Despite the fact that this seems to affect one child in a thousand,
there are no posts about it since 1998 in the archives and those four
posts referred to a mother with the diagnosis.  I have mother's
permission to ask the list for input.

I'm interested in hearing from anyone with experience with babies with
Noonan's.  Working with a baby who might have it, but diagnosis takes
time to confirm so won't know for some months (genetic test that takes
time).  This baby, fortunately, doesn't have any cardiac problems but
may have reflux and at 6 mos started to falter in growth.  There was
concurrent infection at the time, since resolved, but growth still not
on track.   Exclusively breastmilk fed from birth and BF from about 2
months.  BF took time and work to establish, there were numerous
significant obstacles along the way, baby is now very enthusiastic
about BF and mother would very much like to continue for a long while
yet.  Baby has been noted to have low muscle tone in upper body/neck
so BF has always worked best with baby reclining rather than more
upright.  High palate has been noted but this was not one of the
problems in getting BF established at the outset.

Discussion with the treatment team centers around getting baby's
energy needs met.  I need to know whether Noonan's is accompanied by
metabolic disturbances which might require replacing breastmilk in the
child's diet with something else, or whether the child simply needs
more food than s/he can consume by own efforts.   I am at best an ad
hoc auxiliary member of the treatment team and need to tread
carefully, so I feel I should make sure I have grounds for whatever
arguments I help mother put forth for continued BF.  It seems such
arguments are necessary :-(

Rachel Myr
Kristiansand, Norway

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