Hi all-need input if any of you, esp. the MDs, have any past experience with
this disorder. Have a 3 1/2 week old male born at my hospital, transferred to
a large medical center NICU, diagnosed with hyperglycinemia. I have found
little in the way of resource material-just a blurb here and there, and
nothing in the way of treatment. Currently just home from NICU, mom pumping
and putting to breast.  Weight gain was not as desired in NICU, so babe was
put on EBM (expressed breast milk) with fortifier. By 3+ weeks has surpassed
birth weight, so ok for now. Mom says babe's suck is much improved now, but
at testweighing in NICU, was not taking in much BM at all. We'll have to
check it again. Output good. Muscle tone improving-was very hypotonic. On
several meds, not identified yet. Seizures may occur with this, but he has
had none altho his EEG is noted as abnormal.
Questions: Should I expect this child to have a malabsorption problem?  Once
we establish that mom's supply is adequate (I don't see a problem here), do
we need to continue fortifier?  Any OTHER information I need to know
regarding this case as far as feeding management goes?  There are only 2
other cases reported in the state here, and prognosis is uncertain. NICU is
supposed to be sending more info, but not received yet. Ped and I need all we
can get! Thanks for your help:)

Denise Mollenkopf, RNC, IBCLC
Florida