Keep us posted.  I am not esp. up on the cardiac issues, and maybe the EEG
does definitively rule that out.  I'm cc-ing Cathy Genna (who typically
knows the answer to this type question).  The low tone is hugely influential
in feeding issues.  You have to have adequate lip, cheek and tongue tone to
generate enough negative pressure (suction) to create seal.  If you have a
leaky seal, you can't keep the breast in the mouth, can't generate enough of
a pressure differential to keep the milk flowing from breast into mouth
(after the letdown supsides, anyway).  The tone may improve, depending upon
the severity of the DS.  Maybe early intervention with a PT would help.  The
breast milk is beneficial, and the attempts at sucking are beneficial.  I'd
do oral strengthening exercises -- playing tug-o-war with a soft, gel or air
filled pacifier.  Stroking around the lips, putting little finger at the
corners of the mouth to elicit jaw closing (chewing) reflexive motions that
will strengthen the jaw.  Let the baby suck on round, hollow silicone
pacifiers, and gradually increase the thickness of the pacis used so baby's
tongue has to exert increasingly more pressure to compress and suck on the
paci.  The round shape helps the tongue move into a central groove pattern.

Barbara Wilson-Clay, BS, IBCLC
Austin Lactation Associates
LactNews Press
www.lactnews.com
----- Original Message -----
From: "Linda Pohl, IBCLC" <[log in to unmask]>
To: "Lactation Information and Discussion" <[log in to unmask]>
Cc: <[log in to unmask]>; <[log in to unmask]>; <[log in to unmask]>;
<[log in to unmask]>; <[log in to unmask]>; <[log in to unmask]>;
<[log in to unmask]>; <[log in to unmask]>
Sent: Saturday, May 10, 2003 9:11 PM
Subject: RE: Increasing Gain/Caloric Content of Milk


> Thanks to all for the feedback on the lactoengineering idea to increase
> growth rate for a baby with Down syndrome.  Thanks to all 8 who responded.
> It is wonderful to have access to some of the great minds in lactation.
It
> also helps to have people to shoot holes in potential theories (Thanks
Jan.)
>
> Barbara Wilson-Clay writes:
> The cardiac issue may not be totally ruled out (I've seen people fooled
> before and miss heart defects which only got revealed when babies were so
> obviously failing to thrive).  Also, sometimes if their tone is really low
> they will have difficulty with swallowing, and feeds will be very
laborious
> with fatigue setting in before they can finish.  Sometimes the babies will
> have some silent aspiration as they fatigue during a feed.  This will
cause
> them to shut down and limit their intake.  Or the Down Syndrome could be a
> red herring and the baby may be self-limiting due to something more common
> such as reflux.
>
> Have you seen heart problems still come up after an EKG?  Baby has been
> evaluated by a cardiologist but I am not familiar with how reliable these
> tests are.  Baby is VERY low tone, hence long feedings with a Haberman and
> inability to direct feed from the breast or a standard bottle.  I will
look
> for aspiration.  I did not even think of that.  Thanks.  I will also keep
an
> eye out for reflux.
>
> Rachel Myr writes:
> Heating breastmilk to reduce the water content could be literally playing
> with fire.  Condensed cow's milk can cause life threatening electrolyte
> imbalance in babies, as can formula that is too concentrated.
>
> I had not considered that decreasing water may cause an electrolyte
> imbalance.  (Please do not look too closely at the imprints my head makes
as
> it bangs against the computer screen. :) )
>
> Several people wrote about special growth charts for DS babies.  Thanks.
I
> will forward them to mom.
>
> A couple people mentioned the need for attachment parenting and suggested
> getting baby to breast more often.
>
> Mom is very adept and active with attachment parenting.  Baby is unable to
> milk the breast.  Bottle feeding is this baby's reality until his tone
> improves to the point that he is physically able to milk the breast.
Right
> now, putting baby to breast will be likely to decrease growth.  Mom is
> offering the breast for comfort between feedings and baby is barely able
to
> manage to suckle the breast for comfort.
>
> Last Jan writes:
> I was unaware that there was a difference in amount of protein or
> carbohydrate in the foremilk vs. the hind milk.  I was under the
impression
> that both protein and lactose were constant throughout the feed, though
> would go down in percentage (but not amount) as the fat content increased
> during the end of the feed.  But that doesn't mean there is any less
protein
> in the hind milk.
>
> Jan, I had not suggested that fore milk and hind milk might have differing
> amounts of protein and I knew that carbohydrate content does not change.
> What I was suggested was if the cream was spun off, there should be more
> protein in the skim than the cream portion.  Logic would dictate if there
> was more cream in the fraction of milk there should be less protein per
ml.
> Well, of course when you wrote what you did, I started to look for
> references to support the "logic."  I looked, and looked, and looked.
What
> I did find was almost NO references to the protein content in the skim
> fraction vs. the cream fraction until I came across an older text that I
had
> not read thoroughly yet called "The Lipids of Human Milk" by Robert G
Jensen
> c.1989.  On pp. 158-159 there are two tables that show the amount of
lipid,
> phospholipid, cholesterol and protein in the whole, skim & cream fractions
> of milk.  The tables are referenced back to a study by Patton, S & Huston,
> GE,  Membrane distribution in human milks throughout lactation as revealed
> by phospholipids and cholesterol analyses, J Pediatr. Gastroenterol.
Nutr.,
> 5, 602, 1986.  It turns out there is actually slightly more protein in the
> cream fraction than the skim fraction.  Go figure!  (Again more imprints
as
> my head bangs against the computer screen.)
>
> Thanks to all who responded.
>
> Linda Pohl, IBCLC
> Phoenix, AZ
>

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