Tummy Troubles and Los Angeles

[froggymama]

My question is a two parter:

Our daughter Adelaide (2.5w/CF) is severely pancreatic insufficient. She's on the highest dose of enzymes (mixture of Creon and Pancrecarb) and Miralax, and she's still having problems. She was up all night with gas pains and when she does have a bowel movement (every other day now) it's diarrea. About a month ago, she was impacted we moved it through, but she's still not having a bm everyday, and when she does it's super loose and bulky. And my guess is that she maybe holding her bowels in, because it's so uncomfortable when it comes out. So there could be toddler behavioral stuff on top of it. <img src="i/expressions/face-icon-small-confused.gif" border="0">

My question is: Has anyone tried Mucomyst orally? Does that help break up the pancreatic mucus? Has anyone been in this boat? And if so, what helped?

My second question is: We live in Los Angeles and our clinic at Children's Hospital in Hollywood does not have a GI specialist on staff, only a nutritionist. She's been helpful, but now we're entering new territory and need the big guns. If you live anywhere near LA, do you know of CF certified clinics where a GI doc is on staff? And if so, are you happy with the care you receive?

Thank you everyone! Btw, we have a doc appt. tomorrow, so hopefully some of these questions will be answered there, but from what I've witnessed CF families are the true experts! Thanks in advance. -Elise

 

[froggymama]

My question is a two parter:

Our daughter Adelaide (2.5w/CF) is severely pancreatic insufficient. She's on the highest dose of enzymes (mixture of Creon and Pancrecarb) and Miralax, and she's still having problems. She was up all night with gas pains and when she does have a bowel movement (every other day now) it's diarrea. About a month ago, she was impacted we moved it through, but she's still not having a bm everyday, and when she does it's super loose and bulky. And my guess is that she maybe holding her bowels in, because it's so uncomfortable when it comes out. So there could be toddler behavioral stuff on top of it. <img src="i/expressions/face-icon-small-confused.gif" border="0">

My question is: Has anyone tried Mucomyst orally? Does that help break up the pancreatic mucus? Has anyone been in this boat? And if so, what helped?

My second question is: We live in Los Angeles and our clinic at Children's Hospital in Hollywood does not have a GI specialist on staff, only a nutritionist. She's been helpful, but now we're entering new territory and need the big guns. If you live anywhere near LA, do you know of CF certified clinics where a GI doc is on staff? And if so, are you happy with the care you receive?

Thank you everyone! Btw, we have a doc appt. tomorrow, so hopefully some of these questions will be answered there, but from what I've witnessed CF families are the true experts! Thanks in advance. -Elise

 

[froggymama]

My question is a two parter:

Our daughter Adelaide (2.5w/CF) is severely pancreatic insufficient. She's on the highest dose of enzymes (mixture of Creon and Pancrecarb) and Miralax, and she's still having problems. She was up all night with gas pains and when she does have a bowel movement (every other day now) it's diarrea. About a month ago, she was impacted we moved it through, but she's still not having a bm everyday, and when she does it's super loose and bulky. And my guess is that she maybe holding her bowels in, because it's so uncomfortable when it comes out. So there could be toddler behavioral stuff on top of it. <img src="i/expressions/face-icon-small-confused.gif" border="0">

My question is: Has anyone tried Mucomyst orally? Does that help break up the pancreatic mucus? Has anyone been in this boat? And if so, what helped?

My second question is: We live in Los Angeles and our clinic at Children's Hospital in Hollywood does not have a GI specialist on staff, only a nutritionist. She's been helpful, but now we're entering new territory and need the big guns. If you live anywhere near LA, do you know of CF certified clinics where a GI doc is on staff? And if so, are you happy with the care you receive?

Thank you everyone! Btw, we have a doc appt. tomorrow, so hopefully some of these questions will be answered there, but from what I've witnessed CF families are the true experts! Thanks in advance. -Elise

 

[froggymama]

My question is a two parter:

Our daughter Adelaide (2.5w/CF) is severely pancreatic insufficient. She's on the highest dose of enzymes (mixture of Creon and Pancrecarb) and Miralax, and she's still having problems. She was up all night with gas pains and when she does have a bowel movement (every other day now) it's diarrea. About a month ago, she was impacted we moved it through, but she's still not having a bm everyday, and when she does it's super loose and bulky. And my guess is that she maybe holding her bowels in, because it's so uncomfortable when it comes out. So there could be toddler behavioral stuff on top of it. <img src="i/expressions/face-icon-small-confused.gif" border="0">

My question is: Has anyone tried Mucomyst orally? Does that help break up the pancreatic mucus? Has anyone been in this boat? And if so, what helped?

My second question is: We live in Los Angeles and our clinic at Children's Hospital in Hollywood does not have a GI specialist on staff, only a nutritionist. She's been helpful, but now we're entering new territory and need the big guns. If you live anywhere near LA, do you know of CF certified clinics where a GI doc is on staff? And if so, are you happy with the care you receive?

Thank you everyone! Btw, we have a doc appt. tomorrow, so hopefully some of these questions will be answered there, but from what I've witnessed CF families are the true experts! Thanks in advance. -Elise

 

[froggymama]

My question is a two parter:
<br />
<br />Our daughter Adelaide (2.5w/CF) is severely pancreatic insufficient. She's on the highest dose of enzymes (mixture of Creon and Pancrecarb) and Miralax, and she's still having problems. She was up all night with gas pains and when she does have a bowel movement (every other day now) it's diarrea. About a month ago, she was impacted we moved it through, but she's still not having a bm everyday, and when she does it's super loose and bulky. And my guess is that she maybe holding her bowels in, because it's so uncomfortable when it comes out. So there could be toddler behavioral stuff on top of it. <img src="i/expressions/face-icon-small-confused.gif" border="0">
<br />
<br />My question is: Has anyone tried Mucomyst orally? Does that help break up the pancreatic mucus? Has anyone been in this boat? And if so, what helped?
<br />
<br />My second question is: We live in Los Angeles and our clinic at Children's Hospital in Hollywood does not have a GI specialist on staff, only a nutritionist. She's been helpful, but now we're entering new territory and need the big guns. If you live anywhere near LA, do you know of CF certified clinics where a GI doc is on staff? And if so, are you happy with the care you receive?
<br />
<br />Thank you everyone! Btw, we have a doc appt. tomorrow, so hopefully some of these questions will be answered there, but from what I've witnessed CF families are the true experts! Thanks in advance. -Elise

 

[Ratatosk]

Ugh, I'd forgotten about poop holding. DS' daycare director thought that was his problem when he was about 18-20 months old. We were trying to switch him off of formula and at the same time he'd expressed an interest in the potty, so I got him a potty chair. He was HORRIFIED to find out THAT came out of him and our troubles began. When he was a baby, I suspected that he was associating stooling with pain/discomfort and would hold it.

We were able to use milk of mag... I do know that Dr. Carlos Milla --- formerly of U of MN has since gone on to Stanford -- sorry know it'd be a MAJOR trek. The family I met at great strides a couple years ago who use mucomyst go to the U of MN clinic....

 

[Ratatosk]

Ugh, I'd forgotten about poop holding. DS' daycare director thought that was his problem when he was about 18-20 months old. We were trying to switch him off of formula and at the same time he'd expressed an interest in the potty, so I got him a potty chair. He was HORRIFIED to find out THAT came out of him and our troubles began. When he was a baby, I suspected that he was associating stooling with pain/discomfort and would hold it.

We were able to use milk of mag... I do know that Dr. Carlos Milla --- formerly of U of MN has since gone on to Stanford -- sorry know it'd be a MAJOR trek. The family I met at great strides a couple years ago who use mucomyst go to the U of MN clinic....

 

[Ratatosk]

Ugh, I'd forgotten about poop holding. DS' daycare director thought that was his problem when he was about 18-20 months old. We were trying to switch him off of formula and at the same time he'd expressed an interest in the potty, so I got him a potty chair. He was HORRIFIED to find out THAT came out of him and our troubles began. When he was a baby, I suspected that he was associating stooling with pain/discomfort and would hold it.

We were able to use milk of mag... I do know that Dr. Carlos Milla --- formerly of U of MN has since gone on to Stanford -- sorry know it'd be a MAJOR trek. The family I met at great strides a couple years ago who use mucomyst go to the U of MN clinic....

 

[Ratatosk]

Ugh, I'd forgotten about poop holding. DS' daycare director thought that was his problem when he was about 18-20 months old. We were trying to switch him off of formula and at the same time he'd expressed an interest in the potty, so I got him a potty chair. He was HORRIFIED to find out THAT came out of him and our troubles began. When he was a baby, I suspected that he was associating stooling with pain/discomfort and would hold it.

We were able to use milk of mag... I do know that Dr. Carlos Milla --- formerly of U of MN has since gone on to Stanford -- sorry know it'd be a MAJOR trek. The family I met at great strides a couple years ago who use mucomyst go to the U of MN clinic....

 

[Ratatosk]

Ugh, I'd forgotten about poop holding. DS' daycare director thought that was his problem when he was about 18-20 months old. We were trying to switch him off of formula and at the same time he'd expressed an interest in the potty, so I got him a potty chair. He was HORRIFIED to find out THAT came out of him and our troubles began. When he was a baby, I suspected that he was associating stooling with pain/discomfort and would hold it.
<br />
<br />We were able to use milk of mag... I do know that Dr. Carlos Milla --- formerly of U of MN has since gone on to Stanford -- sorry know it'd be a MAJOR trek. The family I met at great strides a couple years ago who use mucomyst go to the U of MN clinic....