confused worried parents

[Guest guest]

congratulations on finally getting a diagnosis. the worst is over, almost.

No, my daughter was diagnosed at 7 days old. The not knowing for that short

period of time was the worst. I can't imagine 18 months. Anyway, people say

the best time to be born with this cf is now, if it has to happen. Things

change often. We get new meds to try, new treatments, and several different

ideas. This site will give you the best information, as far as I am

concerned. We go to the CF center at LeBonheur Children's Hospital in

Memphis and our dr is wonderful. My daughter is 10 now and had a rough last

year. She was in the hospital 6 times. Til 2 years ago, we hardly ever went

in the hospital. She is doing much better now because (I think) we are on a

new antibiotic. Anyway, I won't bore u with all the details, but I just

wanted to welcome you and your family to the site. Always ask and someone

here will answer. These people have learned by trial and error. I have

taken many of these ideas to our dr and he is open to new ideas. Every cf

patient is different. You never know what will work and it is better to have

many choices. Don't be impatient. That has been my biggest problem. I want

a cure now, but I'm am constantly telling myself to live each day to the

fullest. It's just that sometimes myself doesn't listen too well.

Sue Pettit

mom of 10 wcf, 15 wocf, 11 wocf

[Guest guest]

our 18 month old baby has just being diagnosed with cf we are

devastated of cause but ignorate of the disease, we have head nothing

but positive information, but we feel we need a more personal view on

life with cf.

we both work full time and dont no if can both continue work or even

if we should want to. our boy as had a cough for most of his life and

nothing seems particularly differnt about him. he is full of life and

a very happy boy.

i dont feel we are fully aware of the implications of such a disease,

as the doctors say they can fully intend to keep him healthy.

please tell us his this realistic can we both work are your children

healthy and lead normal lifes.

hope to hear from you soon.

[Guest guest]

Hello ,

We have something in common, our 8 week old baby was diagnosed at birth. I can

appreciate what you are going through. It is good that you have heard positive

information. It is also great that you have found this site. I think it is

great. You can't get any closer to the feelings, the ups, the downs, than here.

You know when you share your feelings here, someone, or possibly everyone

understands what you are going through. It helps me a great deal.

Hope that you feel better with time. Each day is getting a little better for me.

Cheryl

confused worried parents

our 18 month old baby has just being diagnosed with cf we are

devastated of cause but ignorate of the disease, we have head nothing

but positive information, but we feel we need a more personal view on

life with cf.

we both work full time and dont no if can both continue work or even

if we should want to. our boy as had a cough for most of his life and

nothing seems particularly differnt about him. he is full of life and

a very happy boy.

i dont feel we are fully aware of the implications of such a disease,

as the doctors say they can fully intend to keep him healthy.

please tell us his this realistic can we both work are your children

healthy and lead normal lifes.

hope to hear from you soon.

[Guest guest]

In a message dated 3/29/2002 7:24:09 PM Central Standard Time,

philshazuk@... writes:

>

> our 18 month old baby has just being diagnosed with CF we are

> devastated of cause but ignorate of the disease, we have head nothing

> but positive information, but we feel we need a more personal view on

> life with cf.

> we both work full time and dont no if can both continue work or even

> if we should want to. our boy as had a cough for most of his life and

> nothing seems particularly differnt about him. he is full of life and

> a very happy boy.

> i dont feel we are fully aware of the implications of such a disease,

> as the doctors say they can fully intend to keep him healthy.

> please tell us his this realistic can we both work are your children

> healthy and lead normal lifes.

> hope to hear from you soon.

My husband and I both work and it can be a struggle. One of you need a very

understanding job where you can bring you son to doctor appointments in any

given day. I have my own business so I am the one with flexibility. Where are

you from? We are in Iowa. Deb A

[Guest guest]

Dear worried parents.

If you would send me your snail mail I will be happy to send you ample

information on all sides of CF. My granddaughter is almost 18 and she has CF

.. she is getting ready to go away to college.----up in the mountains of NC

so she will be able to ski and still run cross country for the college team.

She is a big athlete at her high school and honor student as well. She

hasn't ever been on IV's or in hospital. Hopefully that will stay that way

for a long time. medical care

has come along way since she was DX at 2 days old. we still don't know all

the DNA info for sure...............her care is at Duke U medical CF Center

and is excellent. She does pulmozyme daily and does the vest t same time.

Please know it isn't all doom and gloom................Please let me send

you info -a couple tapes as well from those who have been there-------done

that

LOVE & HUGS,

grandmomBEV

Re: confused worried parents

In a message dated 3/29/2002 7:24:09 PM Central Standard Time,

philshazuk@... writes:

>

> our 18 month old baby has just being diagnosed with CF we are

> devastated of cause but ignorate of the disease, we have head nothing

> but positive information, but we feel we need a more personal view on

> life with cf.

> we both work full time and dont no if can both continue work or even

> if we should want to. our boy as had a cough for most of his life and

> nothing seems particularly differnt about him. he is full of life and

> a very happy boy.

> i dont feel we are fully aware of the implications of such a disease,

> as the doctors say they can fully intend to keep him healthy.

> please tell us his this realistic can we both work are your children

> healthy and lead normal lifes.

> hope to hear from you soon.

My husband and I both work and it can be a struggle. One of you need a very

understanding job where you can bring you son to doctor appointments in any

given day. I have my own business so I am the one with flexibility. Where

are

you from? We are in Iowa. Deb A

[Guest guest]

my daughter is 16 months old has been healthy and we both work but i work 1

st shift and hubby works 2 nd

be glad to talk!!!!!!!!

christy daughter w cf

[Guest guest]

Hi there--- I do think that all of us completely understand how you

feel right now. Actually, you may be surprised, your son may even be

healthier now that he is diagnosed and getting proper treatment. He

also have more energy (especially if he has needed enzymes and so

starts getting more nourishment from his food). That is certainly

what happened with our son, when he was first diagnosed at 22

months.

Anyway, let us (the list)know how we can help. My name is Jennie

(aka Jen) and I have 7 kids, three of whom have CF, and one has

juvenile diabetes. Once you get used to CF you adapt to the routine

and it becomes just part of your life.

take care,

Jen

[Guest guest]

Hi Phil,

That is a very personal decision. After my daughter was diagnosed I quit

work for about 9 months then went back part-time with the understanding that

I could run out the door at any time because I needed to go to the Doctor.

It also helps to have a very good babysitter and/or preschool. I had

both...the babysitter & preschool both gave her breathing treatments & (as

one mom put it) her " pat, pats " (i like that). You need a very good support

system.

Good Luck

mom of 2, Nikki 17 yrs. old w/CF

20 yrs. old

Remember your children are on " loan " from God.

Plus, it's the quality of life that is important, not the quantity.

confused worried parents

> our 18 month old baby has just being diagnosed with cf we are

> devastated of cause but ignorate of the disease, we have head nothing

> but positive information, but we feel we need a more personal view on

> life with cf.

> we both work full time and dont no if can both continue work or even

> if we should want to. our boy as had a cough for most of his life and

> nothing seems particularly differnt about him. he is full of life and

> a very happy boy.

> i dont feel we are fully aware of the implications of such a disease,

> as the doctors say they can fully intend to keep him healthy.

> please tell us his this realistic can we both work are your children

> healthy and lead normal lifes.

> hope to hear from you soon.

>

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> --------------------------------------------------

>

>

>

[Guest guest]

Hi Phil,

your worries and thoughts mirror exactly, what many of us have endured after

the dx. Try to relax (easier said than done, I know) and educate yourself

about CF.

After the dx at four months and two rough months until the first problems

were solved and the enzymes started to work, our daughter has been healthier

than the " normal " children in our neighborhood. She leads a normal life, but

then I think that she is more healthy than the average child with CF.

My wife is a stay-at home-mom, but if you have some family support it

should be possible for the both of you to work.

Peace

Torsten, dad of Fiona 5wcf

e-mail: torstenkrafft@...

confused worried parents

> our 18 month old baby has just being diagnosed with cf we are

> devastated of cause but ignorate of the disease, we have head nothing

> but positive information, but we feel we need a more personal view on

> life with cf.

> we both work full time and dont no if can both continue work or even

> if we should want to. our boy as had a cough for most of his life and

> nothing seems particularly differnt about him. he is full of life and

> a very happy boy.

> i dont feel we are fully aware of the implications of such a disease,

> as the doctors say they can fully intend to keep him healthy.

> please tell us his this realistic can we both work are your children

> healthy and lead normal lifes.

> hope to hear from you soon.

[Guest guest]

Hi Phil...

I also have a 22 month old that was diagnosed in Aug. We were very

overwhelmed at first but also a little releived that she finally had a

diagnsis because she was so very sick. But to see her now, healthy makes it

all worth it. I did not have enough flexibility in my job and was fired

because I had already missed so much work. I am finding being at home is

better because I can monitor her better and she seems to be more healthy. I

also spend my time trying to raise money for CF of filling out the mounds of

State paperwork and insurance claims for her. It DOES get better. Hang in

there and let us know if we can help.

Kim

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