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Fri, 12 Sep 1997 15:37:39 EDT |
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800-FIGHT CF (USA)
McNeil Pharmaceuticals puts out a *very* informative booklet, _Intro to
CF for Patients and Families_.
Jan Ellen Brown gave an excellent session on cf and bf at the last ILCA
cnf in Scottsdale. She said about 20% of cf babies suffer from GER.
She suggested the following as ways an LC can support a mother of a baby
w/cf:
--recognize stages of maternal grief
--clarify nutritional goals and help experiment w/enzymes
--run interference w/ other members of the health care team who may
discourage bf (mothers are unwilling to antagonize HCPs b/c they view
them as their baby's lifeline)
--share written materials; put in touch w/other mothers with children
w/cf
--test weigh as indicated; supplementation with donor human milk or
manufactured baby milk; bottom limit of weight gain; once HCPs see
how much the baby is taking,
HCP support for bf often rises
--reflect issues unrelated to cf: growth spurts, night waking, sheltered
feeding sessions, etc: normal bf management
--encourage self-care for the mom: her focus is (understandably) on the
baby
--recognize financial constraints/insurance issues
--refer to "baby with cf" rather than "cf baby" (he is a baby first, not
a disease);
NEVER call them cystics <shudder>
--listen.....listen.....listen
Karen Zeretzke, MEd, IBCLC
Baton Rouge, Louisiana
[log in to unmask]
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