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Date: | Thu, 3 Feb 2000 14:58:34 EST |
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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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