"Targeted Nutriton Intervention"

[Joan E. Medlen]

Hello listmates:

I apologize for the cross-posting.  Not too long ago, someone posted a
basic note about a nutrition scheme targeted at famliies of children with
Down syndrome. As a Mom of a child with Down syndrome, I have been involved
in these discussions (and they are completely frustrating) for over 3 years
now. On the Down syndrome listserv, each time a parent posts with a medical
type of concern, this "Targeted Nutrition Intervention" ("tni") usually the
product, Nutrivene-D (sold with an unapproved nootropic medication), is
presented as the solution. Since some of you will have famlies who ask
about this intervention, I thought I'd share one of hte most recent
exchanges. A Mom was discussing her daughter's constant craving for food (I
know this mom well, she's an RN). The daughter is indeed an "obese" child
at age 4. Mom and Daughter are on their way to see a specialist in Down
syndrome who has done some research on metabolism and obesity to try and
help with the situation. First step toward a reasonable path. Another Mom
wrote and said she'd love to hear what the doctor says as her daughter is
always craving food too. The parent who is using the alternative therapy
writes back the following:

"There has been some theorizing that if a child  with DS suffers from
malabsorption of nutrients they would possibly still crave more food even if
they should be full. It's possible that a child on TNI with the extra
nutrients and digestive enzymes needed to help absorb the nutrients might
crave food less.
It's been said that a normal diet should be enough for a person with a
normal metabolism, but a person with DS doesn't have a normal metabolism and
therefore has special needs in this area."

I share this here simply to bring an awareness of the topic. If you'd like
to read some good essays on the topic, Dr. Len Leshin, a peditratrician
with a son who has DS has written quite a few that are even-keeled and take
an analytical look at the research without being accusatory. His articles
can be found at: http://www.davlin.net/users/lleshin/

He will also be a featured writer in Stephen Barrett's publicaton (but I've
forgotten the title!) on the topic.

Thanks for listening.

Joan Medlen, RD