I have e-mailed Kym privately, but now, I would like to ask a few
questions for my own information, in hopes that some physicians or others
with experience with cystic fibrosis or malabsorption syndromes might
answer for the sake of general knowledge. (Or else totally debunk my
suggestion to her about some things to suggest that her client discuss
with the doctor.)

I know that steatorrhea is the name given for stools containing fat (that
has not been properly digested).  Could the foulness be due to undigested
fat, or could undigested protein in stools also cause this? And if the
main or only digestion going on is the carbohydrate, could this be
connected to the gassiness, and pain?

Could this situation occur from automatic assumption on everyone's part
that what's going INTO the baby has to be totally responsible, portal to
portal, for this pain,  gassiness, and  for what's coming out? At some
point, would it not be reasonable to investigate what might be or not be
happening between portals? Is there a laboratory test that could be done
on a stool specimen to find out if undigested fat and/or protein are
present? I did not see anything to suggest any such investigation in
Kym's brief Hx.

Would a trial of 1 week with powdered pancreatic enzymes (such as Ku-zyme
HP, which I had to use for one of my children during a temporary period
of malabsorbtion and severe stool problems), stirred into EBM before
feeding, be a reasonable request to make of a physician,  to see if some
improvement results? The PDR mentions "it can be used as a presumptive
test for pancreatic malfunction. . . ."

If this child has any of this type genetic or malabsorbtion problems
causing  lack of pancreatic enzymes, it's sad, but much better in a way
to find out for sure than allowing the mom to go on punishing herself for
"having messed the baby's system up with grandma's suggestion", or
letting the doctor or anyone else cast aspersions on the breast milk as a
causative factor. Instead of jumping from one bright idea about low iron
formula (breast milk has that all scoped out naturally!) to another, such
as lactose free formula, it would seem that some type of testing  would
be in order.

Mom's breast milk might well be one of the reasons the baby is not having
worse health problems. I think it's remarkable that she has hung in there
for so long during this difficult time. What do others think?

K. Jean Cotterman RNC, IBCLC
Dayton, Ohio

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