Re: I'm new to CF...

[Guest guest]

boy does your story sound so familiar(ms). My daughter is 14

and was diagnosed just last yr also. The doctors all ways just

treated her for allergies and asthma, never tested for any thing

else. So here we are learning all we can learn to make it easier

for the kids and family.

Welcome

Margo

> I live in Fayetteville, Georgia. I have 2 children, a 13 year old

> daughter without CF and a 6 yr. old daughter which was just

diagnosed

> with CF in September of 2002. It took years of being demandant

that

> there was something else wrong with her other than asthma &

allergies.

> But the doctors didn't want to listen they knew more than we did.

> Finally, last Feb. I convinced a doctor to do a chest x-ray during

a

> rutine sick visit. They x-ray came back she had full blown

pnemonia.

> They doctor could not hear it with a stethescope even after she

knew

> exactly where it was. My daughter being born premmie had lung

damage.

> She learned to compensate for her breathing problems to the extent

she

> was breathing so light they couldn't hear her breathe. I finally

got

> her hooked up with a Pulmonologist at The Children's Hosp. He has

been

> wonderful! He has done many tests and basically showed I was not

> crazy. After being hospitalized in August with pnemonia, the doctor

> has concluded through testing that she had CF. We are starting to

use

> different meds and finding they work better than what she was

using.

> We now have the vest therapy and that is a life saver!!!Over the 6

> years we have learned what we can and can't do, the fatigue level,

> eating problems, extreme mucus problems, etc. We are open to any

> advise anyone can give us.

>

[Guest guest]

boy does your story sound so familiar(ms). My daughter is 14

and was diagnosed just last yr also. The doctors all ways just

treated her for allergies and asthma, never tested for any thing

else. So here we are learning all we can learn to make it easier

for the kids and family.

Welcome

Margo

> I live in Fayetteville, Georgia. I have 2 children, a 13 year old

> daughter without CF and a 6 yr. old daughter which was just

diagnosed

> with CF in September of 2002. It took years of being demandant

that

> there was something else wrong with her other than asthma &

allergies.

> But the doctors didn't want to listen they knew more than we did.

> Finally, last Feb. I convinced a doctor to do a chest x-ray during

a

> rutine sick visit. They x-ray came back she had full blown

pnemonia.

> They doctor could not hear it with a stethescope even after she

knew

> exactly where it was. My daughter being born premmie had lung

damage.

> She learned to compensate for her breathing problems to the extent

she

> was breathing so light they couldn't hear her breathe. I finally

got

> her hooked up with a Pulmonologist at The Children's Hosp. He has

been

> wonderful! He has done many tests and basically showed I was not

> crazy. After being hospitalized in August with pnemonia, the doctor

> has concluded through testing that she had CF. We are starting to

use

> different meds and finding they work better than what she was

using.

> We now have the vest therapy and that is a life saver!!!Over the 6

> years we have learned what we can and can't do, the fatigue level,

> eating problems, extreme mucus problems, etc. We are open to any

> advise anyone can give us.

>

[Guest guest]

Welcome to our list. I hope you find this list as supportive as I have.

Dawn mom of 4, 7 and under, the youngest wcf

[Guest guest]

Welcome to the list ! It sounds like you have a handle on things

already. No one wants their kids to be sick, but if they have CF this is a

very good place for you. We have parents of all ages, with all ages of

kids. I'm and my daughter age 19 has cf. she was diagnosed

at the age of 8 months. Remember no concern is too small or large for us,

we are always here to listen and help where we can.

love,

M

Wow we are getting tons of new members! How great!

[Guest guest]

Welcome ,

You have definately come to the right place. The parents and grandparents on

this list are absolutely AMAZING!!!!! I am sorry that your daughter has cf but

I am happy you stood your ground and got her tested, so now they can treat her.

Take care,

Deana

Mom to 12 ncf and 6 wcf

I'm new to CF...

I live in Fayetteville, Georgia. I have 2 children, a 13 year old

daughter without CF and a 6 yr. old daughter which was just diagnosed

with CF in September of 2002. It took years of being demandant that

there was something else wrong with her other than asthma & allergies.

But the doctors didn't want to listen they knew more than we did.

Finally, last Feb. I convinced a doctor to do a chest x-ray during a

rutine sick visit. They x-ray came back she had full blown pnemonia.

They doctor could not hear it with a stethescope even after she knew

exactly where it was. My daughter being born premmie had lung damage.

She learned to compensate for her breathing problems to the extent she

was breathing so light they couldn't hear her breathe. I finally got

her hooked up with a Pulmonologist at The Children's Hosp. He has been

wonderful! He has done many tests and basically showed I was not

crazy. After being hospitalized in August with pnemonia, the doctor

has concluded through testing that she had CF. We are starting to use

different meds and finding they work better than what she was using.

We now have the vest therapy and that is a life saver!!!Over the 6

years we have learned what we can and can't do, the fatigue level,

eating problems, extreme mucus problems, etc. We are open to any

advise anyone can give us.

[Guest guest]

Dear ,

I am also sorry she was DX with CF BUT, I know it is better to know what

& how to treat than to just keep trying anything.(that might still

happen some, but------). Anyway, If you would like n\me to send some

info/tapes/booklets, on CF, I would be very happy to do so. It takes

away the doom & gloom of CF for you & your daughters-yes, both of them.

Siblings get upset-scared-etc too ..

Just post me your mailing address. if possible today , as I will be gone

for all of next week. BUT, I can send when I get back also.. These lists

are wonderful ........WELCOME

LOVE & HUGS<

GrandmoMBEV

Re: I'm new to CF...

Welcome ,

You have definately come to the right place. The parents and

grandparents on this list are absolutely AMAZING!!!!! I am sorry that

your daughter has cf but I am happy you stood your ground and got her

tested, so now they can treat her.

Take care,

Deana

Mom to 12 ncf and 6 wcf

I'm new to CF...

I live in Fayetteville, Georgia. I have 2 children, a 13 year old

daughter without CF and a 6 yr. old daughter which was just diagnosed

with CF in September of 2002. It took years of being demandant that

there was something else wrong with her other than asthma & allergies.

But the doctors didn't want to listen they knew more than we did.

Finally, last Feb. I convinced a doctor to do a chest x-ray during a

rutine sick visit. They x-ray came back she had full blown pnemonia.

They doctor could not hear it with a stethescope even after she knew

exactly where it was. My daughter being born premmie had lung damage.

She learned to compensate for her breathing problems to the extent she

was breathing so light they couldn't hear her breathe. I finally got

her hooked up with a Pulmonologist at The Children's Hosp. He has been

wonderful! He has done many tests and basically showed I was not

crazy. After being hospitalized in August with pnemonia, the doctor

has concluded through testing that she had CF. We are starting to use

different meds and finding they work better than what she was using.

We now have the vest therapy and that is a life saver!!!Over the 6

years we have learned what we can and can't do, the fatigue level,

eating problems, extreme mucus problems, etc. We are open to any

advise anyone can give us.