I'm currently working with a little one tentatively diagnosed with
Beckwith-Wiedemann syndrome who is slow-weight gain.  I've researched the
info on the syndrome (visceromegaly, macroglossia, anterior abdominal wall
defects, midfacial hypoplasia, etc.) and we are correcting the feeding
pattern.  (Was q 4 hrs. X 7 mins. and sleeping 7+ hrs. at night).  We're also
working on finding the ideal positioning to keep the enlarged tongue from
occluding the airway during feeds and when at rest.  If you've worked with a
baby with BWS, please contact me privately.  TIA

Kathy Parkes, RN, IBCLC
President, The Lactation Connection (TLC)
www.tlc4moms.com

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