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Re: retesting sibling??

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In a message dated 2/17/2003 1:19:54 PM Eastern Standard Time,

johndawn@... writes:

> Why not have them both gentically tested? It would give you peace of mind.

> If the doctor wants to know why you want your son tested you can truthfully

> say it is to know if he is a carrier of not. Every one should know that.

> :-)

>

I AGREE....you need peace of mind! Do it asap.....

Rosemary from New York with 3 children with CF -

they are 12.5, 10, 6......

I coined the phrase " BREATHE DAMMIT " ; we have a dog we named -are you ready

for this - TOBI after their medication!!! At least it wasn't albuterol or

Coly...

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Hi ,

Welcome to the list. I have an Emma as well. She was diagnosed through

testing done at birth for all children born at that hospital. Our Emma's

test came back over 100 and our other daughter Isabelle was below 10.

Nevertheless, she had a number of signs that were indicative of CF ... so

many that even before Emma was born and I had any idea of what CF was, I

had looked up Isabelle's symptoms and they seemed to be indicative of CF.

When Emma was diagnosed, I was so sure that Isabelle had it as well.

The sweat test did nothing to relieve my stress over it. She just had to

many stool problems and a few lung issues as well (bronchilitis at the

age of seven months that left her wheezing for months afterwards). I

explained my anxiety to her doctor and told her that I know what the

sweat test indicates but for my piece of mind, I need her to have a DNA

test as well. They did it that day and it indicated that she was a

carrier. Emma had a DNA test at birth and is double delta F508 so it

seems that Isabelle doesn't have CF. If I were you, I would push for the

DNA test. You have one kid with CF to worry about already, you don't

want to always be thinking what if ... It may just give you piece of

mind or it may actually diagnose CF. Piece of mind would be great but if

he has CF, it is best to find out now. I credit Emma's lungs doing well

so far to her early diagnosis. The sooner you know for sure, the better

his health will be long term. Good Luck. The constant worrying is so

hard.

- mom to the butterfly girls Emma 2 1/2 years w/cf , reflux and

major attitude (what two year old doesn't) and Isabelle 4 years wo/cf

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In a message dated 2/17/03 12:41:08 PM Eastern Standard Time,

juliewilkins2001@... writes:

> I've heard that a carrier can have some of the

> symptoms, but can't find this in writing. I'm

> wondering if any of you out there have similar

> experiences. Please tell me like it is. I'm worried

> & want to know. In the meantime, I'm anxiously

> awaiting the results of a sinus CT scan to see if he

> needs sinus surgery. Should I push. . .or just quit

> worrying?

>

>

WOW sounds just like my situation. 9 w/cf and 12

w/asthma and supposedly a cf carrier. But with so many symptoms I too want

to repeat the sweat test....the first one being in the 30's. He had DNA

linkage that told us he is a carrier, but the test is 98% accurate.....so

there's the 2%.....thats enough for me.

- Sally -

Mom of

Bri 14 JV All star amazing best cheerleader

12w/asthma

9w/cf & ds

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