Re: Were any of your babies above average in weight???

August 22, 2003

Cody was actually pretty big when he was born--just over 3 weeks early, and

he weighed 7 lbs 5 oz, but would have been more if he'd had all of his blood

(he was born with only 1/2 the blood volume he should have had, so had

several transfusions). After that, though, he didn't grow much and had

failure to thrive. BUT, not all CF patients have pancreatic insufficiency,

so he may grow fine for quite some time, and may develop the insufficiency

later on.

Does his skin taste salty? Cody is so salty that even his hands are

salty--he will pick up a grape and hold it for a few seconds then change his

mind and set it down, and I made the mistake a few times of picking it up

and eating it, and it was like salt had been dumped on it--EEEEYUK!! But, I

got used to it, and it doesn't bother me anymore--kind of developed a

" taste " for salty grapes! LOL

I want to wish you the best of luck on Monday, and look forward to hearing

the results!

S., mom to Cody (7, pwcf, nissen for severe reflux, malnutrition,

ADHD), DJ (9, nocf, asthma, ADD), and a (14, nocf, ADHD)

Were any of your babies above average in weight???

> I keep going over and over all of Jack's symptoms and I keep reading

> all of the posts and it seems like " most " of your babies were small

> and underweight. My son is SO big. He is off the charts big. He is

> almost the size of a large 2 year old and he is only 6 months old.

> Were any of the other babies on this group large? My son also always

> has alot of mucus in his throat and chest but he doesn't run fevers

> or anything. I am just rambling now because I am still trying to find

> some " proof " that my baby doesn't have this before the sweat test on

> Monday just to put my mind at ease.

> Is it common for babies to just have mucus? The mucus and wheezing

> usually stay even with steroids and albuterol but respond to

> antibiotics, is that a bad sign?

>

> Please give me your honest opinion.

>

> Thank you

> Amy

August 22, 2003

Hi Amy,

I'm , a's mom, she was the chubbiest child and she did not

have any other sign other than a lot of mucus in his nose, meaning a

constant runny nose, never sick, until 2 years ago when she had a

case of pneumonia that would not go away. When she was 5 months old

I got a really bad cold and she got it, it turned into broncholitis,

but she responded really well to antibiotics. Then when she was 2

she had a touch of pneumonia and again, antibiotics did the trick.

But other than that she was always on the chubby side 90 percentile

on the charts and very healthy.

I know what you are going thru, when the radiologist told me this

looks like CF, small damage to her lungs showed on the x-ray, I

started to look on the internet for tell tail signs, of course there

were none, a is not classic.

Hopefuly you will find out Monday one way or another, but I am going

to tell you with my heart, the best thing that happen to us, was we

had a diagnosis. Now, we could make her feel better, the pneumonia

was gone and her runny nose is gone.

I wish you luck,

mom of a 10 wcf, Venanzio 7 nocf, Pepe 3 nocf

> I keep going over and over all of Jack's symptoms and I keep

reading

> all of the posts and it seems like " most " of your babies were small

> and underweight. My son is SO big. He is off the charts big. He

is

> almost the size of a large 2 year old and he is only 6 months old.

> Were any of the other babies on this group large? My son also

always

> has alot of mucus in his throat and chest but he doesn't run fevers

> or anything. I am just rambling now because I am still trying to

find

> some " proof " that my baby doesn't have this before the sweat test

on

> Monday just to put my mind at ease.

> Is it common for babies to just have mucus? The mucus and wheezing

> usually stay even with steroids and albuterol but respond to

> antibiotics, is that a bad sign?

>

> Please give me your honest opinion.

>

> Thank you

> Amy

August 22, 2003

was 8 lb 6 oz at birth - a full pound and an ounce more than my

daughter without CF. He did get down to " tiny " when he was diagnosed -

about 16 lb at 10 months of age. Now he is a strapping 39 inches and 33

pounds....83rd percentile for height!

It's hard to wait, isn't it? Your mind goes crazy with the

possibilities. I was pretty much in denial even though I asked for the

sweat test, and somehow just put it out of my mind till that morning. I

think I " knew " on some level, as I remember feeling this deep sense of

dread and fear, and there was a woman handing out teddy bears, I'll

never forget it, she had big ones and small ones, the big ones were a

" normal " teddy bear look but the small ones looked odd, just sort of

" off " in shape, not like a teddy bear " should " look. Anyway, since

was smaller she handed us a small one - I remember wanting him to have a

big one and being vaguely angry at her, and then realizing that somehow

being given this bear was a sign that he was now a " sick child. " Anyway,

it's a weird memory - I kept the bear until recently, in the closet with

other stuffed animals, and finally threw it out, as it brings back that

awful memory and nothing good.

In any case...the waiting game sucks. I'm sorry. My honest opinion is -

I don't know. Many with CF present in different ways. Some are big, some

small, some need enzymes, some don't. Some have lung problems, some

don't...Some have lots of mucus, some don't...

I wish you luck and a negative sweat test. But, if it's positive, we're

here for you.

)O(

mama to , 2yo, w/CF, and , 4yo, no CF

Were any of your babies above average in weight???

I keep going over and over all of Jack's symptoms and I keep reading

all of the posts and it seems like " most " of your babies were small

and underweight. My son is SO big. He is off the charts big. He is

almost the size of a large 2 year old and he is only 6 months old.

Were any of the other babies on this group large? My son also always

has alot of mucus in his throat and chest but he doesn't run fevers

or anything. I am just rambling now because I am still trying to find

some " proof " that my baby doesn't have this before the sweat test on

Monday just to put my mind at ease.

Is it common for babies to just have mucus? The mucus and wheezing

usually stay even with steroids and albuterol but respond to

antibiotics, is that a bad sign?

Please give me your honest opinion.

Thank you

Amy

August 22, 2003

Amy,

My daughter was average size until she was about 7 months old. then she started

to loose weight because she became pancreatic insufficient. Many people are

pancreatic sufficient and still have CF. It is just much more common to be

pancreatic insufficient, that is why they have the digestive issues. There is a

woman on another list who was diagnosed at age 53 or 54. They never suspected

that she had CF because she was OVERWEIGHT, not underweight at all. However she

had all the respiratory issues of a person with CF from the time she was a

little girl. I don't know what to tell you. Has he been tested for allergies?

My anaphylactic nephew is always mucusy too, but he is just allergic to

everything imaginable, he doesn't have CF. I hope that is all it is.