Hello

[Guest guest]

Torsten,

thanks for the welcome. Where do you live in Germany? We are now living in

Erkelenz which is close to Düsseldorf. Unfortunately we almost never have

snow in this area. Do you know of more Germans on this mailing list?

Take care

Tana

Re: Hello

> Hi Tana,

>

> welcome back to the list and welcome back to Germany. Did you have

> snow today?

>

> Good to hear that Miriam recovered fast from her bad cold.

>

> Peace

> Torsten

>

>

>

> > Hi everybody,

> >

> > some months ago I introduced myself to this mailinglist. That was

> when I was

> > still living in Prague, in the Czech Republic. Now I am back home

> in Germany

> > and finally also my PC is working again and it is so great to read

> all your

> > emails again.

> > My daughter had just her real first cold and it was really a

> nightmare since

> > she kept throughing up basically all the food she ate. The doc said

> there is

> > nothing one can do about it and that it is not due to CF?! Well now

> she is

> > fine again and actually for the first time in her life there were

> moments

> > where she could not wait to get her bottle! So at least she made up

> for all

> > the precious gramms she had lost while being ill. She is 16 mo, 75

> cm and 9

> > Kg.

> >

> > Tana

> > Christian 3 years wocf, Miriam 16 months wcf

>

>

>

> 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]

Torsten,

thanks for the welcome. Where do you live in Germany? We are now living in

Erkelenz which is close to Düsseldorf. Unfortunately we almost never have

snow in this area. Do you know of more Germans on this mailing list?

Take care

Tana

Re: Hello

> Hi Tana,

>

> welcome back to the list and welcome back to Germany. Did you have

> snow today?

>

> Good to hear that Miriam recovered fast from her bad cold.

>

> Peace

> Torsten

>

>

>

> > Hi everybody,

> >

> > some months ago I introduced myself to this mailinglist. That was

> when I was

> > still living in Prague, in the Czech Republic. Now I am back home

> in Germany

> > and finally also my PC is working again and it is so great to read

> all your

> > emails again.

> > My daughter had just her real first cold and it was really a

> nightmare since

> > she kept throughing up basically all the food she ate. The doc said

> there is

> > nothing one can do about it and that it is not due to CF?! Well now

> she is

> > fine again and actually for the first time in her life there were

> moments

> > where she could not wait to get her bottle! So at least she made up

> for all

> > the precious gramms she had lost while being ill. She is 16 mo, 75

> cm and 9

> > Kg.

> >

> > Tana

> > Christian 3 years wocf, Miriam 16 months wcf

>

>

>

> 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]

Torsten,

thanks for the welcome. Where do you live in Germany? We are now living in

Erkelenz which is close to Düsseldorf. Unfortunately we almost never have

snow in this area. Do you know of more Germans on this mailing list?

Take care

Tana

Re: Hello

> Hi Tana,

>

> welcome back to the list and welcome back to Germany. Did you have

> snow today?

>

> Good to hear that Miriam recovered fast from her bad cold.

>

> Peace

> Torsten

>

>

>

> > Hi everybody,

> >

> > some months ago I introduced myself to this mailinglist. That was

> when I was

> > still living in Prague, in the Czech Republic. Now I am back home

> in Germany

> > and finally also my PC is working again and it is so great to read

> all your

> > emails again.

> > My daughter had just her real first cold and it was really a

> nightmare since

> > she kept throughing up basically all the food she ate. The doc said

> there is

> > nothing one can do about it and that it is not due to CF?! Well now

> she is

> > fine again and actually for the first time in her life there were

> moments

> > where she could not wait to get her bottle! So at least she made up

> for all

> > the precious gramms she had lost while being ill. She is 16 mo, 75

> cm and 9

> > Kg.

> >

> > Tana

> > Christian 3 years wocf, Miriam 16 months wcf

>

>

>

> 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]

Please insist on having all of your children tested.

My daughter was 5 when she was finally diagnosed. I changed drs. 3x because

they kept telling me that I was over-reacting, they said she had bronchitis.

I thought she had asthma and I took her to the pulmonary dept at our local

childrens hospital. They confirmed the asthma but also sweat tested her for

cf(they test every child w/asthma for cf) they called the next day with a

positive result and they said to bring my son (he was 2 at the time) he was

negative but he is a carrier for cf.

I of course told all my old drs. off and told them that this simple test

was all they had to do. I'm hoping that this helped other families in my

situation.

As I said in a previous email, I remarried another cf carrier, we have a 3 yr

old without cf but our 11 wk old has cf. I never thought of having my

husband tested and I think even if we knew, I would still have my baby, he's

the light of our lives!

Please have your children tested, I will be thinking of you and you will be

in my prayers as will all the other cf families.

You can't imagine how much I have gained from this site, I'm a new member and

for the past 9 years I've felt like I've been fighting this alone, I know now

that I am not and look forward to everyones posts.

mom to ELizabeth 14 w/cf, Cody 11 wocf, Zoey 3 wocf, Evan 11 wks w/cf

[Guest guest]

In a message dated 12/2/2002 9:16:04 AM Central Standard Time,

nancijk@... writes:

> Hi,

> I have been lurking for about a week or so, Torsten invited me.....

> I have a 9 month old baby (Philip) that has spent about 6 months of his 9

> months with respertory infections and a cough that just never seems to go

> away. He had problems with his marconium as a newborn, he went from over

> 95th percentile in weight and hight to under 50 in both. If you kiss him,

> it

> is like kissing a salt shaker.

> I am fighting with the Dr.'s to test him for something. We have another

> appointment tomorrow. Thank you Lord he is doing better.

> They say that it can not be CF because he is my 7th child, and since it is

> genetic there is no way. After reading your posts I wonder about my 4th

> child. He sounds so much like some of your children.

> I wanted to let you know how much your posts have blessed me! There is more

> wisdom and comfort on this sight, you have really put so many things in my

> life in perspective. I have cried over the grandson and prayed for the

> sick.

> I have not posted because I do not know if Philip has CF or not and I felt

> funny posting on the sight without knowing if I had a child with CF or not.

>

> Have a great day!

> Nanci

Hi Nanci,

Everyone is welcome here if you have a child with CF or know of someone with

CF or if you are concern that your child might have CF. This is a GREAT way

to learn about CF even if you don't know for sure. I think everyone should be

aware of CF,

Even though you child is the 7th he still could have CF. And if he is tested

positive I strong believe you should test all of the kids just to ease your

peace of mind. I have two with CF and after we learned more about CF I new my

youngest had it too. At the time we were only testing my oldest because she

had polyps in her nose and lots of sinus problems. I also have third child

that didn't have any of the symptoms that my other to did but I wanted to

test her just to make sure. I hope you child does not have CF but if he does

you have every support you can need right here waiting to lend you a shoulder

when you need it. You will love this group. Deb A

[Guest guest]

In a message dated 12/2/2002 9:16:04 AM Central Standard Time,

nancijk@... writes:

> Hi,

> I have been lurking for about a week or so, Torsten invited me.....

> I have a 9 month old baby (Philip) that has spent about 6 months of his 9

> months with respertory infections and a cough that just never seems to go

> away. He had problems with his marconium as a newborn, he went from over

> 95th percentile in weight and hight to under 50 in both. If you kiss him,

> it

> is like kissing a salt shaker.

> I am fighting with the Dr.'s to test him for something. We have another

> appointment tomorrow. Thank you Lord he is doing better.

> They say that it can not be CF because he is my 7th child, and since it is

> genetic there is no way. After reading your posts I wonder about my 4th

> child. He sounds so much like some of your children.

> I wanted to let you know how much your posts have blessed me! There is more

> wisdom and comfort on this sight, you have really put so many things in my

> life in perspective. I have cried over the grandson and prayed for the

> sick.

> I have not posted because I do not know if Philip has CF or not and I felt

> funny posting on the sight without knowing if I had a child with CF or not.

>

> Have a great day!

> Nanci

Hi Nanci,

Everyone is welcome here if you have a child with CF or know of someone with

CF or if you are concern that your child might have CF. This is a GREAT way

to learn about CF even if you don't know for sure. I think everyone should be

aware of CF,

Even though you child is the 7th he still could have CF. And if he is tested

positive I strong believe you should test all of the kids just to ease your

peace of mind. I have two with CF and after we learned more about CF I new my

youngest had it too. At the time we were only testing my oldest because she

had polyps in her nose and lots of sinus problems. I also have third child

that didn't have any of the symptoms that my other to did but I wanted to

test her just to make sure. I hope you child does not have CF but if he does

you have every support you can need right here waiting to lend you a shoulder

when you need it. You will love this group. Deb A

[Guest guest]

In a message dated 12/2/2002 9:16:04 AM Central Standard Time,

nancijk@... writes:

> Hi,

> I have been lurking for about a week or so, Torsten invited me.....

> I have a 9 month old baby (Philip) that has spent about 6 months of his 9

> months with respertory infections and a cough that just never seems to go

> away. He had problems with his marconium as a newborn, he went from over

> 95th percentile in weight and hight to under 50 in both. If you kiss him,

> it

> is like kissing a salt shaker.

> I am fighting with the Dr.'s to test him for something. We have another

> appointment tomorrow. Thank you Lord he is doing better.

> They say that it can not be CF because he is my 7th child, and since it is

> genetic there is no way. After reading your posts I wonder about my 4th

> child. He sounds so much like some of your children.

> I wanted to let you know how much your posts have blessed me! There is more

> wisdom and comfort on this sight, you have really put so many things in my

> life in perspective. I have cried over the grandson and prayed for the

> sick.

> I have not posted because I do not know if Philip has CF or not and I felt

> funny posting on the sight without knowing if I had a child with CF or not.

>

> Have a great day!

> Nanci

Hi Nanci,

Everyone is welcome here if you have a child with CF or know of someone with

CF or if you are concern that your child might have CF. This is a GREAT way

to learn about CF even if you don't know for sure. I think everyone should be

aware of CF,

Even though you child is the 7th he still could have CF. And if he is tested

positive I strong believe you should test all of the kids just to ease your

peace of mind. I have two with CF and after we learned more about CF I new my

youngest had it too. At the time we were only testing my oldest because she

had polyps in her nose and lots of sinus problems. I also have third child

that didn't have any of the symptoms that my other to did but I wanted to

test her just to make sure. I hope you child does not have CF but if he does

you have every support you can need right here waiting to lend you a shoulder

when you need it. You will love this group. Deb A

[Guest guest]

Hi !

I have a child named too! But with 2 L's.

The doctors are wrong in saying he can't have cf because he is the

7th child. It is absolutely silly of them. Just because the odds are

not in favor of this, it does not mean anything. I would like to

speak to those doctors.

Plenty of people are on the lists while they await diagnosis. I can't

think of a better place to be.

Push for the tests and if you don't get them, let me know and

together we will call the CF Foundation and be sure he gets the tests

he needs.

Especially because he is so salty.

-Lenora in Colorado

>Hi,

>I have been lurking for about a week or so, Torsten invited me.....

>I have a 9 month old baby (Philip) that has spent about 6 months of his 9

>months with respertory infections and a cough that just never seems to go

>away. He had problems with his marconium as a newborn, he went from over

>95th percentile in weight and hight to under 50 in both. If you kiss him, it

>is like kissing a salt shaker.

>I am fighting with the Dr.'s to test him for something. We have another

>appointment tomorrow. Thank you Lord he is doing better.

>They say that it can not be CF because he is my 7th child, and since it is

>genetic there is no way. After reading your posts I wonder about my 4th

>child. He sounds so much like some of your children.

>I wanted to let you know how much your posts have blessed me! There is more

>wisdom and comfort on this sight, you have really put so many things in my

>life in perspective. I have cried over the grandson and prayed for the sick.

>I have not posted because I do not know if Philip has CF or not and I felt

>funny posting on the sight without knowing if I had a child with CF or not.

>

>Have a great day!

>Nanci

>

>

>

[Guest guest]

Hi !

I have a child named too! But with 2 L's.

The doctors are wrong in saying he can't have cf because he is the

7th child. It is absolutely silly of them. Just because the odds are

not in favor of this, it does not mean anything. I would like to

speak to those doctors.

Plenty of people are on the lists while they await diagnosis. I can't

think of a better place to be.

Push for the tests and if you don't get them, let me know and

together we will call the CF Foundation and be sure he gets the tests

he needs.

Especially because he is so salty.

-Lenora in Colorado

>Hi,

>I have been lurking for about a week or so, Torsten invited me.....

>I have a 9 month old baby (Philip) that has spent about 6 months of his 9

>months with respertory infections and a cough that just never seems to go

>away. He had problems with his marconium as a newborn, he went from over

>95th percentile in weight and hight to under 50 in both. If you kiss him, it

>is like kissing a salt shaker.

>I am fighting with the Dr.'s to test him for something. We have another

>appointment tomorrow. Thank you Lord he is doing better.

>They say that it can not be CF because he is my 7th child, and since it is

>genetic there is no way. After reading your posts I wonder about my 4th

>child. He sounds so much like some of your children.

>I wanted to let you know how much your posts have blessed me! There is more

>wisdom and comfort on this sight, you have really put so many things in my

>life in perspective. I have cried over the grandson and prayed for the sick.

>I have not posted because I do not know if Philip has CF or not and I felt

>funny posting on the sight without knowing if I had a child with CF or not.

>

>Have a great day!

>Nanci

>

>

>

[Guest guest]

Hi !

I have a child named too! But with 2 L's.

The doctors are wrong in saying he can't have cf because he is the

7th child. It is absolutely silly of them. Just because the odds are

not in favor of this, it does not mean anything. I would like to

speak to those doctors.

Plenty of people are on the lists while they await diagnosis. I can't

think of a better place to be.

Push for the tests and if you don't get them, let me know and

together we will call the CF Foundation and be sure he gets the tests

he needs.

Especially because he is so salty.

-Lenora in Colorado

>Hi,

>I have been lurking for about a week or so, Torsten invited me.....

>I have a 9 month old baby (Philip) that has spent about 6 months of his 9

>months with respertory infections and a cough that just never seems to go

>away. He had problems with his marconium as a newborn, he went from over

>95th percentile in weight and hight to under 50 in both. If you kiss him, it

>is like kissing a salt shaker.

>I am fighting with the Dr.'s to test him for something. We have another

>appointment tomorrow. Thank you Lord he is doing better.

>They say that it can not be CF because he is my 7th child, and since it is

>genetic there is no way. After reading your posts I wonder about my 4th

>child. He sounds so much like some of your children.

>I wanted to let you know how much your posts have blessed me! There is more

>wisdom and comfort on this sight, you have really put so many things in my

>life in perspective. I have cried over the grandson and prayed for the sick.

>I have not posted because I do not know if Philip has CF or not and I felt

>funny posting on the sight without knowing if I had a child with CF or not.

>

>Have a great day!

>Nanci

>

>

>

[Guest guest]

Nanci,

I am glad that you came out of hiding! It's really tough to have a

sick child and no diagnosis. I hope you get some answers very soon.

I have an 11 month old grand daughter (Abigail, also known as Abby)

with CF. Abby was diagnosed at 3 months. We worry about her, but we

also enjoy her tremendously. Children add so much meaning to your

life. I guess you already know that, with seven children.

Thanks for joining the group. Please keep us posted on Philip's

condition.

Gale

> Hi,

> I have been lurking for about a week or so, Torsten invited me.....

> I have a 9 month old baby (Philip) that has spent about 6 months of

his 9

> months with respertory infections and a cough that just never seems

to go

> away. He had problems with his marconium as a newborn, he went from

over

> 95th percentile in weight and hight to under 50 in both. If you

kiss him, it

> is like kissing a salt shaker.

> I am fighting with the Dr.'s to test him for something. We have

another

> appointment tomorrow. Thank you Lord he is doing better.

> They say that it can not be CF because he is my 7th child, and

since it is

> genetic there is no way. After reading your posts I wonder about my

4th

> child. He sounds so much like some of your children.

> I wanted to let you know how much your posts have blessed me! There

is more

> wisdom and comfort on this sight, you have really put so many

things in my

> life in perspective. I have cried over the grandson and prayed for

the sick.

> I have not posted because I do not know if Philip has CF or not

and I felt

> funny posting on the sight without knowing if I had a child with CF

or not.

>

> Have a great day!

> Nanci

[Guest guest]

Nanci,

I am glad that you came out of hiding! It's really tough to have a

sick child and no diagnosis. I hope you get some answers very soon.

I have an 11 month old grand daughter (Abigail, also known as Abby)

with CF. Abby was diagnosed at 3 months. We worry about her, but we

also enjoy her tremendously. Children add so much meaning to your

life. I guess you already know that, with seven children.

Thanks for joining the group. Please keep us posted on Philip's

condition.

Gale

> Hi,

> I have been lurking for about a week or so, Torsten invited me.....

> I have a 9 month old baby (Philip) that has spent about 6 months of

his 9

> months with respertory infections and a cough that just never seems

to go

> away. He had problems with his marconium as a newborn, he went from

over

> 95th percentile in weight and hight to under 50 in both. If you

kiss him, it

> is like kissing a salt shaker.

> I am fighting with the Dr.'s to test him for something. We have

another

> appointment tomorrow. Thank you Lord he is doing better.

> They say that it can not be CF because he is my 7th child, and

since it is

> genetic there is no way. After reading your posts I wonder about my

4th

> child. He sounds so much like some of your children.

> I wanted to let you know how much your posts have blessed me! There

is more

> wisdom and comfort on this sight, you have really put so many

things in my

> life in perspective. I have cried over the grandson and prayed for

the sick.

> I have not posted because I do not know if Philip has CF or not

and I felt

> funny posting on the sight without knowing if I had a child with CF

or not.

>

> Have a great day!

> Nanci

[Guest guest]

Good idea, better to know & care properly . Then to rely on wishful

thinking.best wishes on that though

LOVE & HUGS, grandmomBEV

Re: Hello

Please insist on having all of your children tested.

My daughter was 5 when she was finally diagnosed. I changed drs. 3x

because

they kept telling me that I was over-reacting, they said she had

bronchitis.

I thought she had asthma and I took her to the pulmonary dept at our

local

childrens hospital. They confirmed the asthma but also sweat tested her

for

cf(they test every child w/asthma for cf) they called the next day with

a

positive result and they said to bring my son (he was 2 at the time) he

was

negative but he is a carrier for cf.

I of course told all my old drs. off and told them that this simple

test

was all they had to do. I'm hoping that this helped other families in

my

situation.

As I said in a previous email, I remarried another cf carrier, we have a

3 yr

old without cf but our 11 wk old has cf. I never thought of having my

husband tested and I think even if we knew, I would still have my baby,

he's

the light of our lives!

Please have your children tested, I will be thinking of you and you will

be

in my prayers as will all the other cf families.

You can't imagine how much I have gained from this site, I'm a new

member and

for the past 9 years I've felt like I've been fighting this alone, I

know now

that I am not and look forward to everyones posts.

mom to ELizabeth 14 w/cf, Cody 11 wocf, Zoey 3 wocf, Evan 11 wks w/cf

[Guest guest]

Good idea, better to know & care properly . Then to rely on wishful

thinking.best wishes on that though

LOVE & HUGS, grandmomBEV

Re: Hello

Please insist on having all of your children tested.

My daughter was 5 when she was finally diagnosed. I changed drs. 3x

because

they kept telling me that I was over-reacting, they said she had

bronchitis.

I thought she had asthma and I took her to the pulmonary dept at our

local

childrens hospital. They confirmed the asthma but also sweat tested her

for

cf(they test every child w/asthma for cf) they called the next day with

a

positive result and they said to bring my son (he was 2 at the time) he

was

negative but he is a carrier for cf.

I of course told all my old drs. off and told them that this simple

test

was all they had to do. I'm hoping that this helped other families in

my

situation.

As I said in a previous email, I remarried another cf carrier, we have a

3 yr

old without cf but our 11 wk old has cf. I never thought of having my

husband tested and I think even if we knew, I would still have my baby,

he's

the light of our lives!

Please have your children tested, I will be thinking of you and you will

be

in my prayers as will all the other cf families.

You can't imagine how much I have gained from this site, I'm a new

member and

for the past 9 years I've felt like I've been fighting this alone, I

know now

that I am not and look forward to everyones posts.

mom to ELizabeth 14 w/cf, Cody 11 wocf, Zoey 3 wocf, Evan 11 wks w/cf

[Guest guest]

Welcome, Nanci.

I think you should buy a genetic textbook, go to your doctor's office,

and whomp him upside his fat head with it. Maybe that't the only way

to open his mind.

Before my son was 4 1/2 years old, he saw two pediatricians, an

allergy specialist and an ENT. I took him to a third pediatrician to

get a second opinion about the possibility of asthma. That doctor sent

him for an x-ray, a radiologist read it -- and still none of them ever

thought about CF.

These doctors all had 's classic textbook CF symptoms noted in

his chart, but still no one connected the dots leading to CF.

The week after the asthma diagnosis, in a series of " mini

epiphanies, " I looked in the phone book to see if there were any

organziations supporting CF. There was, so I called, and the very

helpful, warm young woman asked me all these questions -- I knew from

the questions that my son had CF.

I called the third pediatrician back and said, " I want him him tested

for CF. " The doctor was really rattled. He asked if there was a family

history (no) and he said doesn't look like kids with CF. He told

me kids with CF look like they're from Biafra. I said, " You didn't see

with his clothes off. His arms and legs have gotten very thin,

he has a pot belly, and I even asked you why he was suddenly producing

very foul smelling gas. I want him tested for CF. "

The doctor agreed, saying it was just to rule it out and put my mind

at ease. He felt sure the sweat test would be negative; I knew it

would be positive. Two days later we went for the test and got the

results that afternoon. Everyone, including 's dad, was shocked.

I was relieved to finally know I wasn't crazy... Ever since my son

was a couple weeks old, I had a feeling something was wrong, and

as he got older I felt there was something more than " Just another

respiratory virus; just another stomach virus, just another ear

infection, just another bout of bronchititis... " And the excuse I

hated most: " He'll probably grow up to be just like every other

firstborn Oklahoma son; he'll have allergies and asthma. " (He does

have allergies and asthma, but I hated that his first pediatrician

blew this off as " acceptable. " )

I was a stay-at-home mom, obsessed with proper nutrition and keeping a

very clean house. And we lived on a farm, so it's not like we had

daily contact in public places. So it just didn't make sense to me

that my baby was picking up viruses like a Hoover vacuum cleaner picks

up dust!

Demand the test; if your doctor won't authorize it, call your state CF

Foundation office to get the location of the nearest CF testing

center -- call them to make an appointment yourself.

If your doctor does agree, DON'T let him send you anywhere but a CF

Center for testing. There are some doctors that sweat test in their

office or send you to a local lab for the test, but they don't do

these tests often enough to have the expertise and the sweat test is

very sensitive.

Best of luck to you and your family. When you're up to it, I hope

you'll introduce us to your big family!

Kim

Mom to (23 with cf and asthma) and (20 asthma no cf)

Hi,

I have been lurking for about a week or so, Torsten invited me.....

I have a 9 month old baby (Philip) that has spent about 6 months of

his 9 months with respertory infections and a cough that just never

seems to go away. He had problems with his marconium as a newborn, he

went from over 95th percentile in weight and hight to under 50 in

both. If you kiss him, it is like kissing a salt shaker.

I am fighting with the Dr.'s to test him for something. We have

another appointment tomorrow. Thank you Lord he is doing better. They

say that it can not be CF because he is my 7th child, and since it is

genetic there is no way. After reading your posts I wonder about my

4th child. He sounds so much like some of your children.

I wanted to let you know how much your posts have blessed me! There

is more wisdom and comfort on this sight, you have really put so many

things in my life in perspective. I have cried over the grandson and

prayed for the sick.

I have not posted because I do not know if Philip has CF or not and

I felt funny posting on the sight without knowing if I had a child

with CF or not.

Have a great day!

Nanci

[Guest guest]

Welcome, Nanci.

I think you should buy a genetic textbook, go to your doctor's office,

and whomp him upside his fat head with it. Maybe that't the only way

to open his mind.

Before my son was 4 1/2 years old, he saw two pediatricians, an

allergy specialist and an ENT. I took him to a third pediatrician to

get a second opinion about the possibility of asthma. That doctor sent

him for an x-ray, a radiologist read it -- and still none of them ever

thought about CF.

These doctors all had 's classic textbook CF symptoms noted in

his chart, but still no one connected the dots leading to CF.

The week after the asthma diagnosis, in a series of " mini

epiphanies, " I looked in the phone book to see if there were any

organziations supporting CF. There was, so I called, and the very

helpful, warm young woman asked me all these questions -- I knew from

the questions that my son had CF.

I called the third pediatrician back and said, " I want him him tested

for CF. " The doctor was really rattled. He asked if there was a family

history (no) and he said doesn't look like kids with CF. He told

me kids with CF look like they're from Biafra. I said, " You didn't see

with his clothes off. His arms and legs have gotten very thin,

he has a pot belly, and I even asked you why he was suddenly producing

very foul smelling gas. I want him tested for CF. "

The doctor agreed, saying it was just to rule it out and put my mind

at ease. He felt sure the sweat test would be negative; I knew it

would be positive. Two days later we went for the test and got the

results that afternoon. Everyone, including 's dad, was shocked.

I was relieved to finally know I wasn't crazy... Ever since my son

was a couple weeks old, I had a feeling something was wrong, and

as he got older I felt there was something more than " Just another

respiratory virus; just another stomach virus, just another ear

infection, just another bout of bronchititis... " And the excuse I

hated most: " He'll probably grow up to be just like every other

firstborn Oklahoma son; he'll have allergies and asthma. " (He does

have allergies and asthma, but I hated that his first pediatrician

blew this off as " acceptable. " )

I was a stay-at-home mom, obsessed with proper nutrition and keeping a

very clean house. And we lived on a farm, so it's not like we had

daily contact in public places. So it just didn't make sense to me

that my baby was picking up viruses like a Hoover vacuum cleaner picks

up dust!

Demand the test; if your doctor won't authorize it, call your state CF

Foundation office to get the location of the nearest CF testing

center -- call them to make an appointment yourself.

If your doctor does agree, DON'T let him send you anywhere but a CF

Center for testing. There are some doctors that sweat test in their

office or send you to a local lab for the test, but they don't do

these tests often enough to have the expertise and the sweat test is

very sensitive.

Best of luck to you and your family. When you're up to it, I hope

you'll introduce us to your big family!

Kim

Mom to (23 with cf and asthma) and (20 asthma no cf)

Hi,

I have been lurking for about a week or so, Torsten invited me.....

I have a 9 month old baby (Philip) that has spent about 6 months of

his 9 months with respertory infections and a cough that just never

seems to go away. He had problems with his marconium as a newborn, he

went from over 95th percentile in weight and hight to under 50 in

both. If you kiss him, it is like kissing a salt shaker.

I am fighting with the Dr.'s to test him for something. We have

another appointment tomorrow. Thank you Lord he is doing better. They

say that it can not be CF because he is my 7th child, and since it is

genetic there is no way. After reading your posts I wonder about my

4th child. He sounds so much like some of your children.

I wanted to let you know how much your posts have blessed me! There

is more wisdom and comfort on this sight, you have really put so many

things in my life in perspective. I have cried over the grandson and

prayed for the sick.

I have not posted because I do not know if Philip has CF or not and

I felt funny posting on the sight without knowing if I had a child

with CF or not.

Have a great day!

Nanci

[Guest guest]

Welcome, Nanci.

I think you should buy a genetic textbook, go to your doctor's office,

and whomp him upside his fat head with it. Maybe that't the only way

to open his mind.

Before my son was 4 1/2 years old, he saw two pediatricians, an

allergy specialist and an ENT. I took him to a third pediatrician to

get a second opinion about the possibility of asthma. That doctor sent

him for an x-ray, a radiologist read it -- and still none of them ever

thought about CF.

These doctors all had 's classic textbook CF symptoms noted in

his chart, but still no one connected the dots leading to CF.

The week after the asthma diagnosis, in a series of " mini

epiphanies, " I looked in the phone book to see if there were any

organziations supporting CF. There was, so I called, and the very

helpful, warm young woman asked me all these questions -- I knew from

the questions that my son had CF.

I called the third pediatrician back and said, " I want him him tested

for CF. " The doctor was really rattled. He asked if there was a family

history (no) and he said doesn't look like kids with CF. He told

me kids with CF look like they're from Biafra. I said, " You didn't see

with his clothes off. His arms and legs have gotten very thin,

he has a pot belly, and I even asked you why he was suddenly producing

very foul smelling gas. I want him tested for CF. "

The doctor agreed, saying it was just to rule it out and put my mind

at ease. He felt sure the sweat test would be negative; I knew it

would be positive. Two days later we went for the test and got the

results that afternoon. Everyone, including 's dad, was shocked.

I was relieved to finally know I wasn't crazy... Ever since my son

was a couple weeks old, I had a feeling something was wrong, and

as he got older I felt there was something more than " Just another

respiratory virus; just another stomach virus, just another ear

infection, just another bout of bronchititis... " And the excuse I

hated most: " He'll probably grow up to be just like every other

firstborn Oklahoma son; he'll have allergies and asthma. " (He does

have allergies and asthma, but I hated that his first pediatrician

blew this off as " acceptable. " )

I was a stay-at-home mom, obsessed with proper nutrition and keeping a

very clean house. And we lived on a farm, so it's not like we had

daily contact in public places. So it just didn't make sense to me

that my baby was picking up viruses like a Hoover vacuum cleaner picks

up dust!

Demand the test; if your doctor won't authorize it, call your state CF

Foundation office to get the location of the nearest CF testing

center -- call them to make an appointment yourself.

If your doctor does agree, DON'T let him send you anywhere but a CF

Center for testing. There are some doctors that sweat test in their

office or send you to a local lab for the test, but they don't do

these tests often enough to have the expertise and the sweat test is

very sensitive.

Best of luck to you and your family. When you're up to it, I hope

you'll introduce us to your big family!

Kim

Mom to (23 with cf and asthma) and (20 asthma no cf)

Hi,

I have been lurking for about a week or so, Torsten invited me.....

I have a 9 month old baby (Philip) that has spent about 6 months of

his 9 months with respertory infections and a cough that just never

seems to go away. He had problems with his marconium as a newborn, he

went from over 95th percentile in weight and hight to under 50 in

both. If you kiss him, it is like kissing a salt shaker.

I am fighting with the Dr.'s to test him for something. We have

another appointment tomorrow. Thank you Lord he is doing better. They

say that it can not be CF because he is my 7th child, and since it is

genetic there is no way. After reading your posts I wonder about my

4th child. He sounds so much like some of your children.

I wanted to let you know how much your posts have blessed me! There

is more wisdom and comfort on this sight, you have really put so many

things in my life in perspective. I have cried over the grandson and

prayed for the sick.

I have not posted because I do not know if Philip has CF or not and

I felt funny posting on the sight without knowing if I had a child

with CF or not.

Have a great day!

Nanci

[Guest guest]

You are most welcome here anytime. I hope all is well with the results.

It is always a comfort to talk to others who have been there done

that....many have waited for the DX as you are too

Torsten was so right in asking you here. He is a big help to many .

LOVE & HUGS, grandmomBEV

Re: Hello

In a message dated 12/2/2002 9:16:04 AM Central Standard Time,

nancijk@... writes:

> Hi,

> I have been lurking for about a week or so, Torsten invited me..... I

> have a 9 month old baby (Philip) that has spent about 6 months of his

> 9 months with respertory infections and a cough that just never seems

> to go away. He had problems with his marconium as a newborn, he went

> from over 95th percentile in weight and hight to under 50 in both. If

> you kiss him, it is like kissing a salt shaker.

> I am fighting with the Dr.'s to test him for something. We have

another

> appointment tomorrow. Thank you Lord he is doing better.

> They say that it can not be CF because he is my 7th child, and since

it is

> genetic there is no way. After reading your posts I wonder about my

4th

> child. He sounds so much like some of your children.

> I wanted to let you know how much your posts have blessed me! There is

more

> wisdom and comfort on this sight, you have really put so many things

in my

> life in perspective. I have cried over the grandson and prayed for the

> sick.

> I have not posted because I do not know if Philip has CF or not and I

felt

> funny posting on the sight without knowing if I had a child with CF or

not.

>

> Have a great day!

> Nanci

Hi Nanci,

Everyone is welcome here if you have a child with CF or know of someone

with

CF or if you are concern that your child might have CF. This is a GREAT

way

to learn about CF even if you don't know for sure. I think everyone

should be

aware of CF,

Even though you child is the 7th he still could have CF. And if he is

tested

positive I strong believe you should test all of the kids just to ease

your

peace of mind. I have two with CF and after we learned more about CF I

new my

youngest had it too. At the time we were only testing my oldest because

she

had polyps in her nose and lots of sinus problems. I also have third

child

that didn't have any of the symptoms that my other to did but I wanted

to

test her just to make sure. I hope you child does not have CF but if he

does

you have every support you can need right here waiting to lend you a

shoulder

when you need it. You will love this group. Deb A

[Guest guest]

You are most welcome here anytime. I hope all is well with the results.

It is always a comfort to talk to others who have been there done

that....many have waited for the DX as you are too

Torsten was so right in asking you here. He is a big help to many .

LOVE & HUGS, grandmomBEV

Re: Hello

In a message dated 12/2/2002 9:16:04 AM Central Standard Time,

nancijk@... writes:

> Hi,

> I have been lurking for about a week or so, Torsten invited me..... I

> have a 9 month old baby (Philip) that has spent about 6 months of his

> 9 months with respertory infections and a cough that just never seems

> to go away. He had problems with his marconium as a newborn, he went

> from over 95th percentile in weight and hight to under 50 in both. If

> you kiss him, it is like kissing a salt shaker.

> I am fighting with the Dr.'s to test him for something. We have

another

> appointment tomorrow. Thank you Lord he is doing better.

> They say that it can not be CF because he is my 7th child, and since

it is

> genetic there is no way. After reading your posts I wonder about my

4th

> child. He sounds so much like some of your children.

> I wanted to let you know how much your posts have blessed me! There is

more

> wisdom and comfort on this sight, you have really put so many things

in my

> life in perspective. I have cried over the grandson and prayed for the

> sick.

> I have not posted because I do not know if Philip has CF or not and I

felt

> funny posting on the sight without knowing if I had a child with CF or

not.

>

> Have a great day!

> Nanci

Hi Nanci,

Everyone is welcome here if you have a child with CF or know of someone

with

CF or if you are concern that your child might have CF. This is a GREAT

way

to learn about CF even if you don't know for sure. I think everyone

should be

aware of CF,

Even though you child is the 7th he still could have CF. And if he is

tested

positive I strong believe you should test all of the kids just to ease

your

peace of mind. I have two with CF and after we learned more about CF I

new my

youngest had it too. At the time we were only testing my oldest because

she

had polyps in her nose and lots of sinus problems. I also have third

child

that didn't have any of the symptoms that my other to did but I wanted

to

test her just to make sure. I hope you child does not have CF but if he

does

you have every support you can need right here waiting to lend you a

shoulder

when you need it. You will love this group. Deb A

[Guest guest]

You are most welcome here anytime. I hope all is well with the results.

It is always a comfort to talk to others who have been there done

that....many have waited for the DX as you are too

Torsten was so right in asking you here. He is a big help to many .

LOVE & HUGS, grandmomBEV

Re: Hello

In a message dated 12/2/2002 9:16:04 AM Central Standard Time,

nancijk@... writes:

> Hi,

> I have been lurking for about a week or so, Torsten invited me..... I

> have a 9 month old baby (Philip) that has spent about 6 months of his

> 9 months with respertory infections and a cough that just never seems

> to go away. He had problems with his marconium as a newborn, he went

> from over 95th percentile in weight and hight to under 50 in both. If

> you kiss him, it is like kissing a salt shaker.

> I am fighting with the Dr.'s to test him for something. We have

another

> appointment tomorrow. Thank you Lord he is doing better.

> They say that it can not be CF because he is my 7th child, and since

it is

> genetic there is no way. After reading your posts I wonder about my

4th

> child. He sounds so much like some of your children.

> I wanted to let you know how much your posts have blessed me! There is

more

> wisdom and comfort on this sight, you have really put so many things

in my

> life in perspective. I have cried over the grandson and prayed for the

> sick.

> I have not posted because I do not know if Philip has CF or not and I

felt

> funny posting on the sight without knowing if I had a child with CF or

not.

>

> Have a great day!

> Nanci

Hi Nanci,

Everyone is welcome here if you have a child with CF or know of someone

with

CF or if you are concern that your child might have CF. This is a GREAT

way

to learn about CF even if you don't know for sure. I think everyone

should be

aware of CF,

Even though you child is the 7th he still could have CF. And if he is

tested

positive I strong believe you should test all of the kids just to ease

your

peace of mind. I have two with CF and after we learned more about CF I

new my

youngest had it too. At the time we were only testing my oldest because

she

had polyps in her nose and lots of sinus problems. I also have third

child

that didn't have any of the symptoms that my other to did but I wanted

to

test her just to make sure. I hope you child does not have CF but if he

does

you have every support you can need right here waiting to lend you a

shoulder

when you need it. You will love this group. Deb A

[Guest guest]

Dear Nanci,

As always great advise from Kim. The only place to get an accurate

test. and docs that can read them . Is a CF specialist. There are so

many peds docs that just want to pass it off, as Kim said, with

allergies, asthma, etc. They can deal with those Dx's but not CF.

sooooo,

Get the testing & feel better about doing all you can for a correct

DX..Then , & only then , you can start proper treatments .Love to you &

your precious family.....

LOVE & HUGS, GrdmBEV

Re: Hello

Welcome, Nanci.

I think you should buy a genetic textbook, go to your doctor's office,

and whomp him upside his fat head with it. Maybe that't the only way

to open his mind.

Before my son was 4 1/2 years old, he saw two pediatricians, an

allergy specialist and an ENT. I took him to a third pediatrician to

get a second opinion about the possibility of asthma. That doctor sent

him for an x-ray, a radiologist read it -- and still none of them ever

thought about CF.

These doctors all had 's classic textbook CF symptoms noted in

his chart, but still no one connected the dots leading to CF.

The week after the asthma diagnosis, in a series of " mini

epiphanies, " I looked in the phone book to see if there were any

organziations supporting CF. There was, so I called, and the very

helpful, warm young woman asked me all these questions -- I knew from

the questions that my son had CF.

I called the third pediatrician back and said, " I want him him tested

for CF. " The doctor was really rattled. He asked if there was a family

history (no) and he said doesn't look like kids with CF. He told

me kids with CF look like they're from Biafra. I said, " You didn't see

with his clothes off. His arms and legs have gotten very thin,

he has a pot belly, and I even asked you why he was suddenly producing

very foul smelling gas. I want him tested for CF. "

The doctor agreed, saying it was just to rule it out and put my mind

at ease. He felt sure the sweat test would be negative; I knew it

would be positive. Two days later we went for the test and got the

results that afternoon. Everyone, including 's dad, was shocked.

I was relieved to finally know I wasn't crazy... Ever since my son

was a couple weeks old, I had a feeling something was wrong, and

as he got older I felt there was something more than " Just another

respiratory virus; just another stomach virus, just another ear

infection, just another bout of bronchititis... " And the excuse I

hated most: " He'll probably grow up to be just like every other

firstborn Oklahoma son; he'll have allergies and asthma. " (He does

have allergies and asthma, but I hated that his first pediatrician

blew this off as " acceptable. " )

I was a stay-at-home mom, obsessed with proper nutrition and keeping a

very clean house. And we lived on a farm, so it's not like we had

daily contact in public places. So it just didn't make sense to me

that my baby was picking up viruses like a Hoover vacuum cleaner picks

up dust!

Demand the test; if your doctor won't authorize it, call your state CF

Foundation office to get the location of the nearest CF testing

center -- call them to make an appointment yourself.

If your doctor does agree, DON'T let him send you anywhere but a CF

Center for testing. There are some doctors that sweat test in their

office or send you to a local lab for the test, but they don't do

these tests often enough to have the expertise and the sweat test is

very sensitive.

Best of luck to you and your family. When you're up to it, I hope

you'll introduce us to your big family!

Kim

Mom to (23 with cf and asthma) and (20 asthma no cf)

Hi,

I have been lurking for about a week or so, Torsten invited me..... I

have a 9 month old baby (Philip) that has spent about 6 months of

his 9 months with respertory infections and a cough that just never

seems to go away. He had problems with his marconium as a newborn, he

went from over 95th percentile in weight and hight to under 50 in

both. If you kiss him, it is like kissing a salt shaker.

I am fighting with the Dr.'s to test him for something. We have

another appointment tomorrow. Thank you Lord he is doing better. They

say that it can not be CF because he is my 7th child, and since it is

genetic there is no way. After reading your posts I wonder about my

4th child. He sounds so much like some of your children.

I wanted to let you know how much your posts have blessed me! There

is more wisdom and comfort on this sight, you have really put so many

things in my life in perspective. I have cried over the grandson and

prayed for the sick.

I have not posted because I do not know if Philip has CF or not and

I felt funny posting on the sight without knowing if I had a child

with CF or not.

Have a great day!

Nanci

-------------------------------------------

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]

Dear Nanci,

As always great advise from Kim. The only place to get an accurate

test. and docs that can read them . Is a CF specialist. There are so

many peds docs that just want to pass it off, as Kim said, with

allergies, asthma, etc. They can deal with those Dx's but not CF.

sooooo,

Get the testing & feel better about doing all you can for a correct

DX..Then , & only then , you can start proper treatments .Love to you &

your precious family.....

LOVE & HUGS, GrdmBEV

Re: Hello

Welcome, Nanci.

I think you should buy a genetic textbook, go to your doctor's office,

and whomp him upside his fat head with it. Maybe that't the only way

to open his mind.

Before my son was 4 1/2 years old, he saw two pediatricians, an

allergy specialist and an ENT. I took him to a third pediatrician to

get a second opinion about the possibility of asthma. That doctor sent

him for an x-ray, a radiologist read it -- and still none of them ever

thought about CF.

These doctors all had 's classic textbook CF symptoms noted in

his chart, but still no one connected the dots leading to CF.

The week after the asthma diagnosis, in a series of " mini

epiphanies, " I looked in the phone book to see if there were any

organziations supporting CF. There was, so I called, and the very

helpful, warm young woman asked me all these questions -- I knew from

the questions that my son had CF.

I called the third pediatrician back and said, " I want him him tested

for CF. " The doctor was really rattled. He asked if there was a family

history (no) and he said doesn't look like kids with CF. He told

me kids with CF look like they're from Biafra. I said, " You didn't see

with his clothes off. His arms and legs have gotten very thin,

he has a pot belly, and I even asked you why he was suddenly producing

very foul smelling gas. I want him tested for CF. "

The doctor agreed, saying it was just to rule it out and put my mind

at ease. He felt sure the sweat test would be negative; I knew it

would be positive. Two days later we went for the test and got the

results that afternoon. Everyone, including 's dad, was shocked.

I was relieved to finally know I wasn't crazy... Ever since my son

was a couple weeks old, I had a feeling something was wrong, and

as he got older I felt there was something more than " Just another

respiratory virus; just another stomach virus, just another ear

infection, just another bout of bronchititis... " And the excuse I

hated most: " He'll probably grow up to be just like every other

firstborn Oklahoma son; he'll have allergies and asthma. " (He does

have allergies and asthma, but I hated that his first pediatrician

blew this off as " acceptable. " )

I was a stay-at-home mom, obsessed with proper nutrition and keeping a

very clean house. And we lived on a farm, so it's not like we had

daily contact in public places. So it just didn't make sense to me

that my baby was picking up viruses like a Hoover vacuum cleaner picks

up dust!

Demand the test; if your doctor won't authorize it, call your state CF

Foundation office to get the location of the nearest CF testing

center -- call them to make an appointment yourself.

If your doctor does agree, DON'T let him send you anywhere but a CF

Center for testing. There are some doctors that sweat test in their

office or send you to a local lab for the test, but they don't do

these tests often enough to have the expertise and the sweat test is

very sensitive.

Best of luck to you and your family. When you're up to it, I hope

you'll introduce us to your big family!

Kim

Mom to (23 with cf and asthma) and (20 asthma no cf)

Hi,

I have been lurking for about a week or so, Torsten invited me..... I

have a 9 month old baby (Philip) that has spent about 6 months of

his 9 months with respertory infections and a cough that just never

seems to go away. He had problems with his marconium as a newborn, he

went from over 95th percentile in weight and hight to under 50 in

both. If you kiss him, it is like kissing a salt shaker.

I am fighting with the Dr.'s to test him for something. We have

another appointment tomorrow. Thank you Lord he is doing better. They

say that it can not be CF because he is my 7th child, and since it is

genetic there is no way. After reading your posts I wonder about my

4th child. He sounds so much like some of your children.

I wanted to let you know how much your posts have blessed me! There

is more wisdom and comfort on this sight, you have really put so many

things in my life in perspective. I have cried over the grandson and

prayed for the sick.

I have not posted because I do not know if Philip has CF or not and

I felt funny posting on the sight without knowing if I had a child

with CF or not.

Have a great day!

Nanci

-------------------------------------------

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]

Dear Nanci,

As always great advise from Kim. The only place to get an accurate

test. and docs that can read them . Is a CF specialist. There are so

many peds docs that just want to pass it off, as Kim said, with

allergies, asthma, etc. They can deal with those Dx's but not CF.

sooooo,

Get the testing & feel better about doing all you can for a correct

DX..Then , & only then , you can start proper treatments .Love to you &

your precious family.....

LOVE & HUGS, GrdmBEV

Re: Hello

Welcome, Nanci.

I think you should buy a genetic textbook, go to your doctor's office,

and whomp him upside his fat head with it. Maybe that't the only way

to open his mind.

Before my son was 4 1/2 years old, he saw two pediatricians, an

allergy specialist and an ENT. I took him to a third pediatrician to

get a second opinion about the possibility of asthma. That doctor sent

him for an x-ray, a radiologist read it -- and still none of them ever

thought about CF.

These doctors all had 's classic textbook CF symptoms noted in

his chart, but still no one connected the dots leading to CF.

The week after the asthma diagnosis, in a series of " mini

epiphanies, " I looked in the phone book to see if there were any

organziations supporting CF. There was, so I called, and the very

helpful, warm young woman asked me all these questions -- I knew from

the questions that my son had CF.

I called the third pediatrician back and said, " I want him him tested

for CF. " The doctor was really rattled. He asked if there was a family

history (no) and he said doesn't look like kids with CF. He told

me kids with CF look like they're from Biafra. I said, " You didn't see

with his clothes off. His arms and legs have gotten very thin,

he has a pot belly, and I even asked you why he was suddenly producing

very foul smelling gas. I want him tested for CF. "

The doctor agreed, saying it was just to rule it out and put my mind

at ease. He felt sure the sweat test would be negative; I knew it

would be positive. Two days later we went for the test and got the

results that afternoon. Everyone, including 's dad, was shocked.

I was relieved to finally know I wasn't crazy... Ever since my son

was a couple weeks old, I had a feeling something was wrong, and

as he got older I felt there was something more than " Just another

respiratory virus; just another stomach virus, just another ear

infection, just another bout of bronchititis... " And the excuse I

hated most: " He'll probably grow up to be just like every other

firstborn Oklahoma son; he'll have allergies and asthma. " (He does

have allergies and asthma, but I hated that his first pediatrician

blew this off as " acceptable. " )

I was a stay-at-home mom, obsessed with proper nutrition and keeping a

very clean house. And we lived on a farm, so it's not like we had

daily contact in public places. So it just didn't make sense to me

that my baby was picking up viruses like a Hoover vacuum cleaner picks

up dust!

Demand the test; if your doctor won't authorize it, call your state CF

Foundation office to get the location of the nearest CF testing

center -- call them to make an appointment yourself.

If your doctor does agree, DON'T let him send you anywhere but a CF

Center for testing. There are some doctors that sweat test in their

office or send you to a local lab for the test, but they don't do

these tests often enough to have the expertise and the sweat test is

very sensitive.

Best of luck to you and your family. When you're up to it, I hope

you'll introduce us to your big family!

Kim

Mom to (23 with cf and asthma) and (20 asthma no cf)

Hi,

I have been lurking for about a week or so, Torsten invited me..... I

have a 9 month old baby (Philip) that has spent about 6 months of

his 9 months with respertory infections and a cough that just never

seems to go away. He had problems with his marconium as a newborn, he

went from over 95th percentile in weight and hight to under 50 in

both. If you kiss him, it is like kissing a salt shaker.

I am fighting with the Dr.'s to test him for something. We have

another appointment tomorrow. Thank you Lord he is doing better. They

say that it can not be CF because he is my 7th child, and since it is

genetic there is no way. After reading your posts I wonder about my

4th child. He sounds so much like some of your children.

I wanted to let you know how much your posts have blessed me! There

is more wisdom and comfort on this sight, you have really put so many

things in my life in perspective. I have cried over the grandson and

prayed for the sick.

I have not posted because I do not know if Philip has CF or not and

I felt funny posting on the sight without knowing if I had a child

with CF or not.

Have a great day!

Nanci

-------------------------------------------

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 Nanci,

As some of the others have said " push for the testing " My daughter

now 10 w/cf was diagnosed at 7 months. From day one I knew something

was wrong. I kept taking her to her pediatrician who told me she had

an infection in her throat but was too young for anitbiotics-then it

was that she had allergies but was too young to see an allergist-at

XMAS I brought my daughter to the local emergency room because she

was wheezing so badly and they diagnosed her with bronchiolitis but

never gave her antibiotic-she was seen by at least 4 different

doctors while in her oxygen tent and they also told me not to feed

her as they were cutting down on her amount. I didn't listen to them

about the feeding! I was breast feeding so I fed her as I normally

would THANK GOD!!! Anyway to make a long story short I finally had

had it with all these stupid drs. and called Childrens Hospital and

went to see a pulmonoligist and at the time I was ignorant about CF.

My daughter was diagnosed that day!I always wonder how much harm was

done by the dumb dr's that couldn't

figure it out and never gave her antibiotics and other meds. Oh by

the way after my daughter was diagnosed and I finally caught my

breath I called the dumb dr and reamed her-her answer was she just

can't lick every new baby she sees however they would be there for us

if we needed them. I can assure you I wouldn't take my dog to that

group of pediatricians and told them so. So hang in there and be

pushy because a mother knows her child best!!!!!!!!!!!!!!Also I have

a lot of respect for DR.'S that can say " I DON'T KNOW OR I'M NOT SURE "

J.

> Hi,

> I have been lurking for about a week or so, Torsten invited me.....

> I have a 9 month old baby (Philip) that has spent about 6 months of

his 9

> months with respertory infections and a cough that just never seems

to go

> away. He had problems with his marconium as a newborn, he went from

over

> 95th percentile in weight and hight to under 50 in both. If you

kiss him, it

> is like kissing a salt shaker.

> I am fighting with the Dr.'s to test him for something. We have

another

> appointment tomorrow. Thank you Lord he is doing better.

> They say that it can not be CF because he is my 7th child, and

since it is

> genetic there is no way. After reading your posts I wonder about my

4th

> child. He sounds so much like some of your children.

> I wanted to let you know how much your posts have blessed me! There

is more

> wisdom and comfort on this sight, you have really put so many

things in my

> life in perspective. I have cried over the grandson and prayed for

the sick.

> I have not posted because I do not know if Philip has CF or not

and I felt

> funny posting on the sight without knowing if I had a child with CF

or not.

>

> Have a great day!

> Nanci

[Guest guest]

Hi Nanci,

As some of the others have said " push for the testing " My daughter

now 10 w/cf was diagnosed at 7 months. From day one I knew something

was wrong. I kept taking her to her pediatrician who told me she had

an infection in her throat but was too young for anitbiotics-then it

was that she had allergies but was too young to see an allergist-at

XMAS I brought my daughter to the local emergency room because she

was wheezing so badly and they diagnosed her with bronchiolitis but

never gave her antibiotic-she was seen by at least 4 different

doctors while in her oxygen tent and they also told me not to feed

her as they were cutting down on her amount. I didn't listen to them

about the feeding! I was breast feeding so I fed her as I normally

would THANK GOD!!! Anyway to make a long story short I finally had

had it with all these stupid drs. and called Childrens Hospital and

went to see a pulmonoligist and at the time I was ignorant about CF.

My daughter was diagnosed that day!I always wonder how much harm was

done by the dumb dr's that couldn't

figure it out and never gave her antibiotics and other meds. Oh by

the way after my daughter was diagnosed and I finally caught my

breath I called the dumb dr and reamed her-her answer was she just

can't lick every new baby she sees however they would be there for us

if we needed them. I can assure you I wouldn't take my dog to that

group of pediatricians and told them so. So hang in there and be

pushy because a mother knows her child best!!!!!!!!!!!!!!Also I have

a lot of respect for DR.'S that can say " I DON'T KNOW OR I'M NOT SURE "

J.

> Hi,

> I have been lurking for about a week or so, Torsten invited me.....

> I have a 9 month old baby (Philip) that has spent about 6 months of

his 9

> months with respertory infections and a cough that just never seems

to go

> away. He had problems with his marconium as a newborn, he went from

over

> 95th percentile in weight and hight to under 50 in both. If you

kiss him, it

> is like kissing a salt shaker.

> I am fighting with the Dr.'s to test him for something. We have

another

> appointment tomorrow. Thank you Lord he is doing better.

> They say that it can not be CF because he is my 7th child, and

since it is

> genetic there is no way. After reading your posts I wonder about my

4th

> child. He sounds so much like some of your children.

> I wanted to let you know how much your posts have blessed me! There

is more

> wisdom and comfort on this sight, you have really put so many

things in my

> life in perspective. I have cried over the grandson and prayed for

the sick.

> I have not posted because I do not know if Philip has CF or not

and I felt

> funny posting on the sight without knowing if I had a child with CF

or not.

>

> Have a great day!

> Nanci