Originally Posted by velcromom
There's also a condition where the infant's body cannot utilize the particular kind of fatty acids contained in breastmilk, due to some insufficiency of the pancreas I think... there is a mom here whose son has this condition. I can't think of what it is called. But like real galactosemia, it is very rare. And apparently very difficult to diagnose as well.
That's my son!
His condition is called Severe Exocrine Pancreatic Insufficiency. His pancreas produced none of the 4 enzymes necessary for fat digestion. We still don't know what caused this, and have yet to recieve a full diagnosis for him. It took months to figure out why he was losing 3 oz a day. Usually children w/this condition have CF, but he doesn't. And usually enzyme supplements will help w/fat digestion, but for him they didn't. So he had to be on a higly specialized formula w/medium chain fats instead of long chain fats (he still had difficulty digesting even the medium chain fats which are considered to be already broken down, but at least he started gaining a little bit).
But even with Severe Exocrine Pancreatic Insufficiency there is often a way to BF successfully if the enzyme supplements work. I wish they would have in our case, but they didn't. However, the enzyme supplements not working is very rare. They dr.s at Stanford decided that our son is "baffling". He started producing some enzymes at 8 months & I tried relactating (he wouldn't latch but I pumped & gave it to him) & then got pg w/DD & am now BFing her. Now at 22 months he is producing adequate enzymes, but still doesn't gain weight very well, so obviously something else is going on too. Sorry for such a long post. As velcromom said my son's condition in rare, but it does happen.