Re: I'm back....more questions

April 29, 2003

In a message dated 4/29/2003 1:36:19 AM Central Daylight Time,

bethmcd70@... writes:

> Ok, I have some questions about testing and such. My nephew (10

> months old) had a sweat test and they said it was negative, but they

> weren't completly sure. At least that's what his mother told me.

> She said the next appointment for him isn't until May 28th and they

> are going to do more tests. Why would they wait that long? I mean

> how hard it is to draw some bloods and do the DNA test? At least if

> they did that now, by May 28th they might have some results! This

> all may be a non issue anyway because my husband and I might be

> getting custody of our nephew anyway. And believe me, if he comes to

> us the first thing I'll be doing is getting him to a CF specialist

> and getting the damn DNA test. Enough with this already. We need to

> know if he has it or not so we can move to the next step.

>

> Anyway, just wanted to know if anyone had any thoughts or ideas for

> me. Thanks,

>

> -Beth

There is know reason why they could do a DNA test. It is so easy to do!! And

you are right by the time May 28 would come around you would have the results

it takes and where from 2 to 4 weeks to get results. Good luck!! Deb A

April 29, 2003

with the sweat test, anything below 40 is normal, anything above 60 is

considered positive for CF. So, Maybe his test is between 40 and 60 and

considered borderline. Usually they do the sweat test again before they do any

other tests. I don't know why they would wait to draw blood to do a DNA test.

Is he being seen by a CF clinic and was he tested at a CF center? If you do get

custody, as a guardian you should be able to find out why they are waiting on

all this. Could it be your sister not insisting on it being done right away or

putting it off? I hope not but if he is being seen by a CF center they are

usually pretty anxious to get a diagnosis too, so they can begin to treat the

child.

I'm back....more questions

Ok, I have some questions about testing and such. My nephew (10

months old) had a sweat test and they said it was negative, but they

weren't completly sure. At least that's what his mother told me.

She said the next appointment for him isn't until May 28th and they

are going to do more tests. Why would they wait that long? I mean

how hard it is to draw some bloods and do the DNA test? At least if

they did that now, by May 28th they might have some results! This

all may be a non issue anyway because my husband and I might be

getting custody of our nephew anyway. And believe me, if he comes to

us the first thing I'll be doing is getting him to a CF specialist

and getting the damn DNA test. Enough with this already. We need to

know if he has it or not so we can move to the next step.

Anyway, just wanted to know if anyone had any thoughts or ideas for

me. Thanks,

-Beth

April 29, 2003

Unfortunately I don't know what the number actually was for the sweat

test. I do believe that is somehow (even unconsiously?)

delaying these tests and such. I am almost positive that he has only

been to a pediatric pulmonologist. Not a CF specialist and not at a

CF clinic. She has been taking him to somewhere in Syracuse (NY),

I'm guessing a big hospital there. She isn't very telling with

actual details and such.

We are waiting to find out if we may get custody of him because she

is being investigated by CPS for various reasons, medical neglect is

in that list of reasons. We are keeping our fingers crossed. Even

the child's father wants us to have custody (he is my husbands

brother), because he knows she is not caring for him correctly and he

unfortuntely doesn't have the resources to take care of the child

either.

Hopefully by the end of the week I'll know something. Does anyone

know of a CF clinic in NY? We are 90 miles west of NYC. Any info

would be great.

-Beth

> with the sweat test, anything below 40 is normal, anything above 60

is considered positive for CF. So, Maybe his test is between 40 and

60 and considered borderline. Usually they do the sweat test again

before they do any other tests. I don't know why they would wait to

draw blood to do a DNA test. Is he being seen by a CF clinic and was

he tested at a CF center? If you do get custody, as a guardian you

should be able to find out why they are waiting on all this. Could it

be your sister not insisting on it being done right away or putting

it off? I hope not but if he is being seen by a CF center they are

usually pretty anxious to get a diagnosis too, so they can begin to

treat the child.

>

> I'm back....more questions

>

> Ok, I have some questions about testing and such. My nephew (10

> months old) had a sweat test and they said it was negative, but

they

> weren't completly sure. At least that's what his mother told

me.

> She said the next appointment for him isn't until May 28th and

they

> are going to do more tests. Why would they wait that long? I

mean

> how hard it is to draw some bloods and do the DNA test? At least

if

> they did that now, by May 28th they might have some results!

This

> all may be a non issue anyway because my husband and I might be

> getting custody of our nephew anyway. And believe me, if he comes

to

> us the first thing I'll be doing is getting him to a CF

specialist

> and getting the damn DNA test. Enough with this already. We

need to

> know if he has it or not so we can move to the next step.

>

> Anyway, just wanted to know if anyone had any thoughts or ideas

for

> me. Thanks,

>

> -Beth

>

April 30, 2003

There are more than one cf clinic in NY .I take my kids to SUNY Health and

science center in Syracuse the head doctor is Dr. Swender he only sees new

patients and a few older ones.Dr.Anbar is the usual doctor for pediatric

pulmonology.This is the clinic we have used for 19 years and they are

aggresive at cf treatment.BeckyB.

April 30, 2003

My very special thoughts & good wishes are out there for you in all these

situations & what is best for this precious wee one

LOVE & HUGS,

grandmomBEV