Hi,

I am involved with a mother who has recently been told to permanently wean
her 5 mo. old daughter.  This situation is as follows:  the baby (f) was
born in January and weighed a little over 7 pounds.  She experienced good
weight gain (was up to over 16 pounds at 3.75 mos.) though she was
constantly fussy.  During this period she was not developing entirely
normally (specifically, she was not trying/able to hold her head up).  She
cried most of the time, a very low pitched, sort of moaning (the best I can
describe it) and did not seem quite right.  The mother did not want to face
the fact that something might be wrong with the baby and so did not take the
baby to be examined by a doctor.  Over a 4-6 week period the baby went on
several nursing strikes and began to lose weight, though the mother really
didn't notice anything wrong.  At 5 mos. the mother thought the baby may
have an ear infection or possibly "something else" wrong and took the baby
to the doctor (one who had never seen this baby before).  Examining the
baby, they found she was down to 12 pounds.  Since the dr. didn't have any
kind of baseline for the baby, he didn't understand the seriousness of this,
though he did discuss her lack of muscular development and made a comment
that his first thought was CP.  The baby continued to deteriorate over the
next day and a half and the mother took baby to a different doc closer to
home.  This doc immediately sent baby to the university hospital with
facilities to handle serious cases.  The baby was hospitalized for a week,
where immediately they had the mother temporarily wean the baby to formula
so they could rule out metabolic disorders.  The baby was dehydrated and
immediately began improving when given nourishment.  This baby was put
through every concievable test, with negative results.  They labeled her as
failure to thrive (though she had been thriving until almost 4 mos. of age)
and began looking for a metabolic disorder.  They ruled out galactosemia,
but instead said that in all probability the baby has an ultra-rare
metabolic disorder which does not allow her to process a certain enzyme in
the breastmilk.  This is then stored unprocessed in the brain, inhibiting
proper muscle development (thus the fact that she cannot lift her head).
They told her to go home and wait a month to see if the baby started to
develop normally on the formula.  They (the drs.) did not know the name of
this ultra-rare metabolic disorder, but said that she would have to go to
one of three hospitals nationwide to pursue it.  The mother has completely
weaned the baby.  I have looked through all of my texts for any metabolic
disorder other than galactosemia that would require total weaning from the
breast to no avail.  Has anyone EVER heard of this and if so, can you give
me a name?  I really would like to have this info. for future reference.  I
must admit that I was quite skeptical, especially since they could not give
this disorder a name.  (I hope that this is coherent enough.)  Any help on
this would be greatly appreciated.  (sorry for such a long post.)

Carrie Otterson
LLL Leader

p.s. since on the formula the baby has obviously gained weight and has
become a bit more responsive to the parents, but still has that same kind of
cry most of the time.

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