Re: my twin born with nasal polyp

[Guest guest]

In a message dated 7/23/2003 2:17:39 AM Central Daylight Time,

isugargirll@... writes:

> Krista

Well, I can't help you with infancy diagnoses because my girls were 6 and 1

when they were diagnosed. But the way my oldest was diagnosed was because of

polyps and I still feel to this day if she didn't have them I think our

Pediatrician would of not figured out that our girls have CF. When they did

find them

they assured us that she just had allergies but I knew in my heart it was CF

because of the stools being foal smelling the pop belly, and the cough that

never seem to go away for a long period of time. I would get a sweat test done

our a DNA that way you will know for sure. Deb A

[Guest guest]

There can be many other reasons for nasal polyps. My mom has had several,

and she does not have CF. To ease your mind, ask for a CF test. Is he

growing well? Is he having any other problems besides the polyps?

Best of luck to you both!

my twin born with nasal polyp

> Please please someone hear my post. i am about to take my 10 week old

> to an ent dr., but every second until then is filled with anxiety. He

> was the smaller of the two, 5# born with a recognizable polyp in one

> nostril and a less clear one (i assume) in the other. I haven't

> addressed these concernns with anyone in my life yet, I'm hoping it

> could be something else, other than cf. Could it be? Why hasn't

> anyone expressed the possibility of somethinng more serious than an

> extra piece of skin we need to excise. Not even in the hosptal was

> concern shown or was ?I educated to the possibilities. comments

> please. Krista please share experiences with cf in infancy;

> diagnosis and such.

>

>

>

>

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

> 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]

Krista

Please push your docs to dna test your child for cf. My son was not

diagnosed until he was 13 months old and it was a long difficult

first year for him. We had the same experience with the medical

community that you are having. No one took our concerns seriously

about Zach having cf until I demanded a dna test at his 12 month

check up. The pediatrician said she could tell by looking at him

that he did not have cf. WRONG!

Do not let the docs try to talk you out of it by saying it does not

run in your family. We have no one else in our family with cf.

There is reason to believe that your child may not have cf and to

keep hoping for a diagnosis other than cf. A dna test is 90%

conclusive and it only takes one blood test.

I hope for the best for you and your baby.

Let us know how it goes.

Sara - mommy to Zach 17 months wcf

-- In cfparents , " isugargirll " <isugargirll@y...>

wrote:

> Please please someone hear my post. i am about to take my 10 week

old

> to an ent dr., but every second until then is filled with

anxiety. He

> was the smaller of the two, 5# born with a recognizable polyp in

one

> nostril and a less clear one (i assume) in the other. I haven't

> addressed these concernns with anyone in my life yet, I'm hoping it

> could be something else, other than cf. Could it be? Why hasn't

> anyone expressed the possibility of somethinng more serious than an

> extra piece of skin we need to excise. Not even in the hosptal was

> concern shown or was ?I educated to the possibilities. comments

> please. Krista please share experiences with cf in infancy;

> diagnosis and such.

[Guest guest]

Krista

From someone who has had a Pediatrician who wouldn,t listen to her

concerns - If you are uncomfortable with his diagnosis or he patronizes you and

tells you not to worry you might want to change Ped,s. We had a Ped for 5

years(changed right before my youngest was born, Thankfully) He missed a HOLE

in

my friends daughters heart - They went to see someone else because they couldnt

get appointments any way the FIRST visit with new doc he heard hole in heart

that was quite large. Thankfully everything is ok and surgery corrected it but

the alternatives are unthinkable. My sis in law also changed then and her

daughters " lazy eye " which was supposed to be nothing to worry about(he said) is

now requiring an operation and she will NEVER have full vision in that eye.

sorry to get on my soap box - but - the moral of the story is dont wait til

its too late if your docs dont listen to your fears. YOU are the one who is

with them every day and you know what is going on either dont take no for an

answer or get another doc who will listen.

Marie, forceful mom of 3 youngest wcf

[Guest guest]

Marie,

I so agree with you! If one doctor doesn't listen to your questions

and concerns, *never* feel like you're being paranoid. Instead, get a

second opinion -- and a third and fourth if necessary!

By the time my son was 4 years old, he'd seen two pediatricians, an

ENT (to put tubes in his ears at 10 months), and a pediatric

allergist. But still no answers. I finally took him to a third

pediatrician who was out of med school barely 3 months. That doctor

sent my son for a chest x-ray and tenatively -- based on the

radiologist's suggestion and my concerns -- diagnosed asthma. The

following week after doing more homework, I called that ped back and

requested a sweat test for CF.

The ped was flabbergasted. He asked if we have a family history (of

course not), and said kids with cf look like they're from Biafra; he

pointed out my son didn't look like that. And I pointed out that he

didn't see my son with his shirt off and I then listed all the classic

textbook symptoms. He agreed to test him just to allay my

concerns.

Three days later we went for the sweat test and got the results that

afternoon. I called the pediatrician at home (it was his day off) to

break the news to him. Later, I found out from his wife that when

he got off the phone with me, he closed the den door, cried and

prayed for my son.

The rest of the office staff quickly learned the news and were

stunned -- everyone, including my son's father, expected a negative

test. I was the only one who expected it would be positive.

From then on, both my children got VIP treatment. I was actually

stunned how everyone rose to the occasion of their profession. I'd

call the ped's office and say, " This is Kim Payne, 's mom... " and

within minutes (yes, minutes!) one of the peds would be on the phone,

not a nurse, but the doctor himself. In the beginning, I felt a bit

uncomfortable when they'd consult with ME about which antibiotic I

wanted. Then I decided maybe this was how it's supposed to be, maybe

I'm supposed to be up-to-date on all this stuff so I when doctors have

to present info they don't feel like they're explaining things to an

idiot. So I just started reading more and more, and realized that I

felt more calm, better prepared for emergenicies, and more confident

to make decisions with my son's doctors.

I think when you have doctors that treat you as part of the team it

raises your expectations and level of acceptance. I learned that the

parents and patient are crucial members of the decision-making team,

and that's why you have to be informed. Don't ever let someone pat you

on the head and say, " This is what we're gonna do. " If you don't

understand something, you should feel comfortable and free to ask --

tell them to do whatever they have to do to explain something to you,

whether it's drawing a diagram or giving you brochures or even

providing an interpretor, if necessary.

One thing we all forget is that doctors are *not* gods and they are

*not* above making mistakes. We all know this and we've all probably

caught a doctor's mistake at least once.

You've heard my story before about the ER doctor who felt the bump on

my daughter's head and was going to dismiss her without even reading

her chart or looking into her eyes or ears or ordering an x-ray -- but

I stopped him before he left the room. I knew she had a skull fracture

just from her symptoms! After he looked in her left ear and saw blood

pooled behind the ear drum, then orded a CT scan that showed blood and

air around the brain -- I'm sure the stupid doctor had visions of

losing his license flash before his eyes.

CF is so tricky! Some cases are diagnosed by a sweat test, some not.

Some are diagnosed with a gene test, but some not. I know one adult

with CF whose has genes only common to French Canadians. She has

positive sweat tests, and her genes are identified only by Genetech's

tests, but not by Ambry's tests or anyone else.

So never keep searching for answers. It took four years and four

months for someone to finally listen to me. My son tasted salty at 4

weeks, but never tasted salty again until that very day I picked up

the phone to ask the third ped to order a test for CF.

Kim

Mom to (24 with cf and asthma) and (20 1/2 asthma no cf)

From someone who has had a Pediatrician who wouldn,t listen

to her concerns - If you are uncomfortable with his diagnosis or he

patronizes you and tells you not to worry you might want to change

Ped,s. We had a Ped for 5 years(changed right before my youngest was

born, Thankfully) He missed a HOLE in my friends daughters heart -

They went to see someone else because they couldnt get appointments

any way the FIRST visit with new doc he heard hole in heart that was

quite large. Thankfully everything is ok and surgery corrected it but

the alternatives are unthinkable. My sis in law also changed then

and her daughters " lazy eye " which was supposed to be nothing to worry

about(he said) is now requiring an operation and she will NEVER have

full vision in that eye. sorry to get on my soap box - but - the moral

of the story is dont wait til its too late if your docs dont listen to

your fears. YOU are the one who is with them every day and you know

what is going on either dont take no for an answer or get another doc

who will listen.

Marie, forceful mom of 3 youngest wcf

[Guest guest]

Hi,

I hope this post isn't too late to be useful, but

you didn't mention whether your twins were identical

or not.

I just wanted to point out that whatever test you

and your doctors decide on, if the twins are identical

there is no need to put them both through the tests.

They'll have the same genes so only one of the twins

need to endure a heel prick or sweat test.

If they are fraternal, like my son and daughter, they

will both need the test, obviously. I just thought I'd

mention this since not everyone thinks of these things

and it could save you (or your insurance) some money

and one of your babies some discomfort if they are

identical.

Good luck!

C

Mommy to Mick and Alli, 3 yo twins wcf