Seeking practical Application

[Guest guest]

Dear Joe Beth,

As a novice nutritionist of late and a tree-hugging hippie by

choice, I find your advice fine and dandy...for me and my diet. I

am from the State of Oregon. I was raised by parents who believed

that sugar was evil and that whole grains, oatmeal and pumpernickle

bread were the only healthy choices available. I've been doing the

organic, low carb lifestyle long before it was trendy. So, once

again, I applaud your advocacy for a life style that has been

beneficial for you and your family. Especially your daughter with

RSS.

I agree with you that nutrition is linked to every systen in our

bodies, even the endocrine system. I agree that supplementing our

children's diets with missing nutrients (Omega 3's) is vital to

good, overall health. We give Connor a dose of Cod Liver oil 3x a

week and supplemant his yougurt with Linseed oil.

Let me inform you about the unseen angst that you have touched upon

unknowingly. In the RSS genotype, there are several phenotypes

present. A severe phenotype of RSS includes but is not limited to

skeletal asymmetry, gut dysmotility, GERD, Hypoglycemia, aspiration

pneumonia, insulin resistance, precosious puberty, ADD and possible

developmental delays due to malnutrition in the first two years of

life. A mild phenotype of RSS may have to deal with only one or two

of these issues.

As a parent with a child who had to be taught how to swallow; as a

parent with a child who turned into a skeleton before her eyes; as a

parent whose child see's on average 5 different specialist's not to

mention the therapists who do work on Connor, it is simply not

feasible to feed Connor the foods you suggest with your many

studies. The only way our kids will benefit from " Life Without

Bread " is if they can chew and swallow on a regular basis. Therein

lies the angst. I would love to rely on diet alone to feed and fix

my son's syndrome. However, he is genetically programmed to

starve. In my unmedical opinion, that is RSS in a nutshell. They

are the " Thrifty phenotype " in the evolutionary chain. " Cave

Babies " is what Dr. H. affectionately calls our kids. I can laugh

at that now. THere was a time when I could not. So, when I read

through your posts, I try to fathom a way to apply this knowledge to

my son. I can't do that without your help.

Unless....

CAn you provide me with some receipes that can be easily chewed,

have moderate glycemic indexes, can be absorbed over a slower amount

of time in his gut and are low in refined sugars? We have no food

allergies or dual diagnose's to deal with in our household. I am an

excellent cook and will try anything once, especially if it can

bring on the results that your daughter is experiencing. I would

love to not have to give my son daily injections if a combination of

certain foods will stimulate his endocrine and nutritional pathways

that are compromised in this syndrome.

Can you help?

Mom to Graham 8; Cameron 5; Connor 2 RSS, Kyphosis, G-Tube,

Periactin, Prevacid, Zantac, GH in two weeks .