Nasal Potential Difference Atlanta-Cincinnati Anyone?

[Paige3]

Hi, haven't posted in a while. We recently got a second opinion on ds 16. It was suggested that we get a nasal potential difference test this summer on him and his younger brother. We were told this is the gold standard for diagnosing atypical cf. Atlanta, Birmingham and Cincinnati were the places suggested as they aren't done anywhere in our state.

Has anyone here had this done at either of these places or have any info?

Thanks<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[Paige3]

Hi, haven't posted in a while. We recently got a second opinion on ds 16. It was suggested that we get a nasal potential difference test this summer on him and his younger brother. We were told this is the gold standard for diagnosing atypical cf. Atlanta, Birmingham and Cincinnati were the places suggested as they aren't done anywhere in our state.

Has anyone here had this done at either of these places or have any info?

Thanks<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[Paige3]

Hi, haven't posted in a while. We recently got a second opinion on ds 16. It was suggested that we get a nasal potential difference test this summer on him and his younger brother. We were told this is the gold standard for diagnosing atypical cf. Atlanta, Birmingham and Cincinnati were the places suggested as they aren't done anywhere in our state.
<br />
<br />Has anyone here had this done at either of these places or have any info?
<br />
<br />Thanks<img src="i/expressions/face-icon-small-happy.gif" border="0">
<br />

 

[anchored]

We haven't had this done yet, but we are looking into it at Children's Hospital of Philadelphia where they are doing a study.

<a target=_blank class=ftalternatingbarlinklarge href="http://clinicaltrials.gov/ct2/show/NCT00589745
">http://clinicaltrials.gov/ct2/show/NCT00589745
</a>
We've been in contact with the research manager and the study involves a about 2 hrs of time. If its with a young child sedation may be required and that might take longer.

Hope this helps. If you have to travel at least Philadelphia has lots of interesting things to do!

 

[anchored]

We haven't had this done yet, but we are looking into it at Children's Hospital of Philadelphia where they are doing a study.

<a target=_blank class=ftalternatingbarlinklarge href="http://clinicaltrials.gov/ct2/show/NCT00589745
">http://clinicaltrials.gov/ct2/show/NCT00589745
</a>
We've been in contact with the research manager and the study involves a about 2 hrs of time. If its with a young child sedation may be required and that might take longer.

Hope this helps. If you have to travel at least Philadelphia has lots of interesting things to do!

 

[anchored]

We haven't had this done yet, but we are looking into it at Children's Hospital of Philadelphia where they are doing a study.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://clinicaltrials.gov/ct2/show/NCT00589745
">http://clinicaltrials.gov/ct2/show/NCT00589745
</a><br />
<br />We've been in contact with the research manager and the study involves a about 2 hrs of time. If its with a young child sedation may be required and that might take longer.
<br />
<br />Hope this helps. If you have to travel at least Philadelphia has lots of interesting things to do!
<br />

 

[tacos99]

Hi. We are from Birmingham and 2(1wcf and 1wocf) of our children have had npd done at Children's Hospital. The test was done as part of a research project to perfect the test even more. Dr. Clancy is the pulmonologist in charge. He and his staff are great. I cannot say enough good things about them. If you are near Alabama I would definitely recommend coming to Children's. If I can answer any questions for you just let me know.

 

[tacos99]

Hi. We are from Birmingham and 2(1wcf and 1wocf) of our children have had npd done at Children's Hospital. The test was done as part of a research project to perfect the test even more. Dr. Clancy is the pulmonologist in charge. He and his staff are great. I cannot say enough good things about them. If you are near Alabama I would definitely recommend coming to Children's. If I can answer any questions for you just let me know.

 

[tacos99]

Hi. We are from Birmingham and 2(1wcf and 1wocf) of our children have had npd done at Children's Hospital. The test was done as part of a research project to perfect the test even more. Dr. Clancy is the pulmonologist in charge. He and his staff are great. I cannot say enough good things about them. If you are near Alabama I would definitely recommend coming to Children's. If I can answer any questions for you just let me know.

 

[hmw]

Anchored- THANK YOU for posting this information about the CHOP clinical study. We need this done for our son and at the moment plans are in place to take him to Hopkins, pending insurance approval (it's out of network.) However, having him be part of a clinical trial is of interest to me as well.

My son fits the criteria for the trial: borderline sweat test (two, actually), one known mutation, and some symptoms of concern. I'm going to look into this.

 

[hmw]

Anchored- THANK YOU for posting this information about the CHOP clinical study. We need this done for our son and at the moment plans are in place to take him to Hopkins, pending insurance approval (it's out of network.) However, having him be part of a clinical trial is of interest to me as well.

My son fits the criteria for the trial: borderline sweat test (two, actually), one known mutation, and some symptoms of concern. I'm going to look into this.

 

[hmw]

Anchored- THANK YOU for posting this information about the CHOP clinical study. We need this done for our son and at the moment plans are in place to take him to Hopkins, pending insurance approval (it's out of network.) However, having him be part of a clinical trial is of interest to me as well.
<br />
<br />My son fits the criteria for the trial: borderline sweat test (two, actually), one known mutation, and some symptoms of concern. I'm going to look into this.

 

[pipersmom]

Paige, as a pp mentioned, I have no idea where you're from, but I would have absolutely NO qualms about using Cincy Children's for anything <img src="i/expressions/face-icon-small-smile.gif" border="0"> Piper attended clinic there for almost 4 years, until we moved out of the area, and I absolutely loved Dr. Acton & company.. shh..but I still miss them, and that was 5 yrs ago! <img src="i/expressions/face-icon-small-wink.gif" border="0"> They really stay on top of things research/education-wise..as I said, no qualms!

 

[pipersmom]

Paige, as a pp mentioned, I have no idea where you're from, but I would have absolutely NO qualms about using Cincy Children's for anything <img src="i/expressions/face-icon-small-smile.gif" border="0"> Piper attended clinic there for almost 4 years, until we moved out of the area, and I absolutely loved Dr. Acton & company.. shh..but I still miss them, and that was 5 yrs ago! <img src="i/expressions/face-icon-small-wink.gif" border="0"> They really stay on top of things research/education-wise..as I said, no qualms!

 

[pipersmom]

Paige, as a pp mentioned, I have no idea where you're from, but I would have absolutely NO qualms about using Cincy Children's for anything <img src="i/expressions/face-icon-small-smile.gif" border="0"> Piper attended clinic there for almost 4 years, until we moved out of the area, and I absolutely loved Dr. Acton & company.. shh..but I still miss them, and that was 5 yrs ago! <img src="i/expressions/face-icon-small-wink.gif" border="0"> They really stay on top of things research/education-wise..as I said, no qualms!

 

[Paige3]

Thanks everyone for all the info.<img src="i/expressions/face-icon-small-happy.gif" border="0">

Our sons are 16 and 12 so hopefully won't have any problems with the test.

We're in TN and Birmingham is actually closest to us, so good to know that info Taco. Can you tell me if they gave you the results the day of the test or did you have to wait for those?

Regarding insurance approval, we were told by the Dr. that it can't even be billed to insurance as it is not yet an approved medical test for cf. But that there is no charge for the test, the patient may even receive a small fee for participating.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Paige3]

Thanks everyone for all the info.<img src="i/expressions/face-icon-small-happy.gif" border="0">

Our sons are 16 and 12 so hopefully won't have any problems with the test.

We're in TN and Birmingham is actually closest to us, so good to know that info Taco. Can you tell me if they gave you the results the day of the test or did you have to wait for those?

Regarding insurance approval, we were told by the Dr. that it can't even be billed to insurance as it is not yet an approved medical test for cf. But that there is no charge for the test, the patient may even receive a small fee for participating.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Paige3]

Thanks everyone for all the info.<img src="i/expressions/face-icon-small-happy.gif" border="0">
<br />
<br />Our sons are 16 and 12 so hopefully won't have any problems with the test.
<br />
<br /> We're in TN and Birmingham is actually closest to us, so good to know that info Taco. Can you tell me if they gave you the results the day of the test or did you have to wait for those?
<br />
<br />Regarding insurance approval, we were told by the Dr. that it can't even be billed to insurance as it is not yet an approved medical test for cf. But that there is no charge for the test, the patient may even receive a small fee for participating.<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />

 

[tacos99]

Paige, I received the results as soon as the test was completed. It took about 40 minutes and the results come up on the computer screen (just a line that spikes if no cf and is flat if cf is present).

Both my children were payed for their participation.

 

[tacos99]

Paige, I received the results as soon as the test was completed. It took about 40 minutes and the results come up on the computer screen (just a line that spikes if no cf and is flat if cf is present).

Both my children were payed for their participation.