Questions and Comments about CF

[Guest guest]

i keep getting page cant be displayed, am i doing something wrong?

Patty

> I have added all the questions and comment that have been sent in,

to our site. check it out at http://group.msn.com/TeamJane

if there are any more that I haven't put up, please keep them coming.

> Thanks for your help. I am really glad that I asked this

question. I now know that it's not just me who gets these weird

questions, comments and reactions.

>

> Mom of 5 with CF and one on the way

>

>

[Guest guest]

" But there's no history of it in our family! " Which led to explanations that it

has to come from both parents. NO one in either side of the family tried to

blame the other side, in our family, but I'm sure there have been cases of " Well

he/she didn't get it from OUR side of the family. " out there somewhere.

My first reaction was shock and disbelief. For months, there was a little voice

in the back of my head saying " One of these days the doctors will say they are

sorry, it's a mistake, he doesn't have cf. That was almost 18 years ago, and it

hasn't happened yet.

Dori Ownbey... " If I haven't grown up by now, I'm never going to. "

[Guest guest]

Hi all,

I don't post much, just a reader, but I wanted to add my two cents. I too

begged my daughters prior pediatrician to do tests knowing something was wrong.

They told me she was growing poorly because of her vegetarian diet and the

constant " cold " was because she was in daycare. I owe much gratitude to the

nurse who decided to go above the doctor's orders and test her pulse ox. 80 and

dropping. She was hospitalized and dx'ed with pneumonia. That was enough

for them and testing stopped. Her pulse ox went up after two days of oxygen

treatment and a round of augmentin but the cough never cleared up. They

insisted

she was fine and wouldn't even do another chest x-ray. Out of desperation I

changed doctors (this was number four). Finally a doctor with heart, he

insisted on a Chest X-ray and from there a CAT Scan. Turns out her lower left

lobe

was collapsed, as if that wasn't heart breaking enough we were referred to a

Pulmonologist who thought it would be a good idea to test for CF. It was if

we knew and didn't need the test to prove it. Our family thought it was

comforting to tell us there was no way. " It's not on either side of the

family! "

" She is fine, look at her she looks like a normal kid. " Well after the dx we

became honorary medical experts and everyone comes to us for advice, for

everthing and anything! But the worst job I now have is, as someone on the list

once referred to all of us, Poopologist. I get to change every stinky diaper

for

friends and family because, " After Channa's diapers these must smell like

roses! " Sure its heartbreaking, the idea that we may outlive our kids. I will

continue to spend nights crying for the crap my daughter has to put with and

wishing it would just go away. The first year after dx was the worst. We try

to learn as much as we can and we panic over the small things. But it does get

easier to handle. The heartbreak doesn't go away it just gets easier to cope

with.

Just my two cents, thanks for listening.

Pattie mom to Channa 5wcf.

[Guest guest]

Zach's pediatrician said she could tell by looking that he did not

have CF and tried to talk us out of having him tested. I was almost

convinced not to test him because she was so reluctant to test him.

For the three weeks from the test until we got the results I really

didn't even think about CF. I was sure he didn't have it and was

just waiting for her to tell me so.

We were devastated when we got the results. We thought all of his

problems were things he would just outgrow and now they were here to

stay. It has been 10 months since that day and Zach is doing much

better because he was properly diagnosed.

This experience taught me to ignore the flippant remarks of doctors

and let the results speak for themselves. Now if I could just learn

to ignore the flippant remarks of everyone else who can tell by

looking that he is not sick.

Sara - mommy of Zach 22 months

> I have added all the questions and comment that have been sent in,

to our site. check it out at http://group.msn.com/TeamJane

if there are any more that I haven't put up, please keep them coming.

> Thanks for your help. I am really glad that I asked this

question. I now know that it's not just me who gets these weird

questions, comments and reactions.

>

> Mom of 5 with CF and one on the way

>

>

[Guest guest]

I love when I call to say that their is an increased cough and she is

bringing up a lot more and I am advised (without that tone) to give her COUGH

MEDICINE!!!!!!

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

No, I get it, too, as do some others; try refresh or type the blooming link into

the

browser address bar--it is important to use IE or Netscape, if you have either.

n

Re: Questions and Comments about CF

i keep getting page cant be displayed, am i doing something wrong?

Patty

> I have added all the questions and comment that have been sent in,

to our site. check it out at http://group.msn.com/TeamJane

if there are any more that I haven't put up, please keep them coming.

> Thanks for your help. I am really glad that I asked this

question. I now know that it's not just me who gets these weird

questions, comments and reactions.

>

> Mom of 5 with CF and one on the way

>

>

[Guest guest]

HOWDEeeeeeee

It was nice to hear from you again. A VERY WELL WRITTEN POST!! thanks for

that . I am sure many felt as you did when it came to getting a proper DX.

I do hope we get to hear from you again soon. Have a wonderful new year

LOVE & HUGS< GrandmomBEV

Re: Questions and Comments about CF

Hi all,

I don't post much, just a reader, but I wanted to add my two cents. I too

begged my daughters prior pediatrician to do tests knowing something was

wrong.

They told me she was growing poorly because of her vegetarian diet and the

constant " cold " was because she was in daycare. I owe much gratitude to the

nurse who decided to go above the doctor's orders and test her pulse ox. 80

and

dropping. She was hospitalized and dx'ed with pneumonia. That was enough

for them and testing stopped. Her pulse ox went up after two days of oxygen

treatment and a round of augmentin but the cough never cleared up. They

insisted

she was fine and wouldn't even do another chest x-ray. Out of desperation I

changed doctors (this was number four). Finally a doctor with heart, he

insisted on a Chest X-ray and from there a CAT Scan. Turns out her lower

left lobe

was collapsed, as if that wasn't heart breaking enough we were referred to a

Pulmonologist who thought it would be a good idea to test for CF. It was if

we knew and didn't need the test to prove it. Our family thought it was

comforting to tell us there was no way. " It's not on either side of the

family! "

" She is fine, look at her she looks like a normal kid. " Well after the dx

we

became honorary medical experts and everyone comes to us for advice, for

everthing and anything! But the worst job I now have is, as someone on the

list

once referred to all of us, Poopologist. I get to change every stinky

diaper for

friends and family because, " After Channa's diapers these must smell like

roses! " Sure its heartbreaking, the idea that we may outlive our kids. I

will

continue to spend nights crying for the crap my daughter has to put with and

wishing it would just go away. The first year after dx was the worst. We

try

to learn as much as we can and we panic over the small things. But it does

get

easier to handle. The heartbreak doesn't go away it just gets easier to

cope

with.

Just my two cents, thanks for listening.

Pattie mom to Channa 5wcf.

[Guest guest]

See: rave reviews! I mean if Bev and I feel the same way, well we've just GOT

to

be right about your post! Love, n

Re: Questions and Comments about CF

Hi all,

I don't post much, just a reader, but I wanted to add my two cents. I too

begged my daughters prior pediatrician to do tests knowing something was

wrong.

They told me she was growing poorly because of her vegetarian diet and the

constant " cold " was because she was in daycare. I owe much gratitude to the

nurse who decided to go above the doctor's orders and test her pulse ox. 80

and

dropping. She was hospitalized and dx'ed with pneumonia. That was enough

for them and testing stopped. Her pulse ox went up after two days of oxygen

treatment and a round of augmentin but the cough never cleared up. They

insisted

she was fine and wouldn't even do another chest x-ray. Out of desperation I

changed doctors (this was number four). Finally a doctor with heart, he

insisted on a Chest X-ray and from there a CAT Scan. Turns out her lower

left lobe

was collapsed, as if that wasn't heart breaking enough we were referred to a

Pulmonologist who thought it would be a good idea to test for CF. It was if

we knew and didn't need the test to prove it. Our family thought it was

comforting to tell us there was no way. " It's not on either side of the

family! "

" She is fine, look at her she looks like a normal kid. " Well after the dx

we

became honorary medical experts and everyone comes to us for advice, for

everthing and anything! But the worst job I now have is, as someone on the

list

once referred to all of us, Poopologist. I get to change every stinky

diaper for

friends and family because, " After Channa's diapers these must smell like

roses! " Sure its heartbreaking, the idea that we may outlive our kids. I

will

continue to spend nights crying for the crap my daughter has to put with and

wishing it would just go away. The first year after dx was the worst. We

try

to learn as much as we can and we panic over the small things. But it does

get

easier to handle. The heartbreak doesn't go away it just gets easier to

cope

with.

Just my two cents, thanks for listening.

Pattie mom to Channa 5wcf.

[Guest guest]

I can hardly believe this! That is what they always tell us out here NOT to

do!

Good Grief, FN, what are we to do? AM, with love!

Re: Re: Questions and Comments about CF

I love when I call to say that their is an increased cough and she is

bringing up a lot more and I am advised (without that tone) to give her COUGH

MEDICINE!!!!!!

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

No, that was from a covering doctor for the CF CENTER!

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

Rosemary,

Is that from the docs office???

Re: Re: Questions and Comments about CF

I love when I call to say that their is an increased cough and she is

bringing up a lot more and I am advised (without that tone) to give her COUGH

MEDICINE!!!!!!

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

unbelievable! I mean, duh......they need to cough, not suppress it.

Re: Re: Questions and Comments about CF

No, that was from a covering doctor for the CF CENTER!

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

Dori,

That was the first thing I heard from both sides of our familys, it isnt

OUR families fault, My parents were divorced so you can only imagine the

field day one of my parents had with that. I know the feeling of waiting

for the phone to ring and them saying it was all a mistake. It has been 19

years for me and as in your case, it hasnt happened yet. All we can do is

pray for a cure and do the best we can in making sure the best care is given

to our children.

>

>Reply-To: cfparents

>To: <cfparents >

>Subject: Questions and Comments about CF

>Date: Fri, 2 Jan 2004 11:22:42 -0700

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>

> " But there's no history of it in our family! " Which led to explanations

>that it has to come from both parents. NO one in either side of the family

>tried to blame the other side, in our family, but I'm sure there have been

>cases of " Well he/she didn't get it from OUR side of the family. " out

>there somewhere.

>

>My first reaction was shock and disbelief. For months, there was a little

>voice in the back of my head saying " One of these days the doctors will say

>they are sorry, it's a mistake, he doesn't have cf. That was almost 18

>years ago, and it hasn't happened yet.

>

>Dori Ownbey... " If I haven't grown up by now, I'm never going to. "

>

>

>

[Guest guest]

Of course the first thing our families did was try to blame the other and

in my case my parents are divorced so the one parent had a field day saying

it wasnt OUR family who gave him this. My husband and I never questioned

where it came from we just cursed at the world that he has it. One of the

questions I use to get is when will he be in a wheel chair, they thought it

was Cerebral Palsy. CFor CP whats the difference. LOL Also the same old

questions, when will he out grow it, and is he getting any better. He doest

LOOK sick, I hate that one. DONT go by him you might CATCH it. (when

coughing) no matter how much you explain people only want to hear what they

want to hear. Oh well, thats my side of it.

>

>Reply-To: cfparents

>To: " CF Parents " <cfparents >, " CF_4_Christians "

><CF_4_Christians >, " CysticFibrosis2Chat "

>

>Subject: Questions and Comments about CF

>Date: Thu, 1 Jan 2004 18:44:32 -0500

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>

>Hi all,

>I am working on our family site and I have a favor to ask.

>

>I am working on a page about the most common questions and comments you

>hear when you say that you or your child has CF. Feel free to include the

>silly ones as well as the insensitive ones and the natural ones. Whatever

>sticks out in your mind most.

>For the parents, what was your first reaction aside from shock and despair

>or relief to have a diagnosis finally. For example, mine was " how do I know

>nothing about CF if it is the most common genetic illness among

>Caucasians? "

>Thanks

>

>

>