What does this mean???

[chipper28]

Thought I'd add, I'd push for not only a cf genetic test, but one that checks for all known mutations versus a panel. There's good medical justification for this, with the link between borderline sweat levels and having even more rare mutations.

Also, there is no reason to wait three months on a sweat test. They can in fact do it the next day and I even think i've heard of people having both the same day. When I first read the post, i missed your childs age and i thought perhaps you had an infant and they were wanting to wait and see if the sweat level increased with age, but at 5 that really doesn't make sense.

With a 51, the doctor should be even more concerned than he was when he raised the issue of testing. However, many pediatricians and general practitioner types really don't understand the testing. If you don't get the response from him that you think is appropriate to protect your daughters health, I'd consider contacting either the CF clinic in your area (or the closest) or a pediatric pulmonologist who might be better able to help yall figure everything out.

Best of luck!

 

[Jackie]

Well, we still have not heard back. We just had him paged again
this morning. So hopefully we here back soon. I think its
ridiculous that you have to push to get things done.  We live
in Canada BC. It can take forever to get things going here.

 

[Jackie]

Well, we still have not heard back. We just had him paged again
this morning. So hopefully we here back soon. I think its
ridiculous that you have to push to get things done.  We live
in Canada BC. It can take forever to get things going here.

 

[Jackie]

Well, we still have not heard back. We just had him paged again
this morning. So hopefully we here back soon. I think its
ridiculous that you have to push to get things done.  We live
in Canada BC. It can take forever to get things going here.

 

[Jackie]

We heard back from him and he said that the sweat test she had done
is different then what I'm looking at on the net. He said the kids
that test positive for cf  have a score of like 300. So he is
saying that 51 is only like 1 over the normal range. He said he
wants to wait 3 months to see how her health is and everything else
but if its bothering me that bad then he said wait a couple weeks
and we will test her again and if the test came back the same then
we would have to be sent to Vancouver for a definite test. But he
said he thinks to go right now would be a waste of time. He said he
has never seen a kid who scored 50 to 100 test positive for cf.<br>
<br>
So I guess its different at this hospital?

 

[Jackie]

We heard back from him and he said that the sweat test she had done
is different then what I'm looking at on the net. He said the kids
that test positive for cf  have a score of like 300. So he is
saying that 51 is only like 1 over the normal range. He said he
wants to wait 3 months to see how her health is and everything else
but if its bothering me that bad then he said wait a couple weeks
and we will test her again and if the test came back the same then
we would have to be sent to Vancouver for a definite test. But he
said he thinks to go right now would be a waste of time. He said he
has never seen a kid who scored 50 to 100 test positive for cf.<br>
<br>
So I guess its different at this hospital?

 

[Jackie]

We heard back from him and he said that the sweat test she had done
is different then what I'm looking at on the net. He said the kids
that test positive for cf  have a score of like 300. So he is
saying that 51 is only like 1 over the normal range. He said he
wants to wait 3 months to see how her health is and everything else
but if its bothering me that bad then he said wait a couple weeks
and we will test her again and if the test came back the same then
we would have to be sent to Vancouver for a definite test. But he
said he thinks to go right now would be a waste of time. He said he
has never seen a kid who scored 50 to 100 test positive for cf.<br>
<br>
So I guess its different at this hospital?

 

[Chaggie]

I've never heard of ant other sweat test, i'd be interested to know more about it. Also just because she tests negative on a sweat test doesn't mean she is clear. What are her other symptoms?

 

[Chaggie]

I've never heard of ant other sweat test, i'd be interested to know more about it. Also just because she tests negative on a sweat test doesn't mean she is clear. What are her other symptoms?

 

[Chaggie]

I've never heard of ant other sweat test, i'd be interested to know more about it. Also just because she tests negative on a sweat test doesn't mean she is clear. What are her other symptoms?

 

[DEES4]

I also have never heard of a different kind of sweat test....do you know if it has a different name? When she was tested the first time what exactly did they do to perform the sweat test? And what kind of doctor is she seeing.....just wondering if he is a pulmonologist?

 

[DEES4]

I also have never heard of a different kind of sweat test....do you know if it has a different name? When she was tested the first time what exactly did they do to perform the sweat test? And what kind of doctor is she seeing.....just wondering if he is a pulmonologist?

 

[DEES4]

I also have never heard of a different kind of sweat test....do you know if it has a different name? When she was tested the first time what exactly did they do to perform the sweat test? And what kind of doctor is she seeing.....just wondering if he is a pulmonologist?

 

[ktsmom]

I agree with Chaggie and Chipper 28.

And, for your doc to suggest you wait three months is CRAZY. There is NO way. Insist on a "real" sweat test or bloodwork as soon as you can.

We got two positive sweat tests on a Thursday and then were told to disregard those because where we had them done "didn't do them as often as this other place" and so we had to wait until Monday for it to be done at "the other place".

That was the longest weekend of my life. Don't put yourself through that. And good luck!

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

I agree with Chaggie and Chipper 28.

And, for your doc to suggest you wait three months is CRAZY. There is NO way. Insist on a "real" sweat test or bloodwork as soon as you can.

We got two positive sweat tests on a Thursday and then were told to disregard those because where we had them done "didn't do them as often as this other place" and so we had to wait until Monday for it to be done at "the other place".

That was the longest weekend of my life. Don't put yourself through that. And good luck!

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

I agree with Chaggie and Chipper 28.

And, for your doc to suggest you wait three months is CRAZY. There is NO way. Insist on a "real" sweat test or bloodwork as soon as you can.

We got two positive sweat tests on a Thursday and then were told to disregard those because where we had them done "didn't do them as often as this other place" and so we had to wait until Monday for it to be done at "the other place".

That was the longest weekend of my life. Don't put yourself through that. And good luck!

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[Jackie]

It was called a sweat chloride. They put the bands on her arms that
had these caps or something on them and turned on the machine for 5
mins or so then I think they put jelly on her arm and put a screen
disk thing on her arm to collect the sweat and wrapped her
arm and we waited for like 30 mins or so then had the disk
sent to the lab. He said the tests they do at the actual children s
hospitals have different scores then this one. He said what I am
reading on the net like 40 being normal, 40-60 borderline and so on
were tests that were preformed at the children s hospital but the
51 she got done here is according to him nothing to worry about.

 

[Jackie]

It was called a sweat chloride. They put the bands on her arms that
had these caps or something on them and turned on the machine for 5
mins or so then I think they put jelly on her arm and put a screen
disk thing on her arm to collect the sweat and wrapped her
arm and we waited for like 30 mins or so then had the disk
sent to the lab. He said the tests they do at the actual children s
hospitals have different scores then this one. He said what I am
reading on the net like 40 being normal, 40-60 borderline and so on
were tests that were preformed at the children s hospital but the
51 she got done here is according to him nothing to worry about.

 

[Jackie]

It was called a sweat chloride. They put the bands on her arms that
had these caps or something on them and turned on the machine for 5
mins or so then I think they put jelly on her arm and put a screen
disk thing on her arm to collect the sweat and wrapped her
arm and we waited for like 30 mins or so then had the disk
sent to the lab. He said the tests they do at the actual children s
hospitals have different scores then this one. He said what I am
reading on the net like 40 being normal, 40-60 borderline and so on
were tests that were preformed at the children s hospital but the
51 she got done here is according to him nothing to worry about.

 

[Jackie]

I forgot to add that its a pediatrician who i am seeing