mommy2cass
New member
Our Cassidie was born with Meconium illeus at birth. She was able to pass it on her own without surgery 24-48hrs after she was born. She is DF508 and R1162x
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Meconium illeus at birth
- Thread starter mum2kj
- Start date
mommy2cass
New member
Our Cassidie was born with Meconium illeus at birth. She was able to pass it on her own without surgery 24-48hrs after she was born. She is DF508 and R1162x
M
Mommafirst
Guest
Alyssa had an MI at birth that did not require surgery. Her mutations are W1282X (class 1) and Y1032C. The second one hasn't been classed yet, but the data I've found shows it is consistent with pancreatic sufficiency (which Alyssa is) and is probably a class 4 or 5.<br>
<br>
ANYONE else have an MI but turn out to be pancreatic sufficient??? I think it is soooo odd, since I would think the MI is related to the pancreas.
<br>
ANYONE else have an MI but turn out to be pancreatic sufficient??? I think it is soooo odd, since I would think the MI is related to the pancreas.
M
Mommafirst
Guest
Alyssa had an MI at birth that did not require surgery. Her mutations are W1282X (class 1) and Y1032C. The second one hasn't been classed yet, but the data I've found shows it is consistent with pancreatic sufficiency (which Alyssa is) and is probably a class 4 or 5.<br>
<br>
ANYONE else have an MI but turn out to be pancreatic sufficient??? I think it is soooo odd, since I would think the MI is related to the pancreas.
<br>
ANYONE else have an MI but turn out to be pancreatic sufficient??? I think it is soooo odd, since I would think the MI is related to the pancreas.
M
Mommafirst
Guest
Alyssa had an MI at birth that did not require surgery. Her mutations are W1282X (class 1) and Y1032C. The second one hasn't been classed yet, but the data I've found shows it is consistent with pancreatic sufficiency (which Alyssa is) and is probably a class 4 or 5.<br>
<br>
ANYONE else have an MI but turn out to be pancreatic sufficient??? I think it is soooo odd, since I would think the MI is related to the pancreas.
<br>
ANYONE else have an MI but turn out to be pancreatic sufficient??? I think it is soooo odd, since I would think the MI is related to the pancreas.
T
tammykrumrey
Guest
I have read, and I don't remember exactly where, but that it is more common in the DeltaF508 mutations, especially presenting itself (MI, that is) more often in double DF508 CF patients. If I find the study, I will pass it on.
T
tammykrumrey
Guest
I have read, and I don't remember exactly where, but that it is more common in the DeltaF508 mutations, especially presenting itself (MI, that is) more often in double DF508 CF patients. If I find the study, I will pass it on.
T
tammykrumrey
Guest
I have read, and I don't remember exactly where, but that it is more common in the DeltaF508 mutations, especially presenting itself (MI, that is) more often in double DF508 CF patients. If I find the study, I will pass it on.
it's very interesting that most of it involves the delta f508. even though i know that its the most common gene.
For the ones who had an operation,
how well do you absorb vitamins. Kayla doesnt absorb vitamin A very well at all.
also how much bowel did you lose?
Kayla lost 30cm of her small intestine and nearly had to have a bag.
her scar is also above her belly button and her stomach creases (fat roll) at the scar instead of the bellybutton, she hates this with a passion lol.
For the ones who had an operation,
how well do you absorb vitamins. Kayla doesnt absorb vitamin A very well at all.
also how much bowel did you lose?
Kayla lost 30cm of her small intestine and nearly had to have a bag.
her scar is also above her belly button and her stomach creases (fat roll) at the scar instead of the bellybutton, she hates this with a passion lol.
it's very interesting that most of it involves the delta f508. even though i know that its the most common gene.
For the ones who had an operation,
how well do you absorb vitamins. Kayla doesnt absorb vitamin A very well at all.
also how much bowel did you lose?
Kayla lost 30cm of her small intestine and nearly had to have a bag.
her scar is also above her belly button and her stomach creases (fat roll) at the scar instead of the bellybutton, she hates this with a passion lol.
For the ones who had an operation,
how well do you absorb vitamins. Kayla doesnt absorb vitamin A very well at all.
also how much bowel did you lose?
Kayla lost 30cm of her small intestine and nearly had to have a bag.
her scar is also above her belly button and her stomach creases (fat roll) at the scar instead of the bellybutton, she hates this with a passion lol.
it's very interesting that most of it involves the delta f508. even though i know that its the most common gene.
For the ones who had an operation,
how well do you absorb vitamins. Kayla doesnt absorb vitamin A very well at all.
also how much bowel did you lose?
Kayla lost 30cm of her small intestine and nearly had to have a bag.
her scar is also above her belly button and her stomach creases (fat roll) at the scar instead of the bellybutton, she hates this with a passion lol.
For the ones who had an operation,
how well do you absorb vitamins. Kayla doesnt absorb vitamin A very well at all.
also how much bowel did you lose?
Kayla lost 30cm of her small intestine and nearly had to have a bag.
her scar is also above her belly button and her stomach creases (fat roll) at the scar instead of the bellybutton, she hates this with a passion lol.
Emily65Roses
New member
I suck at absorbing vitamins... and I didn't lose any bowel. They just went in, removed the blockage, and sewed me back up.
Emily65Roses
New member
I suck at absorbing vitamins... and I didn't lose any bowel. They just went in, removed the blockage, and sewed me back up.
Emily65Roses
New member
I suck at absorbing vitamins... and I didn't lose any bowel. They just went in, removed the blockage, and sewed me back up.
fourkidsmom
New member
My 6 yr old son with CF, showed a bowel blockage when I was 7 months pregnant, they also operated on him right after birth. He too has 2 scars, one all the way across his belly from the surgery at birth and one half way cross his belly (a little above the first scar) when they reconnected him 2 months later for failure to thrive. He has the double F508.
Fourkidsmom
Fourkidsmom
fourkidsmom
New member
My 6 yr old son with CF, showed a bowel blockage when I was 7 months pregnant, they also operated on him right after birth. He too has 2 scars, one all the way across his belly from the surgery at birth and one half way cross his belly (a little above the first scar) when they reconnected him 2 months later for failure to thrive. He has the double F508.
Fourkidsmom
Fourkidsmom
fourkidsmom
New member
My 6 yr old son with CF, showed a bowel blockage when I was 7 months pregnant, they also operated on him right after birth. He too has 2 scars, one all the way across his belly from the surgery at birth and one half way cross his belly (a little above the first scar) when they reconnected him 2 months later for failure to thrive. He has the double F508.
Fourkidsmom
Fourkidsmom
My last vitamin check showed me borderline low on a few vitamins, with the sporadic vitamin taking I was doing- read "rare" vitamin taking, actually <img src=""> due to my med schedule with several "don't take this with vitamins, etc..." meds . I got my med schedule changed, and now I take them most of the time <img src="i/expressions/face-icon-small-wink.gif" border="0"> . I took enzymes as a kid, but I quit when I was 14 or so, and have actually felt better (less gas pain, less gas period, etc.). I am more than fine with my weight (as in, without enzymes, I have to watch what I eat sometimes or else the scale starts inching up, up, up...). I have had panceratitis once (when I was breastfeeding and weighed the least I've weighed since highschool- also had a stone in my bile duct at the time) and it runs in my family. I don't remember how much bowel I had removed, I guess I could see if my mom remembers <img src=""> . No colostomy, though, and my scar is on my right front of my abdomen, and goes up and down.
My last vitamin check showed me borderline low on a few vitamins, with the sporadic vitamin taking I was doing- read "rare" vitamin taking, actually <img src=""> due to my med schedule with several "don't take this with vitamins, etc..." meds . I got my med schedule changed, and now I take them most of the time <img src="i/expressions/face-icon-small-wink.gif" border="0"> . I took enzymes as a kid, but I quit when I was 14 or so, and have actually felt better (less gas pain, less gas period, etc.). I am more than fine with my weight (as in, without enzymes, I have to watch what I eat sometimes or else the scale starts inching up, up, up...). I have had panceratitis once (when I was breastfeeding and weighed the least I've weighed since highschool- also had a stone in my bile duct at the time) and it runs in my family. I don't remember how much bowel I had removed, I guess I could see if my mom remembers <img src=""> . No colostomy, though, and my scar is on my right front of my abdomen, and goes up and down.
My last vitamin check showed me borderline low on a few vitamins, with the sporadic vitamin taking I was doing- read "rare" vitamin taking, actually <img src=""> due to my med schedule with several "don't take this with vitamins, etc..." meds . I got my med schedule changed, and now I take them most of the time <img src="i/expressions/face-icon-small-wink.gif" border="0"> . I took enzymes as a kid, but I quit when I was 14 or so, and have actually felt better (less gas pain, less gas period, etc.). I am more than fine with my weight (as in, without enzymes, I have to watch what I eat sometimes or else the scale starts inching up, up, up...). I have had panceratitis once (when I was breastfeeding and weighed the least I've weighed since highschool- also had a stone in my bile duct at the time) and it runs in my family. I don't remember how much bowel I had removed, I guess I could see if my mom remembers <img src=""> . No colostomy, though, and my scar is on my right front of my abdomen, and goes up and down.