Re: New to this - Need advice please help.

[Guest guest]

It does sound like CF in terms of the mucus but it could be food allergies or

asthma too. Not all mutations of CF have been found yet so it could be a

possibility that it was missed in the screening. is there a family history or

did your doc just do the screening? I hope it is not CF but if it is this is

a great group to get support.

visit http://groups.msn.com/TeamJane

New to this - Need advice please help.

I want to know if this sounds like a CF child. My son Jack is

HUGE!!! He weighs 26lbs, 9 ozs and is 6 1/2 months old...so obviously

weight gain is not an issue. He was born at 37 1/2 weeks, he started

coughing shortly after birth and making excessive mucus at two weeks

old. It sort of came and went with some wheezing until 8 weeks of age

where he got progressively worse and had to go to the ER at least 3

times and on one occasion I had to call 911 because the mucus had

caused an airway obstruction and he was struggling to get air. From

about 4 weeks old he has been on Pulmicort twice a day and Albuterol

as needed (as much as every 2 hours), he has been on Prednisone 4 or

5 times. They thought it was reflux and tried Zantac and prilosec but

he doesn't have reflux, a barrium swallow confirmed that so he is off

of thoses meds. The ENT found a severe sinus infection and he was

put on antibiotics (Omnicef) for 10 days, he was still making a lot

of mucus sounds so he left him on for another 10 days and the mucus

sound went away for the first time!!!! (he was 4 months old)...after

stopping the antibiotics it came back and I insisted that they put

him back on so they put him on Augmentin for 3 weeks and the mucus,

wheezing and coughing stopped again...now he has been off of all

antibiotics for 4 weeks and the mucus, wheezing and coughing came

back....he virtually always sounds congested yet his nose is clear,

it is usually in his throat or chest. He is going for a sweat test on

MOnday....What do you think??????

I was tested when I was pregnant to see if I was a carrier and it

came out negative so how can he have it....does it sound like he has

it????? Plkease help me....

Amy

[Guest guest]

Amy,

It could just be allergies or asthma! My daughter sometimes sounds like she

is about to drown. She has allot of sinus drainage that in tern makes her

cough and causes other problems that are not cf related. She also has

asthma which runs in our family. When the weather changes her nose is the

first thing that changes too. Stay calm because you need to be calm for

your son. Babies know when you are stressed out and they then in turn

become stressed out. Address the problem when you find out what it is. If

it is CF, then you can get the necessary medications to make him feel

better. If it is not then you are a happy camper and you can address what

the problem is. Hang in there. Hope to hear from you Monday that it is as

simple as an allergy. If not, we are here for you.

Tina W mother of Steph wcf, 17yoa

Re: New to this - Need advice please help.

It does sound like CF in terms of the mucus but it could be food allergies

or asthma too. Not all mutations of CF have been found yet so it could be a

possibility that it was missed in the screening. is there a family history

or did your doc just do the screening? I hope it is not CF but if it is

this is a great group to get support.

visit http://groups.msn.com/TeamJane

<http://groups.msn.com/TeamJane>

New to this - Need advice please help.

I want to know if this sounds like a CF child. My son Jack is

HUGE!!! He weighs 26lbs, 9 ozs and is 6 1/2 months old...so obviously

weight gain is not an issue. He was born at 37 1/2 weeks, he started

coughing shortly after birth and making excessive mucus at two weeks

old. It sort of came and went with some wheezing until 8 weeks of age

where he got progressively worse and had to go to the ER at least 3

times and on one occasion I had to call 911 because the mucus had

caused an airway obstruction and he was struggling to get air. From

about 4 weeks old he has been on Pulmicort twice a day and Albuterol

as needed (as much as every 2 hours), he has been on Prednisone 4 or

5 times. They thought it was reflux and tried Zantac and prilosec but

he doesn't have reflux, a barrium swallow confirmed that so he is off

of thoses meds. The ENT found a severe sinus infection and he was

put on antibiotics (Omnicef) for 10 days, he was still making a lot

of mucus sounds so he left him on for another 10 days and the mucus

sound went away for the first time!!!! (he was 4 months old)...after

stopping the antibiotics it came back and I insisted that they put

him back on so they put him on Augmentin for 3 weeks and the mucus,

wheezing and coughing stopped again...now he has been off of all

antibiotics for 4 weeks and the mucus, wheezing and coughing came

back....he virtually always sounds congested yet his nose is clear,

it is usually in his throat or chest. He is going for a sweat test on

MOnday....What do you think??????

I was tested when I was pregnant to see if I was a carrier and it

came out negative so how can he have it....does it sound like he has

it????? Plkease help me....

Amy

[Guest guest]

Hi Amy,

Wow, you're growing a future linebacker! I'm curious how much Jack

weighed at birth. (If he was a big maybe, I hope they introduced you

to Demerol!)

You said Jack produces lots of mucus. Has anyone cultured the mucus to

see what's growing? If it's pseudomonas, that's pretty common to CF

and often cinches a diagnosis.

(Also, just an FYI but about 90% of sinus infections are fungal, not

bacterial, so be vigilent about getting a nasal culture instead of

just letting an ENT prescribe antibiotics.)

Anyway, mucus overproduction is also part of the symtomology of asthma

-- inflammation creates lots of mucus, and the constricted airways

produce that wheezing sound. You might try adjusting your son's diet

(removing some things, adding other specific things) to reduce

inflammation.

Even though you were tested to see if you're a CF carrier, prenatal

tests typically include only the most common 20 or so CF genes. There

are over 1,000 mutations of the CF gene, so unfortunately, prenatal

testing isn't fail-proof. You and Jack's daddy could still be

carriers if the test didn't include your genotype(s).

Good luck with the sweat test on Monday. It's not a painful test, but

might be scary for your little one just because he's at an age where

strangers often seem scary. I hope you'll keep us informed.

Kim

> I want to know if this sounds like a CF child. My son Jack is

> HUGE!!! He weighs 26lbs, 9 ozs and is 6 1/2 months old...so

obviously

> weight gain is not an issue. He was born at 37 1/2 weeks, he started

> coughing shortly after birth and making excessive mucus at two weeks

> old. It sort of came and went with some wheezing until 8 weeks of

age

> where he got progressively worse and had to go to the ER at least 3

> times and on one occasion I had to call 911 because the mucus had

> caused an airway obstruction and he was struggling to get air. From

> about 4 weeks old he has been on Pulmicort twice a day and Albuterol

> as needed (as much as every 2 hours), he has been on Prednisone 4 or

> 5 times. They thought it was reflux and tried Zantac and prilosec

but

> he doesn't have reflux, a barrium swallow confirmed that so he is

off

> of thoses meds. The ENT found a severe sinus infection and he was

> put on antibiotics (Omnicef) for 10 days, he was still making a lot

> of mucus sounds so he left him on for another 10 days and the mucus

> sound went away for the first time!!!! (he was 4 months

old)...after

> stopping the antibiotics it came back and I insisted that they put

> him back on so they put him on Augmentin for 3 weeks and the mucus,

> wheezing and coughing stopped again...now he has been off of all

> antibiotics for 4 weeks and the mucus, wheezing and coughing came

> back....he virtually always sounds congested yet his nose is clear,

> it is usually in his throat or chest. He is going for a sweat test

on

> MOnday....What do you think??????

> I was tested when I was pregnant to see if I was a carrier and it

> came out negative so how can he have it....does it sound like he has

> it????? Plkease help me....

>

> Amy

[Guest guest]

Welcome. Don't fear the possible cf diagnosis. CF isn't the worst

thing that could happen and once you have a diagnosis, you will know

how to treat him. I hope that you get answers soon and can get rid

of that thick mucus.

Has your doctor done xrays or a CAT scan of your son's lungs?

Please let us know the results of the sweat test.

Gale

[Guest guest]

In a message dated 8/21/2003 3:34:55 PM Central Daylight Time,

syddesi2@... writes:

> Amy

Does he have fowl smelling stools? Or does his stomach rumble all of the

time? Does he have a lot of bowl movement? Does he have a stomach that gets very

large when he eats and then when he has a bowl movement it goes down? Does his

skin taste salty? When he has a bowl movement is there a greasy film in the

stool? or float on top of the water in the stool? These are other things that

are signs of CF. We will all be thinking about you on Monday! I hope you find

out the right answer to your child's health. Deb A