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 +) 

             ***********************************************

To temporarily stop your subscription: set lactnet nomail
To start it again: set lactnet mail (or digest)
To unsubscribe: unsubscribe lactnet
All commands go to [log in to unmask]

The LACTNET mailing list is powered by L-Soft's renowned
LISTSERV(R) list management software together with L-Soft's LSMTP(R)
mailer for lightning fast mail delivery. For more information, go to:
http://www.lsoft.com/LISTSERV-powered.html