Patricia: Good to hear from you. Do you have access to LEAVEN? In the
Aug/Sept 1998 issue of LEAVEN I authored an article "To Breastfeed or Not:
PKU, Galactosemia, Other Rare Disorders and Possible Misdiagnosis." This
short article includes a section as follows (what the heck, I'll retype
it):
"Galactosemia is also a metabolic enzyme deficiency/absence condition which
is transmitted through a recessive genetic trait. Riordan and Auerbach
state the incidence of galactosemia as one in every 85,000 births or about
47 infants per year int he US. Infants lacking a critical liver enzyme
(responsible for converting galactose to glucose) risk severe mental
retardation and liver damage. The symptoms of galactosemia are vague,
especially since the newborn appears normal.
However, soon after birth mothers report that their infants have profuse
vomiting, poor weight gain, wasting and lethargy. This usually prompts them
to seek medical attention and testing (or perhaps to hpone LLL first). AS
stated in the BAB p 308, this enzyme is heat-sensitvie and results may be
skewed if the sample sits in a hot mailbox. Failing to identify
galactosemia may have dire results, while false-positive can lead to
unnecessary weaning. Practitioners often err ont he side of weaning when
there is doubt. Thus, mothers should be encouraged to request an immediate
retest with special handling. Such testing may be difficult in areas where
there is no reliable way of protecting the sample from heat. There is no
intermediate or parital breastfeeding option for these infants. They must
be totally weaned promptly and fed a galactose-free formula such as
Nutramigen. A bottle or cup must be used; use of an SNS is not possible
because it could allow ingestion of human milk. Note that this is a VERY
different situation than PKU, so a clear diagnosis is critical." [pp
78-79.] There are 10 citations at the end of this article.
HOWEVER, after I authored this article, Betty Crase (then, the Director of
the Center for Breastfeeding Info, now at the AAP) emailed me to inform me
that there was NEW research (publishe about the same time as my article)
housed at the CBI (now run by Carol Kolar, I believe) stating that
Galactosemia is NOT an absolute contraindcation to bf. The solution
proposed in the new research (sorry, I cannot find the citation, but I bet
the CBI has it or you might try Betty Crase at AAP) leads us in the
direction of having moms pump formilk to reduce the galactose content and
then give baby hindmilk and perhaps giving supplemental enzymes. I haven't
had any cases like this since the article, so I'm sorry to say that I can't
be more specific. I do know that this is no longer a clear cut indication
to wean, as it once was.
Good luck.
--Chris Hafner-Eaton, PhD, MPH, CHES, IBCLC [log in to unmask]
INFANT CUISINE AND MOTHER CARE: Lactation Consulting, Perinatal Health
Education and Attachment Parenting Classes for parents and practitioners
RE:
> Chris:
> you mentioned in a post on lactnet that there is data to support some bf
> with galactosemia... can you point me in the right direction. I just had a
> call from an md who has a baby in the practice whose lab report has come back
> + for galactosemia
>
> thank you,
>
> Patricia
>
***********************************************
The LACTNET mailing list is powered by L-Soft's renowned
LISTSERV(R) list management software together with L-Soft's LSMTP(TM)
mailer for lightning fast mail delivery. For more information, go to:
http://www.lsoft.com/LISTSERV-powered.html
|
