Hi there!  After many months of not being "active" I have a desparate need
to tap into all of your collective wisdom (although I'm still 'no mail').
I was just contacted by a doctor regarding a mom and breastfed baby that
are stumping our medical community.  The baby is now on an NG tube at 14
months and 19 lbs (BW of 7 lbs 11 oz)--up from only 15 pounds at 12 months.
This is the mother's 8th child (all successfully breastfed) with no
history of metabolic or GI disorders.  The child's growth history was
normal until 7 months.  The doctors have run the gamut of blood and other
tests on baby including a positive fibroblast test.

The doc has tentatively given a diagnosis of CPT1 fatty acid metabolic
disorder(there have only been 10 other cases since 1990).  Baby is not
crawling (nor ever has), and is extremely weak.  Mom is breastfeeding every
2-3 hours for 20-30 minutes (still leaks milk in large quantity) and giving
supplementary formula according to doctor's prescription (but baby vomits
this several times per day).  Baby will not eat solids (except chocolate
chip cookies).  Stools are normal--no signs of allergy either.  Exams have
not shown any problem with cardiac or pyloric sphyinctors, but baby has
abdomenal edema (?as in protein deficiency).  No one has performed a
cremacrit on or any tests on mom.  I have not seen this baby, but another
IBCLC at our local clinic has.

Any ideas?  Please email me privately as well as to list.  I'm  alive,
although still dealing with multiple medical problems and must have another
surgery soon.  I miss you all and hope to rejoin actively asap.
Chris

: )Chris Hafner-Eaton, PhD, MPH, CHES, IBCLC  email: [log in to unmask]   : )
: )HSR & Health Educational Consultant        voice/fax: 541 753 7340    : )
: )LLLLLLLLLLLLL**CHANGE THE WORLD, NURTURE A CHILD!**LLLLLLLLLLLLLLLLLL : )