I've been working with a mum and baby who have developed a problem I've never
seen before, so thought I run it past you all.  I have mother's permission to
post.

I've posted about this 4 month old young man before.  Osteopath is working on
his very painful palate, neonatologist has ordered chromosome testing, is
checking for different syndromes, and other physical and developmental
problems. Because of various problems, including baby's slow weight gain and
hypotonicity, and mom's health problems, Mom is pumping and feeding EBM
(fortified with ABM at dietitian's suggestion).

Essentially, the issue has always been that he is not a good feeder.  He's
never been happy with anything in his mouth, and after several weeks of suck
training and CST, he's still a long way from having a "normal suck".  But, at
the moment, we are more concerned because he simply refuses to eat when he is
awake.  Breast, bottle, cup, syringe, spoon, dropper, straw, SNS, habermann,
it makes no difference; this little guy simply doesn't want milk in his
mouth.  He actually spits it out! (Lest you think I'm crazy, allow me to note
that this has been over a 4 month period, and not all of these interventions
were my suggestions!) We've tried different feeding positions, temperatures,
the tub, everything I can think of to see if it's an environmental or
physical problem.  He can go from happy and smiling one minute to cross,
crying and very agitated the next, simply by presenting the food.  He fights
the feeder, no matter who it is, and yesterday I watched him knock the bottle
out of mum's hand and send it flying about 4 feet! As soon as you take the
bottle away, he calms down, and interacts with Mom. After he pushes the food
away, he doesn't cry because he's still hungry.  He's just totally content to
look around, and resume whatever he was doing.  He should be hungry, but
isn't, and if left to his own devices, will easily go 4 or more hours between
feeds. At first I thought the feeding refusal was because of his suck
problems, palate sensitivity and other physical conditions, and it still
probably is at least in part, but now I'm not so sure.  I have observed this
several times, and mum describes this as an every-feeding event.  It takes
over an hour to feed this baby, who is 4 months old, 30-50 ml. He takes a sip
or two, then fusses, Mom puts him down for about 10 minutes waits for him to
demand attention from her, then he'll take another sip or two.

But here's the twist.  When he's asleep, he will take about 120 ml from a
bottle, in about 20 minutes.  It's like if he isn't truly aware of what's
going, he'll drink it, otherwise forget it.  He was doing this before the ABM
was introduced into the mix, so it's not the taste as far as we can tell.

I did a literature search on Medline and discovered that yes, infants can be
anorexic and have other psychiatric issues, and am doing some reading, but
has anyone else ever seen this?  I've been worried about his little guy for
weeks, and it's only getting worse.  I'm at my wits' end; imagine how Mom is
feeling.  Thanks for your help.

Barbara Ash, IBCLC
Canberra, Australia

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