increasing stomach pains and accidents

[Mommafirst]

<P>Alyssa is 5 and a half.  She's always had trouble gaining weight, so she has a feeding tube.  However, the only time they tested her she came back borderline pancreatic sufficient.  She was never high in the normal range (something like 500 for a non-CF person), but she was also not technically pancreatic insufficient (under 200 -- but most are under 100).   She had a 250, so we've always done enzymes.</P>
<P> </P>
<P>Well she is really struggling the last few weeks.  She's complaining a lot of belly aches and for a kid whose been completely indpendent in the bathroom for years, she's having way too many messy accidents lately.     I'm beginning to think that her pancreatic sufficiency is changing.  We already do creon, but low doses -- 2 or 3  6,000's.     Should I try adding more enzymes or would it be better to have her tested again?   Is it common for them to change their pancreatic functioning like this?</P>

 

[Mommafirst]

<P>Alyssa is 5 and a half. She's always had trouble gaining weight, so she has a feeding tube. However, the only time they tested her she came back borderline pancreatic sufficient. She was never high in the normal range (something like 500 for a non-CF person), but she was also not technically pancreatic insufficient (under 200 -- but most are under 100). She had a 250, so we've always done enzymes.</P>
<P></P>
<P>Well she is really struggling the last few weeks. She's complaining a lot of belly aches and for a kid whose been completely indpendent in the bathroom for years, she's having way too many messy accidents lately.I'm beginning to think that her pancreatic sufficiency is changing. We already do creon, but low doses -- 2 or 3 6,000's.Should I try adding more enzymes or would it be better to have her tested again? Is it common for them to change their pancreatic functioning like this?</P>

 

[Mommafirst]

<P>Alyssa is 5 and a half. She's always had trouble gaining weight, so she has a feeding tube. However, the only time they tested her she came back borderline pancreatic sufficient. She was never high in the normal range (something like 500 for a non-CF person), but she was also not technically pancreatic insufficient (under 200 -- but most are under 100). She had a 250, so we've always done enzymes.</P>
<P></P>
<P>Well she is really struggling the last few weeks. She's complaining a lot of belly aches and for a kid whose been completely indpendent in the bathroom for years, she's having way too many messy accidents lately.I'm beginning to think that her pancreatic sufficiency is changing. We already do creon, but low doses -- 2 or 3 6,000's.Should I try adding more enzymes or would it be better to have her tested again? Is it common for them to change their pancreatic functioning like this?<BR></P>

 

[gabster418]

My DD(10) is pancreatic sufficient but her doctors have told me that it could change at anytime.

 

[gabster418]

My DD(10) is pancreatic sufficient but her doctors have told me that it could change at anytime.

 

[gabster418]

My DD(10) is pancreatic sufficient but her doctors have told me that it could change at anytime.

 

[Ratatosk]

Could she be constipated or having issues with a partial obstruction? When DS was a baby, he'd have very loose stools, distended tummy and would decrease eating; however, an xray indicated he was full of stool. What we were seeing was what was what was able to slip thru. So we'd treat with milk of mag and get him cleaned out.

Is she allowing you to see her stools? Are they yellowish or not a normal brown? Do they appear to break apart easily in the toilet? Is there a ring of residue at the waterline in the toilet? Those things could indicate a need for more enzymes. IMO, try adding another enzyme or two and see what happens and in the meantime contact the clinic to see if you can get a fecal fat test conducted.

 

[Ratatosk]

Could she be constipated or having issues with a partial obstruction? When DS was a baby, he'd have very loose stools, distended tummy and would decrease eating; however, an xray indicated he was full of stool. What we were seeing was what was what was able to slip thru. So we'd treat with milk of mag and get him cleaned out.

Is she allowing you to see her stools? Are they yellowish or not a normal brown? Do they appear to break apart easily in the toilet? Is there a ring of residue at the waterline in the toilet? Those things could indicate a need for more enzymes. IMO, try adding another enzyme or two and see what happens and in the meantime contact the clinic to see if you can get a fecal fat test conducted.

 

[Ratatosk]

Could she be constipated or having issues with a partial obstruction? When DS was a baby, he'd have very loose stools, distended tummy and would decrease eating; however, an xray indicated he was full of stool. What we were seeing was what was what was able to slip thru. So we'd treat with milk of mag and get him cleaned out.
<br />
<br />Is she allowing you to see her stools? Are they yellowish or not a normal brown? Do they appear to break apart easily in the toilet? Is there a ring of residue at the waterline in the toilet? Those things could indicate a need for more enzymes. IMO, try adding another enzyme or two and see what happens and in the meantime contact the clinic to see if you can get a fecal fat test conducted.
<br />

 

[hmw]

I would wonder about both changing PS/PI as well as the possibility of an obstruction. Not to sound overly gross, but what does the stool look like when you clean up her accidents? Does it seem 'shiny' or greasy? I'd also try to get a look at what she's pooping before she flushes, too. It makes me wonder if she is having a hard time with resuming her tube feeds and needs more enzymes for them?

Re. the possibility of obstruction... you know we've been through a lot of that with Emily. We see frequent small loose stools w/urgency when she starts backing up, with nausea and belly pain. Sometimes when she gets bad I will vent her and I'll get bile... or I'll get back her dinner hours past the time she should have digested it. So that's a quick really easy test.

I would ask about a fecal elastase test. It's gross but non-invasive, and would likely be very helpful.

 

[hmw]

I would wonder about both changing PS/PI as well as the possibility of an obstruction. Not to sound overly gross, but what does the stool look like when you clean up her accidents? Does it seem 'shiny' or greasy? I'd also try to get a look at what she's pooping before she flushes, too. It makes me wonder if she is having a hard time with resuming her tube feeds and needs more enzymes for them?

Re. the possibility of obstruction... you know we've been through a lot of that with Emily. We see frequent small loose stools w/urgency when she starts backing up, with nausea and belly pain. Sometimes when she gets bad I will vent her and I'll get bile... or I'll get back her dinner hours past the time she should have digested it. So that's a quick really easy test.

I would ask about a fecal elastase test. It's gross but non-invasive, and would likely be very helpful.

 

[hmw]

I would wonder about both changing PS/PI as well as the possibility of an obstruction. Not to sound overly gross, but what does the stool look like when you clean up her accidents? Does it seem 'shiny' or greasy? I'd also try to get a look at what she's pooping before she flushes, too. It makes me wonder if she is having a hard time with resuming her tube feeds and needs more enzymes for them?
<br />
<br />Re. the possibility of obstruction... you know we've been through a lot of that with Emily. We see frequent small loose stools w/urgency when she starts backing up, with nausea and belly pain. Sometimes when she gets bad I will vent her and I'll get bile... or I'll get back her dinner hours past the time she should have digested it. So that's a quick really easy test.
<br />
<br />I would ask about a fecal elastase test. It's gross but non-invasive, and would likely be very helpful.

 

[Mommafirst]

Yes, when I've cleaned her up, it seems shiny and somewhat mucousy to me. She's become so private, but i will try and get a look. I am going to change our routine with enzymes for the feeding tubes, because you are right, she may not be responding well to the renewed tube feeds. I'm going to keep track, and see if I can figure a pattern.

 

[Mommafirst]

Yes, when I've cleaned her up, it seems shiny and somewhat mucousy to me. She's become so private, but i will try and get a look. I am going to change our routine with enzymes for the feeding tubes, because you are right, she may not be responding well to the renewed tube feeds. I'm going to keep track, and see if I can figure a pattern.

 

[Mommafirst]

Yes, when I've cleaned her up, it seems shiny and somewhat mucousy to me. She's become so private, but i will try and get a look. I am going to change our routine with enzymes for the feeding tubes, because you are right, she may not be responding well to the renewed tube feeds. I'm going to keep track, and see if I can figure a pattern.

 

[hmw]

Shiny sounds to me like fat. I know that is what we see, anyway... and when enzymes are working well even if it's still somewhat soft and thick it's more dull in appearance, not shiny. Hard to describe but a clear difference. And they stay much more formed in the toilet and sink. If she'd agree to just not flush so you can check when she is done that would help and be a more minimal invasion of her privacy.
<br>
<br>Enzymes during the feeds ...if she is getting a full feed (she does not when we are dealing with obstruction) we do a meal equivalent at the start and a snack's worth halfway through and that works for her. And just as important that means I don't lose sleep!! We also found that Emily tolerates a pretty high rate and getting the formula into her faster seems to help w/the enzymes- they can work more effectively. After going up really slowly over a long period we found she can tolerate 100ml/hr. Anyway, they said if that works better for sleep purposes it's more effective that way anyway than doing the 2nd dose at the end.
<br>
<br>I know kids can start PS. Emily was such a chub as a baby and young toddler- she had ROLLS on those thighs and the cutest belly. She didn't stop gaining until she was 3-4yrs old- over the course of a year it was a gradual process but then it was quite dramatic- growth just stopped entirely.

 

[hmw]

Shiny sounds to me like fat. I know that is what we see, anyway... and when enzymes are working well even if it's still somewhat soft and thick it's more dull in appearance, not shiny. Hard to describe but a clear difference. And they stay much more formed in the toilet and sink. If she'd agree to just not flush so you can check when she is done that would help and be a more minimal invasion of her privacy.
<br>
<br>Enzymes during the feeds ...if she is getting a full feed (she does not when we are dealing with obstruction) we do a meal equivalent at the start and a snack's worth halfway through and that works for her. And just as important that means I don't lose sleep!! We also found that Emily tolerates a pretty high rate and getting the formula into her faster seems to help w/the enzymes- they can work more effectively. After going up really slowly over a long period we found she can tolerate 100ml/hr. Anyway, they said if that works better for sleep purposes it's more effective that way anyway than doing the 2nd dose at the end.
<br>
<br>I know kids can start PS. Emily was such a chub as a baby and young toddler- she had ROLLS on those thighs and the cutest belly. She didn't stop gaining until she was 3-4yrs old- over the course of a year it was a gradual process but then it was quite dramatic- growth just stopped entirely.

 

[hmw]

Shiny sounds to me like fat. I know that is what we see, anyway... and when enzymes are working well even if it's still somewhat soft and thick it's more dull in appearance, not shiny. Hard to describe but a clear difference. And they stay much more formed in the toilet and sink. If she'd agree to just not flush so you can check when she is done that would help and be a more minimal invasion of her privacy.
<br>
<br>Enzymes during the feeds ...if she is getting a full feed (she does not when we are dealing with obstruction) we do a meal equivalent at the start and a snack's worth halfway through and that works for her. And just as important that means I don't lose sleep!! We also found that Emily tolerates a pretty high rate and getting the formula into her faster seems to help w/the enzymes- they can work more effectively. After going up really slowly over a long period we found she can tolerate 100ml/hr. Anyway, they said if that works better for sleep purposes it's more effective that way anyway than doing the 2nd dose at the end.
<br>
<br>I know kids can start PS. Emily was such a chub as a baby and young toddler- she had ROLLS on those thighs and the cutest belly. She didn't stop gaining until she was 3-4yrs old- over the course of a year it was a gradual process but then it was quite dramatic- growth just stopped entirely.