NPD test went terrible!!!!!!

[hmw]

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

 

[hmw]

Here are a couple articles, the first a pretty comprehensive one of a study done in Germany and the 2nd of one done here at Chapel Hill:
<a target=_blank class=ftalternatingbarlinklarge href="http://ajpgi.physiology.org/content/277/3/G709.full">CFTR-mediated inhibition of epithelial Na+ conductance in human colon is defective in cystic fibrosis</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/pubmed/14699484">The DeltaF508 mutation results in loss of CFTR function and mature protein in native human colon.</a>

 

[hmw]

Here are a couple articles, the first a pretty comprehensive one of a study done in Germany and the 2nd of one done here at Chapel Hill:
<a target=_blank class=ftalternatingbarlinklarge href="http://ajpgi.physiology.org/content/277/3/G709.full">CFTR-mediated inhibition of epithelial Na+ conductance in human colon is defective in cystic fibrosis</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/pubmed/14699484">The DeltaF508 mutation results in loss of CFTR function and mature protein in native human colon.</a>

 

[hmw]

Here are a couple articles, the first a pretty comprehensive one of a study done in Germany and the 2nd of one done here at Chapel Hill:
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://ajpgi.physiology.org/content/277/3/G709.full">CFTR-mediated inhibition of epithelial Na+ conductance in human colon is defective in cystic fibrosis</a>
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/pubmed/14699484">The DeltaF508 mutation results in loss of CFTR function and mature protein in native human colon.</a>

 

[Mistyjo]

Thanks for the replies and the articles. She had to have 28 inches of her colon removed. It was coiled on top of itself. The CF specialist actually talked to the surgeon and they arranged for her colon tissue to be tested here. We are still in the hosp. We've been here since sunday so this is day 5. We are hoping to go home in a couple of days.

 

[Mistyjo]

Thanks for the replies and the articles. She had to have 28 inches of her colon removed. It was coiled on top of itself. The CF specialist actually talked to the surgeon and they arranged for her colon tissue to be tested here. We are still in the hosp. We've been here since sunday so this is day 5. We are hoping to go home in a couple of days.

 

[Mistyjo]

Thanks for the replies and the articles. She had to have 28 inches of her colon removed. It was coiled on top of itself. The CF specialist actually talked to the surgeon and they arranged for her colon tissue to be tested here. We are still in the hosp. We've been here since sunday so this is day 5. We are hoping to go home in a couple of days.

 

[Karenmichelle]

Mistyjo...I am sorry for all that your daughter and family have gone through. Prior to her surgery, did you have any idea that the intestines were coiled on top of one another (xray, CT)? Lifted you all up in prayer. God bless

 

[Karenmichelle]

Mistyjo...I am sorry for all that your daughter and family have gone through. Prior to her surgery, did you have any idea that the intestines were coiled on top of one another (xray, CT)? Lifted you all up in prayer. God bless

 

[Karenmichelle]

Mistyjo...I am sorry for all that your daughter and family have gone through. Prior to her surgery, did you have any idea that the intestines were coiled on top of one another (xray, CT)? Lifted you all up in prayer. God bless<BR>

 

[Mistyjo]

No, actually we were at another childrens hospital for a year and they never found it. I knew we were missing something so we went for a second opinion at another childrens hospital. Prior to this she had x-rays, MRI, anorectal manometry, sitz-marker study and blood work. The test that finally showed something was wrong was a contrast enema. I dont' think the surgeon expected it to be as bad as it was. Our nurses were shocked! Everyone can't believe she made it this long without emergency surgery for bowel obstruction.
Thank you for all the support!!

 

[Mistyjo]

No, actually we were at another childrens hospital for a year and they never found it. I knew we were missing something so we went for a second opinion at another childrens hospital. Prior to this she had x-rays, MRI, anorectal manometry, sitz-marker study and blood work. The test that finally showed something was wrong was a contrast enema. I dont' think the surgeon expected it to be as bad as it was. Our nurses were shocked! Everyone can't believe she made it this long without emergency surgery for bowel obstruction.
Thank you for all the support!!

 

[Mistyjo]

No, actually we were at another childrens hospital for a year and they never found it. I knew we were missing something so we went for a second opinion at another childrens hospital. Prior to this she had x-rays, MRI, anorectal manometry, sitz-marker study and blood work. The test that finally showed something was wrong was a contrast enema. I dont' think the surgeon expected it to be as bad as it was. Our nurses were shocked! Everyone can't believe she made it this long without emergency surgery for bowel obstruction.
<br />Thank you for all the support!!