that it was caught

early. I have a 19 month old daughter that has CF, she was diagnosed when she

was 4 months old. I used to freak out when she was little, but I have found

that kids, with CF or not, will get colds, and will get sick. I have always

gone with my gut feeling. If I thought there was something more than it seemed,

I took her to the doctor, and usually my suspicions were confirmed. I am glad

that you found us, there are so many people here and they are all wonderful!!!

Don't hesitate to ask us anything, someone here will have the answer for you!!!!

Katy

Mom to Austin 4 no CF & Piper 19 months w/CF

[Guest guest]

In a message dated 2/16/2004 10:39:30 PM Central Standard Time,

jdurham_24fan@... writes:

I am a mother of 3, an 8 year and 4 year old boys and a 10 month old girl.

We found our that our little girl had CF when we was five weeks old. She is

really doing pretty good. It is very scary because I never really know what to

do when she gets sick. We live in Kirksville, MO.

Hey that is not to far from me!!! I am about 13 miles south of Iowa City, Ia.

In fact my brother and two of my sisters went to college there!! I have three

kids also! An 11 year old, 9 year old and a 6 year old all girls. Two of them

have CF my oldest and youngest. Deb A

[Guest guest]

Hi Jackie,

Welcome to the list. I hope your little girl keeps doing well. What is her name?

I'm and I have 2 kids, Nick is 21 nocf and is 20 and has cf. We

have clinic today. She has been doing really well, but last night complained of

a sore throat. She also seems to be coughing a little more than usual. Well I

guess I will report tomorrow or later on how clinic goes. I was going to ask if

they would take her off Tobi but if she is sick they won't . We'll see, wish

us luck.

Welcome again Jackie, this is a great list for new parents.

love,

M

from Orange County Ca

[Guest guest]

In a message dated 2/21/2004 8:16:38 PM Central Standard Time,

jdurham_24fan@... writes:

What is Tobi?

Tobi is an inhaled antibiotic you hale through a nebulizer to get rid of

psuedomonas. Deb A

[Guest guest]

I would say that TOBI is an inhaled form of the antibiotic Tobramycin,

used against pseudomonas aeruginosa and other gram negative rods.

n, who can never resist just typing out loud . . . .

Re: daughter with CF

In a message dated 2/21/2004 8:16:38 PM Central Standard Time,

jdurham_24fan@... writes:

What is Tobi?

Tobi is an inhaled antibiotic you hale through a nebulizer to get rid of

psuedomonas. Deb A

[Guest guest]

Hi Jackie,

is a very cute name. was diagnosed at 8 months. It is best to

just go along and take things as they come. I used to spend all my time when

was doing well thinking about her next illness. That is no way to live!

Now we just are happy when she is well and we deal with it when she gets sick.

She is doing better with the Tobi, bactrim and extra nebs and Vests. Oh Tobi is

tobramycin, it is an antibiotic, but recently, well maybe not so recently

anymore(I think it was 1998), the company( blanking out on their name) who

makes it has packaged it especially for inhalation. used to inhale the

tobra which was intended for IV use years ago. Lots of people with cf did that.

Welcome again, I hope you are enjoying the list!

love,

M

mom of Nick age 21 nocf and age 20 wcf