Keep us posted.  I am not esp. up on the cardiac issues, and maybe the EEG
does definitively rule that out.  MaybeCathy Genna or one of the docs can
comment on this.
The low tone issue is hugely influential in feeding issues.  You have to
have adequate lip,
cheek and tongue tone to
generate enough negative pressure (suction) to create a seal at breast.  If
you have a
leaky seal, you can't keep the breast in the mouth, can't generate enough of
a pressure differential to keep the milk flowing from breast into mouth
(after the letdown supsides, anyway).  The baby's general tone may improve,
depending upon
the severity of the DS.  Maybe early intervention with a PT would help.  The
breast milk is beneficial, and the attempts at sucking are beneficial.  I'd
do oral strengthening exercises -- playing tug-o-war with a soft, gel or air
filled pacifier.  Stroking around the lips, putting little finger at the
corners of the mouth to elicit jaw closing (chewing) reflexive motions that
will strengthen the jaw.  Let the baby suck on round, hollow silicone
pacifiers, and gradually increase the thickness of the pacis used so baby's
tongue has to exert increasingly more pressure to compress and suck on the
paci.  The round shape helps the tongue move into a central groove pattern.


Barbara Wilson-Clay, BS, IBCLC
Austin Lactation Associates
LactNews Press
www.lactnews.com

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