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Subject:
From:
Lynn Carter <[log in to unmask]>
Reply To:
Lactation Information and Discussion <[log in to unmask]>
Date:
Sat, 22 Oct 2005 11:21:17 -0500
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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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