I'm just going to overreact, mkay?

[Mommafirst]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>yellowitchgrl</b></i>

I do know that my son was screened at birth and nothing came up. Do you know what that means exactly? What is that screening checking?</end quote></div>


Check your state to see the kind of testing they do. The tests are pretty new, so I don't know the accuracy of them.

I think following up with genetic testing is a really smart and proactive thing to do. I understand the frustration, but since he was 1 pt away from borderline it seems like pushing for more testing makes good sense.

 

[Mommafirst]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>yellowitchgrl</b></i>

I do know that my son was screened at birth and nothing came up. Do you know what that means exactly? What is that screening checking?</end quote></div>


Check your state to see the kind of testing they do. The tests are pretty new, so I don't know the accuracy of them.

I think following up with genetic testing is a really smart and proactive thing to do. I understand the frustration, but since he was 1 pt away from borderline it seems like pushing for more testing makes good sense.

 

[Mommafirst]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>yellowitchgrl</b></i>

I do know that my son was screened at birth and nothing came up. Do you know what that means exactly? What is that screening checking?</end quote></div>


Check your state to see the kind of testing they do. The tests are pretty new, so I don't know the accuracy of them.

I think following up with genetic testing is a really smart and proactive thing to do. I understand the frustration, but since he was 1 pt away from borderline it seems like pushing for more testing makes good sense.

 

[Mommafirst]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>yellowitchgrl</b></i>

I do know that my son was screened at birth and nothing came up. Do you know what that means exactly? What is that screening checking?</end quote>


Check your state to see the kind of testing they do. The tests are pretty new, so I don't know the accuracy of them.

I think following up with genetic testing is a really smart and proactive thing to do. I understand the frustration, but since he was 1 pt away from borderline it seems like pushing for more testing makes good sense.

 

[Mommafirst]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>yellowitchgrl</b></i>
<br />
<br />I do know that my son was screened at birth and nothing came up. Do you know what that means exactly? What is that screening checking?</end quote>
<br />
<br />
<br />Check your state to see the kind of testing they do. The tests are pretty new, so I don't know the accuracy of them.
<br />
<br />I think following up with genetic testing is a really smart and proactive thing to do. I understand the frustration, but since he was 1 pt away from borderline it seems like pushing for more testing makes good sense.

 

[just1more]

Normally the newborn screening is just that a screening.

It can't diagnose CF, it just indicates a possiblity. In addition, it is most likely going to catch the same ones as a sweat test (ie negative sweat test = less than normal presentation = less likely screening test will catch either).

At this point, if you are still wanting an answer; then I agree have them run the Ambry Amplified test. It will tell you one way or the other with almost absolute certainty.

 

[just1more]

Normally the newborn screening is just that a screening.

It can't diagnose CF, it just indicates a possiblity. In addition, it is most likely going to catch the same ones as a sweat test (ie negative sweat test = less than normal presentation = less likely screening test will catch either).

At this point, if you are still wanting an answer; then I agree have them run the Ambry Amplified test. It will tell you one way or the other with almost absolute certainty.

 

[just1more]

Normally the newborn screening is just that a screening.

It can't diagnose CF, it just indicates a possiblity. In addition, it is most likely going to catch the same ones as a sweat test (ie negative sweat test = less than normal presentation = less likely screening test will catch either).

At this point, if you are still wanting an answer; then I agree have them run the Ambry Amplified test. It will tell you one way or the other with almost absolute certainty.

 

[just1more]

Normally the newborn screening is just that a screening.

It can't diagnose CF, it just indicates a possiblity. In addition, it is most likely going to catch the same ones as a sweat test (ie negative sweat test = less than normal presentation = less likely screening test will catch either).

At this point, if you are still wanting an answer; then I agree have them run the Ambry Amplified test. It will tell you one way or the other with almost absolute certainty.

 

[just1more]

Normally the newborn screening is just that a screening.
<br />
<br />It can't diagnose CF, it just indicates a possiblity. In addition, it is most likely going to catch the same ones as a sweat test (ie negative sweat test = less than normal presentation = less likely screening test will catch either).
<br />
<br />At this point, if you are still wanting an answer; then I agree have them run the Ambry Amplified test. It will tell you one way or the other with almost absolute certainty.

 

[hmw]

I think it's a good idea that you are doing the test! The symptoms + that high of a 'normal' would support it. I'd also consider asking for a second sweat test while you wait. It's an inexpensive test, results come back really fast, and many drs want one anyway. My youngest was a negative, but a 36, and the drs at our clinic don't really like negatives that high. We only fully relaxed about HIM when genetic testing completely cleared him (as opposed to his sibs.)

I can't comment on the newborn screening because my kids never were... my state had no laws requiring it when they were born. <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> Like already mentioned though, it's a not foolproof test either.

I can tell you that this IS a great community that you have found. I only got here about 4mo ago and I was made to feel very welcome right away. There are a lot of caring- and knowledgeable- people here to turn to. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hmw]

I think it's a good idea that you are doing the test! The symptoms + that high of a 'normal' would support it. I'd also consider asking for a second sweat test while you wait. It's an inexpensive test, results come back really fast, and many drs want one anyway. My youngest was a negative, but a 36, and the drs at our clinic don't really like negatives that high. We only fully relaxed about HIM when genetic testing completely cleared him (as opposed to his sibs.)

I can't comment on the newborn screening because my kids never were... my state had no laws requiring it when they were born. <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> Like already mentioned though, it's a not foolproof test either.

I can tell you that this IS a great community that you have found. I only got here about 4mo ago and I was made to feel very welcome right away. There are a lot of caring- and knowledgeable- people here to turn to. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hmw]

I think it's a good idea that you are doing the test! The symptoms + that high of a 'normal' would support it. I'd also consider asking for a second sweat test while you wait. It's an inexpensive test, results come back really fast, and many drs want one anyway. My youngest was a negative, but a 36, and the drs at our clinic don't really like negatives that high. We only fully relaxed about HIM when genetic testing completely cleared him (as opposed to his sibs.)

I can't comment on the newborn screening because my kids never were... my state had no laws requiring it when they were born. <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> Like already mentioned though, it's a not foolproof test either.

I can tell you that this IS a great community that you have found. I only got here about 4mo ago and I was made to feel very welcome right away. There are a lot of caring- and knowledgeable- people here to turn to. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hmw]

I think it's a good idea that you are doing the test! The symptoms + that high of a 'normal' would support it. I'd also consider asking for a second sweat test while you wait. It's an inexpensive test, results come back really fast, and many drs want one anyway. My youngest was a negative, but a 36, and the drs at our clinic don't really like negatives that high. We only fully relaxed about HIM when genetic testing completely cleared him (as opposed to his sibs.)

I can't comment on the newborn screening because my kids never were... my state had no laws requiring it when they were born. <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> Like already mentioned though, it's a not foolproof test either.

I can tell you that this IS a great community that you have found. I only got here about 4mo ago and I was made to feel very welcome right away. There are a lot of caring- and knowledgeable- people here to turn to. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hmw]

I think it's a good idea that you are doing the test! The symptoms + that high of a 'normal' would support it. I'd also consider asking for a second sweat test while you wait. It's an inexpensive test, results come back really fast, and many drs want one anyway. My youngest was a negative, but a 36, and the drs at our clinic don't really like negatives that high. We only fully relaxed about HIM when genetic testing completely cleared him (as opposed to his sibs.)
<br />
<br />I can't comment on the newborn screening because my kids never were... my state had no laws requiring it when they were born. <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> Like already mentioned though, it's a not foolproof test either.
<br />
<br />I can tell you that this IS a great community that you have found. I only got here about 4mo ago and I was made to feel very welcome right away. There are a lot of caring- and knowledgeable- people here to turn to. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[babybear]

my understanding of the newborn screen is that it only checks for 25 mutations? When our daughter was diagnosed, she was flagged on the newborn screen with one and then they sent it to a different clinic for a more thorough test (this one tested for 60?)...didn't find anything on that and so then they did the sweat test which was borderline...did another a few weeks later which was positive, then we had the Ambry genetics test done which brought up her other mutation.

So yes, I think your doing the right thing in getting the genetics done

 

[babybear]

my understanding of the newborn screen is that it only checks for 25 mutations? When our daughter was diagnosed, she was flagged on the newborn screen with one and then they sent it to a different clinic for a more thorough test (this one tested for 60?)...didn't find anything on that and so then they did the sweat test which was borderline...did another a few weeks later which was positive, then we had the Ambry genetics test done which brought up her other mutation.

So yes, I think your doing the right thing in getting the genetics done

 

[babybear]

my understanding of the newborn screen is that it only checks for 25 mutations? When our daughter was diagnosed, she was flagged on the newborn screen with one and then they sent it to a different clinic for a more thorough test (this one tested for 60?)...didn't find anything on that and so then they did the sweat test which was borderline...did another a few weeks later which was positive, then we had the Ambry genetics test done which brought up her other mutation.

So yes, I think your doing the right thing in getting the genetics done

 

[babybear]

my understanding of the newborn screen is that it only checks for 25 mutations? When our daughter was diagnosed, she was flagged on the newborn screen with one and then they sent it to a different clinic for a more thorough test (this one tested for 60?)...didn't find anything on that and so then they did the sweat test which was borderline...did another a few weeks later which was positive, then we had the Ambry genetics test done which brought up her other mutation.

So yes, I think your doing the right thing in getting the genetics done

 

[babybear]

my understanding of the newborn screen is that it only checks for 25 mutations? When our daughter was diagnosed, she was flagged on the newborn screen with one and then they sent it to a different clinic for a more thorough test (this one tested for 60?)...didn't find anything on that and so then they did the sweat test which was borderline...did another a few weeks later which was positive, then we had the Ambry genetics test done which brought up her other mutation.
<br />
<br />So yes, I think your doing the right thing in getting the genetics done