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Date: | Sat, 13 May 2006 21:22:56 +0200 |
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Hi to all of you,
(I feel bad only asking and really rarely having the possibility to
answer/react.. I am spending my time improving my knowledge and have at
least pleasure to share your experiences and skills; passing the exam this
year would give me time to continue improving my knowledge AND participate
as answering)
I have two moms, whose babies have Prader-Willi syndrome;
For one of them, hypotonia is a real problem and we are at the moment trying
soft-cup of Medela because feeding to breast is too hard for the baby; the
Mom pumps her milk and the baby receives only her breastmilk; maybe she is
lucky to have twins -because the other twin ("normal") sucks well and help
stimulating; so with this Mom, we are incorporating elements found on the
Breastfeeding Atlas DVD (Prader-Willi syndrome, rousing a baby, low tone
baby etc.);
For the other Mom and her "single" baby, hypotonia does not seem to be THE
problem but he shows not
sign of hunger; he never asks; when he accepts, he takes small amounts of
bottle
proposed and he has nasogastric tube to "complete"; we gonna try soft-cup,
maybe easier than bottle;
It is sure that lack of appetence is one of Prader-Willi effects; I have
thought of inducing an element of pleasure and well-being introduced by the
mom, during the feedings so that maybe for the will of pleasure again, the
baby would ask or take a feed... amongst your experiences, have you tried
out this kind of element? or is it a foolish idea of mine? I have noted
elements of pacing during bottle feeding which could be tried with either
bottle or soft-cup;
And how have you managed children who are really not interested by eating?
(nasogastric tube will be replaced by gastric tube if the little boy does
not feed better); it is well beyond a weakness in sucking...
Have you also noticed if there could be a different behavior of the child in
front of different milks: the second child, receives formula; if I was
pretty sure breastmilk would attract/charm the baby, maybe I would talk
about inducing a lactation or try something with the pediatrician and a bank
milk;
Breast regards,
Françoise Coudray
(ADJ+ = breastfeeding twins and +)
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