Re: should oldest child get tested - Christal [long]

[Guest guest]

Hi Christal,

I'm sorry my reply is so late. I wanted to make

sure that I don't repeat what others have said,

so I went back through the replies to see what the

others wrote.

They were all very good responses, but I'd like

to add a few points about this testing issue.

* 1 in 25 caucasions have a cf mutation, so dismissing

your son out-of-hand as being unlikely to have cf

simply because he is from your first marriage, is

not a very good reason.

* Should your first husband be a carrier, there is a

one in four chance that your son has cf, and an

equal chance that he is a carrier. The good news

is that there is a 50% chance that he neither has

cf nor is a cf carrier. So his pediatrician's

comment that he is " likely " to be a carrier is not

necessarily true. If your husband is not a carrier,

the chances of your son being a carrier drops to

only 25%, so his comment would be even less likely.

* Since you know you are a carrier, it is a good idea

to get your oldest son tested. The question is " how? "

Does he get a sweat test? This only tells you if he

has cf or not. If he doesn't, it doesn't tell you

if he is a carrier, which could be important if he

ever gets married and wishes to start a family. Do

you know your mutation? If you carry one of the

unknown mutations, then obviously the blood test

won't reveal his carrier status anyway, and then

a sweat test would be best just to rule out cf

altogether.

So, my long-winded advice is:

If you know your mutation, have him get the blood

test to find out whether he carries that mutation,

and possibly another, which would tell you if he

had cf, or was likely only a carrier. If he tests

as only a carrier here, I probably would not go

further with a sweat test unless he appears to have

symptoms beyond carrier type symptoms, like sinus

problems.

If you don't know your mutation, have him sweat tested

to rule it out altogether. Unfortunately, there is

a small percentage that don't test positive in a sweat

test, but do actually have cf, as some on this list

will tell you, but it is a fairly reliable test as

long as no other major symptoms of cf appear.

Good luck!

C

Mommy to Mick and Alli, 3 yo twins wcf

--- cgrldreams wrote:

> I just thought I would through this out and get a

> general

> consensus. My oldest son, Tristan 6yo, is from my

> first marriage so

> he and his little brother, Zack (2wcf) have

> different fathers. When

> Zack tested pos. 2 weeks ago the CF dr.said that my

> other children

> should be tested including my oldest. I informed

> them that he has a

> different father and they still said he should be.

> His father just

> informed me that his pediatrician said that he

> should not be tested

> because he has a different dad. (oh yeah he lives

> with his dad in a

> different state). and that he is PROBABLY a carrier.

> My question is

> this- should I push for him to get tested? He has

> not had many

> symptoms of CF, he gets a lot of respritory

> infection but other than

> that he is a normal 6yo. What do ya'll think?

>

> Christal

> mom of Tristan 6ncf, Zack 2wcf, Ki'a 4monthscf?

>

> Oh yeah keep your fingers crossed Ki'a gets tested

> tuesday (11th).

>

>