NPD test went terrible!!!!!!

M

Mistyjo

New member
<P>My daughter had her npd test today and was unable to finish it.  She flipped out!  They were only able to get thru the first stage of the test which is the base line.  Her base line was -30.  The CF specialist said this is the high end of normal so wants to do another test.  She is having part of her colon removed due to chronic constipation so the cf doc wants to get a tissue sample of her colon and test it for cftr function.  Has anyone heard of this?  He said they just got approved for it. I know they are doing a lot of research at this hosp.</P>
<P> </P>
 
M

Mistyjo

New member
<P>My daughter had her npd test today and was unable to finish it. She flipped out! They were only able to get thru the first stage of the test which is the base line. Her base line was -30. The CF specialist said this is the high end of normal so wants to do another test. She is having part of her colon removed due to chronic constipation so the cf doc wants to get a tissue sample of her colon and test it for cftr function. Has anyone heard of this? He said they just got approved for it. I know they are doing a lot of research at this hosp.</P>
<P></P>
 
M

Mistyjo

New member
<P>My daughter had her npd test today and was unable to finish it. She flipped out! They were only able to get thru the first stage of the test which is the base line. Her base line was -30. The CF specialist said this is the high end of normal so wants to do another test. She is having part of her colon removed due to chronic constipation so the cf doc wants to get a tissue sample of her colon and test it for cftr function. Has anyone heard of this? He said they just got approved for it. I know they are doing a lot of research at this hosp.</P>
<P><BR></P>
 
R

rarab43

Guest
How old is she? My son has had it done several times-for the PTC124 study and he was in his late teens and early 20s. I would think it would be very difficult for a young child. I hate that it didnt go well but she just might not be old enough.
 
R

rarab43

Guest
How old is she? My son has had it done several times-for the PTC124 study and he was in his late teens and early 20s. I would think it would be very difficult for a young child. I hate that it didnt go well but she just might not be old enough.
 
R

rarab43

Guest
How old is she? My son has had it done several times-for the PTC124 study and he was in his late teens and early 20s. I would think it would be very difficult for a young child. I hate that it didnt go well but she just might not be old enough.
 
R

rarab43

Guest
How old is she? My son has had it done several times-for the PTC124 study and he was in his late teens and early 20s. I would think it would be very difficult for a young child. I hate that it didnt go well but she just might not be old enough.
 
R

rarab43

Guest
How old is she? My son has had it done several times-for the PTC124 study and he was in his late teens and early 20s. I would think it would be very difficult for a young child. I hate that it didnt go well but she just might not be old enough.
 
R

rarab43

Guest
How old is she? My son has had it done several times-for the PTC124 study and he was in his late teens and early 20s. I would think it would be very difficult for a young child. I hate that it didnt go well but she just might not be old enough.
 
C

Cherylwithone

Guest
<P>My daughter has a appendicostomy, because her colon does not work at all. It stopped working years ago.   We decided to do this because it allowed her to keep her colon intact.</P>
<P> </P>
<P>This allows her to clean her colon out every other day.  </P>
 
C

Cherylwithone

Guest
<P>My daughter has a appendicostomy, because her colon does not work at all. It stopped working years ago. We decided to do this because it allowed her to keep her colon intact.</P>
<P></P>
<P>This allows her to clean her colon out every other day. </P>
 
C

Cherylwithone

Guest
<P>My daughter has a appendicostomy, because her colon does not work at all. It stopped working years ago. We decided to do this because it allowed her to keep her colon intact.</P>
<P></P>
<P>This allows her to clean her colon out every other day. <BR></P>
 
M

Mistyjo

New member
She is 5 yr. I think she is one of the youngest ones they've tried the npd on. The cf doc said if it was -5 to -10 for baseline then there would be no reason to go further but -30 is end range of normal and beginning range for cf.

My daughter has a very redundant colon meaning extra loops. They are removing part of it. We don't know if she was born with redundant colon or if she developed it from chronic constipation.
 
M

Mistyjo

New member
She is 5 yr. I think she is one of the youngest ones they've tried the npd on. The cf doc said if it was -5 to -10 for baseline then there would be no reason to go further but -30 is end range of normal and beginning range for cf.

My daughter has a very redundant colon meaning extra loops. They are removing part of it. We don't know if she was born with redundant colon or if she developed it from chronic constipation.
 
M

Mistyjo

New member
She is 5 yr. I think she is one of the youngest ones they've tried the npd on. The cf doc said if it was -5 to -10 for baseline then there would be no reason to go further but -30 is end range of normal and beginning range for cf.
<br />
<br />My daughter has a very redundant colon meaning extra loops. They are removing part of it. We don't know if she was born with redundant colon or if she developed it from chronic constipation.
 
H

hmw

New member
Yes, cftr testing has been done on colon tissue. I will see if I can find a link. If her GI surgery is being done at the same hospital that offers the NPD testing, I would see if they can try NPD again while she's already sedated.

I'm so sorry the test was so hard on your daughter! <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
H

hmw

New member
Yes, cftr testing has been done on colon tissue. I will see if I can find a link. If her GI surgery is being done at the same hospital that offers the NPD testing, I would see if they can try NPD again while she's already sedated.

I'm so sorry the test was so hard on your daughter! <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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