Dear Jean,

I was one of those who posted about lactose intolerance. The article I
posted did mention primary lactose intolerance as being a "rare congenical
abnormality in baby's".
 http://www.breasted.com.au/web_articles/Lactose_article.htm
Personally, I new what they were on about, but through your post I realise
that actually the statement about primary lactose intolerance in this
article is lacking. They too, do not mention galactosemia as being a
genetically inherited disease. From my understanding "congential
abnormality" is very vague and does not necesarily have to be related to
genetics - my idea is that it can also include a birth defect (eg heart
anomally) where genetics is not know to play a role. However, I do believe
this article give a good view of secondary lactose intolerance which is
related to breastfeeding behaviour and can therefore be modified by for
example more frequent feedings, better latch etc.

I too know of someone who has two children both with galactosemia. With her
first baby she began breastfeeding her and in her own words "didn't realise
she was poisoning her". With the second she had to wait, with full breasts,
for the screening test to come back before she could feed him. Unfortunately
he too had galactosemia but as she said "I'm glad I know this time, so that
I don't poison him". These words stick in your mind for quite some years.
But on a happier thought, her two children are doing fine on their diets and
are now in school. They are so used to the lactose free diets that they have
been on since a few days old.

I've just looked up the following link (also couldn't remember the details)
and found it to be very informative. Maybe there are parent groups who can
also shed light on the topic??
 http://www.nlm.nih.gov/medlineplus/ency/article/000366.htm


Sara Bernard
The Netherlands.