Hello, Teresa.
       Prader-Willi Syndrome is a multi system disorder characterized by
neonatal hypotonia (floppy baby), later obesity, hyperphagia (constant
eating/constant feeling of hunger).  Symptoms can run along a continuum of severity, much
like in Down Syndrome.  Most people with P-W are mentally handicapped, but I
know of one person who was not diagnosed until she was studying the condition
in medical school and realized she had the traditional body shape.
       This syndrome is a two-stage problem.  During the first stage, the
baby has very slow weight gain.  It takes 2 calories to the normal baby's 1
calorie to gain weight.  Well, could I have said that any more awkwardly?  It takes
twice as many calories as the normal baby to gain the same amount of weight
gain.  It is particularly important to get the hindmilk into these babies, and
they may need supplementing.  Because they are hypotonic, mom may need to pump
the hindmilk and get it into the baby with an alternative feeding device.
The first stage usually lasts 12-24 months.
       Once the baby reaches the second stage, he is constantly hungry and
will eat everything in sight.  This child's body never gives him the signal that
he is full.  These children will become obese.  Parents often have to resort
to literally chaining and locking the refrigerator and cabinets/pantry.
School can be difficult because these children will frequently go through the trash
cans to eat the food other children have thrown away.  Children with P-W will
not grow much in length unless they receive growth hormone shots.
       Unfortunately, this family most likely has a difficult road ahead of
them.
       Dee

Dee Kassing, BS, MLS, IBCLC
Collinsville, Illinois, in central USA

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