Going Stir Crazy!

F

F8AW8SU2

New member
Hi all,
I posted earlier this week about my son and possible CF. We got into the Children's hospital rather quickly and they did a third sweat test on him Tuesday morning. The tech assured me the results would be done by that afternoon. I have been blowing up the phones at my peds office for an answer!

I was told that there are no results, but then the nurse said something to the effect of "there is something in the system, but it has to be reviewed and dictated for the final report". What the Hell does that mean??? I have been told to be patient and that I might not get a result until Monday.

The test that was done at Baptist was reported to me the same day, what is the hold up on this?? I know ya'll don't have the answers, I'm just venting a bit. I hope to hear something tomorrow because this is really weighing on my mind.

Thank you all for the support you provide and hugs to everyone.

Dori
 
F

F8AW8SU2

New member
Hi all,
I posted earlier this week about my son and possible CF. We got into the Children's hospital rather quickly and they did a third sweat test on him Tuesday morning. The tech assured me the results would be done by that afternoon. I have been blowing up the phones at my peds office for an answer!

I was told that there are no results, but then the nurse said something to the effect of "there is something in the system, but it has to be reviewed and dictated for the final report". What the Hell does that mean??? I have been told to be patient and that I might not get a result until Monday.

The test that was done at Baptist was reported to me the same day, what is the hold up on this?? I know ya'll don't have the answers, I'm just venting a bit. I hope to hear something tomorrow because this is really weighing on my mind.

Thank you all for the support you provide and hugs to everyone.

Dori
 
F

F8AW8SU2

New member
Hi all,
I posted earlier this week about my son and possible CF. We got into the Children's hospital rather quickly and they did a third sweat test on him Tuesday morning. The tech assured me the results would be done by that afternoon. I have been blowing up the phones at my peds office for an answer!

I was told that there are no results, but then the nurse said something to the effect of "there is something in the system, but it has to be reviewed and dictated for the final report". What the Hell does that mean??? I have been told to be patient and that I might not get a result until Monday.

The test that was done at Baptist was reported to me the same day, what is the hold up on this?? I know ya'll don't have the answers, I'm just venting a bit. I hope to hear something tomorrow because this is really weighing on my mind.

Thank you all for the support you provide and hugs to everyone.

Dori
 
F

F8AW8SU2

New member
Hi all,
I posted earlier this week about my son and possible CF. We got into the Children's hospital rather quickly and they did a third sweat test on him Tuesday morning. The tech assured me the results would be done by that afternoon. I have been blowing up the phones at my peds office for an answer!

I was told that there are no results, but then the nurse said something to the effect of "there is something in the system, but it has to be reviewed and dictated for the final report". What the Hell does that mean??? I have been told to be patient and that I might not get a result until Monday.

The test that was done at Baptist was reported to me the same day, what is the hold up on this?? I know ya'll don't have the answers, I'm just venting a bit. I hope to hear something tomorrow because this is really weighing on my mind.

Thank you all for the support you provide and hugs to everyone.

Dori
 
F

F8AW8SU2

New member
Hi all,
I posted earlier this week about my son and possible CF. We got into the Children's hospital rather quickly and they did a third sweat test on him Tuesday morning. The tech assured me the results would be done by that afternoon. I have been blowing up the phones at my peds office for an answer!

I was told that there are no results, but then the nurse said something to the effect of "there is something in the system, but it has to be reviewed and dictated for the final report". What the Hell does that mean??? I have been told to be patient and that I might not get a result until Monday.

The test that was done at Baptist was reported to me the same day, what is the hold up on this?? I know ya'll don't have the answers, I'm just venting a bit. I hope to hear something tomorrow because this is really weighing on my mind.

Thank you all for the support you provide and hugs to everyone.

Dori
 
G

gocamping2

New member
I'm no doctor and I'm still fairly new to this CF stuff but that seems really odd to me that you're on your 3rd sweat test and that was a couple of days ago and also they couldn't confirm from the first 2 tests ( unless they couldn't get enough sweat). We got my son's confirmation on the sweat test 1 hr after we finally got enough sweat.

Knowning what I know, I would have to say if it was me, I would be demanding from my doctor a genetics test on the child. It's hard to mess up those results if they have all of the DNA and stuff. In addition, if your child does have CF, the genetic test will tell what mutation/stain that they would have- if any.
 
G

gocamping2

New member
I'm no doctor and I'm still fairly new to this CF stuff but that seems really odd to me that you're on your 3rd sweat test and that was a couple of days ago and also they couldn't confirm from the first 2 tests ( unless they couldn't get enough sweat). We got my son's confirmation on the sweat test 1 hr after we finally got enough sweat.

Knowning what I know, I would have to say if it was me, I would be demanding from my doctor a genetics test on the child. It's hard to mess up those results if they have all of the DNA and stuff. In addition, if your child does have CF, the genetic test will tell what mutation/stain that they would have- if any.
 
G

gocamping2

New member
I'm no doctor and I'm still fairly new to this CF stuff but that seems really odd to me that you're on your 3rd sweat test and that was a couple of days ago and also they couldn't confirm from the first 2 tests ( unless they couldn't get enough sweat). We got my son's confirmation on the sweat test 1 hr after we finally got enough sweat.

Knowning what I know, I would have to say if it was me, I would be demanding from my doctor a genetics test on the child. It's hard to mess up those results if they have all of the DNA and stuff. In addition, if your child does have CF, the genetic test will tell what mutation/stain that they would have- if any.
 
G

gocamping2

New member
I'm no doctor and I'm still fairly new to this CF stuff but that seems really odd to me that you're on your 3rd sweat test and that was a couple of days ago and also they couldn't confirm from the first 2 tests ( unless they couldn't get enough sweat). We got my son's confirmation on the sweat test 1 hr after we finally got enough sweat.

Knowning what I know, I would have to say if it was me, I would be demanding from my doctor a genetics test on the child. It's hard to mess up those results if they have all of the DNA and stuff. In addition, if your child does have CF, the genetic test will tell what mutation/stain that they would have- if any.
 
G

gocamping2

New member
I'm no doctor and I'm still fairly new to this CF stuff but that seems really odd to me that you're on your 3rd sweat test and that was a couple of days ago and also they couldn't confirm from the first 2 tests ( unless they couldn't get enough sweat). We got my son's confirmation on the sweat test 1 hr after we finally got enough sweat.

Knowning what I know, I would have to say if it was me, I would be demanding from my doctor a genetics test on the child. It's hard to mess up those results if they have all of the DNA and stuff. In addition, if your child does have CF, the genetic test will tell what mutation/stain that they would have- if any.
 
B

braydenzmom

Guest
i second arianas suggestion about getting full genetic testing. it can be expensive, but im sure insurance will help. if there is even anything to worry about, at least you will be 100% sure of the results. ive talked to so many people that were misdiagnosed for YEARS because of a normal sweat test. (some as late as 21 years old) as a matter of fact, im still pregnant with my little boy, we found out he has CF through amniocentesis, but the doctors told me with his specific mutations theres a very good chance he would have a normal sweat test. so needless to say, i am SO glad we had the amnio. that gave us all the answers we needed, and now we will be able to begin treatment for him as soon as he is born. and if theres nothing wrong, you can rest easy and never have to think about it again. good luck, hope you hear something soon!
 
B

braydenzmom

Guest
i second arianas suggestion about getting full genetic testing. it can be expensive, but im sure insurance will help. if there is even anything to worry about, at least you will be 100% sure of the results. ive talked to so many people that were misdiagnosed for YEARS because of a normal sweat test. (some as late as 21 years old) as a matter of fact, im still pregnant with my little boy, we found out he has CF through amniocentesis, but the doctors told me with his specific mutations theres a very good chance he would have a normal sweat test. so needless to say, i am SO glad we had the amnio. that gave us all the answers we needed, and now we will be able to begin treatment for him as soon as he is born. and if theres nothing wrong, you can rest easy and never have to think about it again. good luck, hope you hear something soon!
 
B

braydenzmom

Guest
i second arianas suggestion about getting full genetic testing. it can be expensive, but im sure insurance will help. if there is even anything to worry about, at least you will be 100% sure of the results. ive talked to so many people that were misdiagnosed for YEARS because of a normal sweat test. (some as late as 21 years old) as a matter of fact, im still pregnant with my little boy, we found out he has CF through amniocentesis, but the doctors told me with his specific mutations theres a very good chance he would have a normal sweat test. so needless to say, i am SO glad we had the amnio. that gave us all the answers we needed, and now we will be able to begin treatment for him as soon as he is born. and if theres nothing wrong, you can rest easy and never have to think about it again. good luck, hope you hear something soon!
 
B

braydenzmom

Guest
i second arianas suggestion about getting full genetic testing. it can be expensive, but im sure insurance will help. if there is even anything to worry about, at least you will be 100% sure of the results. ive talked to so many people that were misdiagnosed for YEARS because of a normal sweat test. (some as late as 21 years old) as a matter of fact, im still pregnant with my little boy, we found out he has CF through amniocentesis, but the doctors told me with his specific mutations theres a very good chance he would have a normal sweat test. so needless to say, i am SO glad we had the amnio. that gave us all the answers we needed, and now we will be able to begin treatment for him as soon as he is born. and if theres nothing wrong, you can rest easy and never have to think about it again. good luck, hope you hear something soon!
 
B

braydenzmom

Guest
i second arianas suggestion about getting full genetic testing. it can be expensive, but im sure insurance will help. if there is even anything to worry about, at least you will be 100% sure of the results. ive talked to so many people that were misdiagnosed for YEARS because of a normal sweat test. (some as late as 21 years old) as a matter of fact, im still pregnant with my little boy, we found out he has CF through amniocentesis, but the doctors told me with his specific mutations theres a very good chance he would have a normal sweat test. so needless to say, i am SO glad we had the amnio. that gave us all the answers we needed, and now we will be able to begin treatment for him as soon as he is born. and if theres nothing wrong, you can rest easy and never have to think about it again. good luck, hope you hear something soon!
 
F

F8AW8SU2

New member
Ariana,
We have had 3 sweat tests total now. The first one I was verbally told was negative so I thought we were done. That test was ordered by a specialist and my peds office said they never received a copy of the results. Eventually they said that it was "inconclusive" and based on his symptoms wanted a repeat. The repeat was done at a different hospital by a different technique. That test came back 53.

It was explained to me that the second test was only a screen and that if the result was over 50 we would be referred to the certified center for confirmation and quantitative analysis. That is the third test for which we are still waiting on results.

Hope that made sense!

If this test ends up iffy - I will be screaming at the top of my lungs for the full Ambry!

Dori
 
F

F8AW8SU2

New member
Ariana,
We have had 3 sweat tests total now. The first one I was verbally told was negative so I thought we were done. That test was ordered by a specialist and my peds office said they never received a copy of the results. Eventually they said that it was "inconclusive" and based on his symptoms wanted a repeat. The repeat was done at a different hospital by a different technique. That test came back 53.

It was explained to me that the second test was only a screen and that if the result was over 50 we would be referred to the certified center for confirmation and quantitative analysis. That is the third test for which we are still waiting on results.

Hope that made sense!

If this test ends up iffy - I will be screaming at the top of my lungs for the full Ambry!

Dori
 
F

F8AW8SU2

New member
Ariana,
We have had 3 sweat tests total now. The first one I was verbally told was negative so I thought we were done. That test was ordered by a specialist and my peds office said they never received a copy of the results. Eventually they said that it was "inconclusive" and based on his symptoms wanted a repeat. The repeat was done at a different hospital by a different technique. That test came back 53.

It was explained to me that the second test was only a screen and that if the result was over 50 we would be referred to the certified center for confirmation and quantitative analysis. That is the third test for which we are still waiting on results.

Hope that made sense!

If this test ends up iffy - I will be screaming at the top of my lungs for the full Ambry!

Dori
 
F

F8AW8SU2

New member
Ariana,
We have had 3 sweat tests total now. The first one I was verbally told was negative so I thought we were done. That test was ordered by a specialist and my peds office said they never received a copy of the results. Eventually they said that it was "inconclusive" and based on his symptoms wanted a repeat. The repeat was done at a different hospital by a different technique. That test came back 53.

It was explained to me that the second test was only a screen and that if the result was over 50 we would be referred to the certified center for confirmation and quantitative analysis. That is the third test for which we are still waiting on results.

Hope that made sense!

If this test ends up iffy - I will be screaming at the top of my lungs for the full Ambry!

Dori
 
F

F8AW8SU2

New member
Ariana,
We have had 3 sweat tests total now. The first one I was verbally told was negative so I thought we were done. That test was ordered by a specialist and my peds office said they never received a copy of the results. Eventually they said that it was "inconclusive" and based on his symptoms wanted a repeat. The repeat was done at a different hospital by a different technique. That test came back 53.

It was explained to me that the second test was only a screen and that if the result was over 50 we would be referred to the certified center for confirmation and quantitative analysis. That is the third test for which we are still waiting on results.

Hope that made sense!

If this test ends up iffy - I will be screaming at the top of my lungs for the full Ambry!

Dori
 
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