My daughter is having the nasal potential difference test next thurs.

Mistyjo

New member
<P>My daughter is having the nasal potential difference test next thurs.  Any advice and experience is greatly appreciated!  </P>
<P>I've posted before but will give a brief background.  </P>
<P>two borderline sweat test 41 and 50</P>
<P>one disease causing cf gene mutation and another cf gene mutation that is not suppose to be disease causing.</P>
<P>failure to thrive and chronic constipation</P>
<P>cousin with cf, maternal grandmother with pulmonary fibrosis, chronic pneumonia, sever GI probs.</P>
<P>All of her tests have come back normal expect for low vitamin D.  Fecal elestase is normal.</P>
<P>Thank you for your time!!</P>
 

Mistyjo

New member
<P>My daughter is having the nasal potential difference test next thurs. Any advice and experience is greatly appreciated! </P>
<P>I've posted before but will give a brief background. </P>
<P>two borderline sweat test 41 and 50</P>
<P>one disease causing cf gene mutation and another cf gene mutation that is not suppose to be disease causing.</P>
<P>failure to thrive and chronic constipation</P>
<P>cousin with cf, maternal grandmother with pulmonary fibrosis, chronic pneumonia, sever GI probs.</P>
<P>All of her tests have come back normal expect for low vitamin D. Fecal elestase is normal.</P>
<P>Thank you for your time!!</P>
 

Mistyjo

New member
<P><BR>My daughter is having the nasal potential difference test next thurs. Any advice and experience is greatly appreciated! </P>
<P>I've posted before but will give a brief background. </P>
<P>two borderline sweat test 41 and 50</P>
<P>one disease causing cf gene mutation and another cf gene mutation that is not suppose to be disease causing.</P>
<P>failure to thrive and chronic constipation</P>
<P>cousin with cf, maternal grandmother with pulmonary fibrosis, chronic pneumonia, sever GI probs.</P>
<P>All of her tests have come back normal expect for low vitamin D. Fecal elestase is normal.</P>
<P>Thank you for your time!!</P>
 

hmw

New member
I wish the very best!!

My son had the NPD to try and determine whether he was a carrier or if he had CF, and due to normal results has been deemed a 'symptomatic carrier.'

He had 3 sweat tests, ranging from 30,48,54 and has pretty significant asthma (fev1 in lower 70's when asymptomatic.) He's never had fecal testing, but is quite low on the growth charts. However- his bone age came back delayed a year when the endo checked it- so when you look at the charts for his age minus a year, his growth looks much more reassuring. He also has low vitD, but I don't think any other fat soluble vitamins were checked in the labs the endo ordered. As a followup to the low D, the endo ordered some other levels that I haven't heard about yet (an expanded calcium and magnesium panel, and a different vit D, I think, and a few other things.) I will let you know what I hear about that if you would like.
 

hmw

New member
I wish the very best!!

My son had the NPD to try and determine whether he was a carrier or if he had CF, and due to normal results has been deemed a 'symptomatic carrier.'

He had 3 sweat tests, ranging from 30,48,54 and has pretty significant asthma (fev1 in lower 70's when asymptomatic.) He's never had fecal testing, but is quite low on the growth charts. However- his bone age came back delayed a year when the endo checked it- so when you look at the charts for his age minus a year, his growth looks much more reassuring. He also has low vitD, but I don't think any other fat soluble vitamins were checked in the labs the endo ordered. As a followup to the low D, the endo ordered some other levels that I haven't heard about yet (an expanded calcium and magnesium panel, and a different vit D, I think, and a few other things.) I will let you know what I hear about that if you would like.
 

hmw

New member
I wish the very best!!
<br />
<br />My son had the NPD to try and determine whether he was a carrier or if he had CF, and due to normal results has been deemed a 'symptomatic carrier.'
<br />
<br />He had 3 sweat tests, ranging from 30,48,54 and has pretty significant asthma (fev1 in lower 70's when asymptomatic.) He's never had fecal testing, but is quite low on the growth charts. However- his bone age came back delayed a year when the endo checked it- so when you look at the charts for his age minus a year, his growth looks much more reassuring. He also has low vitD, but I don't think any other fat soluble vitamins were checked in the labs the endo ordered. As a followup to the low D, the endo ordered some other levels that I haven't heard about yet (an expanded calcium and magnesium panel, and a different vit D, I think, and a few other things.) I will let you know what I hear about that if you would like.
 

Beccamom

New member
My DD had the NPD test twice.  If your DD is at all sick before the test I would reschedule it because that was why my DD had to do it twice.  The test itself took about 1 1/2 hours.  We requested numbing cream for the IV needle, but most don't need it since it is a very small needle and goes just under the skin.  My DD was not opposed to the 2nd NPD test, so I took it that it was not that bad.  I did bring her I-touch and she could watch TV a bit, but with the liquids constantly dripping from the nose she couldn't play any games.  I ended up reading to my DD the 2nd time and I think that made the time go faster for her.  Best wishes. 
 

Beccamom

New member
My DD had the NPD test twice. If your DD is at all sick before the test I would reschedule it because that was why my DD had to do it twice. The test itself took about 1 1/2 hours. We requested numbing cream for the IV needle, but most don't need it since it is a very small needle and goes just under the skin. My DD was not opposed to the 2nd NPD test, so I took it that it was not that bad. I did bring her I-touch and she could watch TV a bit, but with the liquids constantly dripping from the nose she couldn't play any games. I ended up reading to my DD the 2nd time and I think that made the time go faster for her. Best wishes.
 

Beccamom

New member
<BR>My DD had the NPD test twice. If your DD is at all sick before the test I would reschedule it because that was why my DD had to do it twice. The test itself took about 1 1/2 hours. We requested numbing cream for the IV needle, but most don't need it since it is a very small needle and goes just under the skin. My DD was not opposed to the 2nd NPD test, so I took it that it was not that bad. I did bring her I-touch and she could watch TV a bit, but with the liquids constantly dripping from the nose she couldn't play any games. I ended up reading to my DD the 2nd time and I think that made the time go faster for her. Best wishes.
 

Mistyjo

New member
Thanks for the replies. Harriett that would be great if you will keep me updated about his vit d level. I want her's rechecked in a couple months.
 

Mistyjo

New member
Thanks for the replies. Harriett that would be great if you will keep me updated about his vit d level. I want her's rechecked in a couple months.
 

Mistyjo

New member
Thanks for the replies. Harriett that would be great if you will keep me updated about his vit d level. I want her's rechecked in a couple months.
 
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