Hoping to find some help here!
I have a mom who's baby has Nephrogenic Water Diabetes Insipidous. She states
that All the words are important as there are many different types.  Baby was
transfered from our Level 2 nursery to a Level 3 soon after birth and stayed
in a week. Mom has two brothers who are in their 50's that also have the
disease which is carried by females and affected by males.  Mom is frustrated
that no one she has talked to seems to know much about this disease, or how
to manage her son.  At this time she is not being allowed to put him to
breast, but may feed him EBM.  With this disease, it is important to give the
baby an extreme amount of fluids to keep the electrolytes from building up
too high.  At this time ( he is about 10 days old) he gets 2-3oz of EBM every
2-4 hours, PLUS 3-5 oz of water in between feeds!!  She says he is extremely
thirsty and has no problem handling this.
   With her permission I am posting her story to see if any of you have ever
dealt with this disease or know of any Drs that may specialize in it.  You
may e-mail me privately and TIA for the info!
Claudia Globerger RN, IBCLC  Gurnee, IL

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