Hi Lactnet.  I urgently need a LC in or near Cincinnati, OH, with some
knowledge of  or experience with metabolic disorders, for a mother of a
ten-week old girl with MCAD, which I understand is an inborn error of
metabolism that prevents normal digestion of medium chain fatty acids.
Mother has been told that baby needs to eat at least every three hours 24/7
indefinitely, otherwise may lapse into coma etc.

The baby took "a long time" to regain birth weight, is now under a pound
above bw, is colicky (mom is now off dairy, baby's supplement is nutramigen),
is increasingly aversive to both bottle and breast.  Mom is attempting to
nurse, pumping, bottlefeeding, etc etc.  around the clock.   Baby is (per
mom) essentially being force-fed, and mom is distraught -- she may not be
taking in technical info well, if her care providers have offered it, but in
any case she needs help making a plan both to make the breast more friendly
(which I could help with on the phone a bit) but also to get the baby the
nutrition she needs, which if she needs both to gain weight and also to avoid
fat may be challenging.  I just don't have the technical background here, and
the mom can't supply it, and it's time for a specialist.  IBCLC to the rescue
please!

I am nomail (still :<) so please email directly whether or not you reply to
the list.

Many thanks.

Elisheva Urbas
New York City (she's a friend of a friend)
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