Re: Re: oily stools again/Sara

[Guest guest]

Sara, brilliant! Love, n

Re: oily stools again

The GI doc seems to think that his gene mutations could indicate

pancreatic sufficiency and his fecal fat stool test was really low.

I think I have figured out why the fecal fat stool test may have

been unusually low. They told me to collect the stool for 72 hours

in a container. By removing his stool from the diaper, I think I

was removing the stool but not the fat. The fat is absorbed into

the diaper. I might need to bring this to the GI docs attention.

It was done before we started seeing him.

We have tried Ultrase and now we are on Pancrecarb. We used

anywhere from one enzyme per meal up to six. We have been

increasing and decreasing enzymes for eight months.

Zach's cf doc says that 90% of the time patients start enzymes and

the problem is fixed. Zach has had either all yellow mushy poop or

formed poop with lots of oil. He has gone from the 10 pecentile for

weight in August to 5th pecentile in October. He just can't gain

weight unless he is on antibiotic for an ear infection. Then when

he goes off the antibiotic he loses the weight he gained. Weird.

He will be getting tubes in his ears soon, so hopefully no more ear

infections.

It is all so confusing. Hopefully the test results will come back

quickly.

Sara

> I think you are right Sara. Have they tried several different

types

> of enzymes as well as doses? The greasy stuff is not normal. What

> makes themthink he is pancreatic sufficient? (Sorry if I missed

this

> info. I may have skipped over it during my hiatus)

> Lenora

>

> >Hi Everyone,

> >Zach's cf doc agreed with his GI doc to try going without enzymes

to

> >see if Zach could be pancreatic sufficient. We won't have the

> >elastase stool test results for two weeks. This morning Zach had

a

> >normal sized formed brown bowel movement and an enormous amount of

> >oil in his diaper. I called the GI doc to tell him I was going to

> >give him enzymes again and his nurse said the GI doc preferred

that

> >he not be on enzymes, but it was ok to try them again. I am so

> >confused. What is this oil if it is not fat malabsorption? I

have

> >a strong suspicion that Zach is pancreatic insufficient and we

just

> >haven't found the right dosage or right enzymes yet.

> >Sara - mommy of Zach 20 months

> >

> >