Here is a case that is waaay out of my league:
Our neighbour N just came over in some distress over her friend's month
old baby girl. She has been diagnosed with an inability to metabolize
the amino acids, alanine, arginine and serine. We haven't succeeded in
finding anything helpful on the web. Can you direct us in any way?
The baby is vomitting, obviously, losing weight and seriously ill. As
far as we know the doctor gave no further information, nor advice, but
expects the baby to die. Actually, the doctor did say that the baby
can't have certain medications, but I understand didn't specify which
to avoid. She (the doctor) told the mother to get whatever information
she can from the web.
Can you give us any more direction? Do you know ANY kind of
formula the baby may be able to use? The three seem to be in quite
different categories of metabolism, Paul says, from what he finds on
the web. So far, we don't know what the blood work showed, but may be
able to find out. Unfortunately, the doctors here do not typically
give the patient detailed information about their condition, so maybe
the mother won't be able to tell us. (It's night here now, so we
couldn't easily phone till morning.)
The doctor is confident that Arginine, Alanine, and Serine are
elevated, but is not confident whether the other AA levels are normal
or not.
The lady was breast-feeding, but now is giving soy milk on her doctor's
advice.
The family is willing to go to Europe to get proper testing done.
Dale, do you have any suggestions how to locate a reliable clinic for
this?
Thank you for any help you can give us. In searching the web, I have
not found anything that corresponds to elevated levels of these three
AAs yet.
Do you think what I suggested is OK -- that they give the baby glucose
water for a couple days or so while they try to get to a better
facility? I thought it might help to clear the system of some of the
wastes building up and perhaps offset some liver or kidney damage.
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