Re: Seeking practical Application ()

[Guest guest]

Hi ,

You certainly have been ahead of the curve.

Our doctor does not consider to be a severe phenotype, she

has a little asymmetry problem, but did have a fairly major gut

dysmotility, GERD, hypoglycemia, insulin resistance, and ADD to

mention a few.

I'm not sure if this would be a possible solution for you but

I'll throw it out there anyway. I would suggest, especially with

your child's severe situation, that you see a doctor who

specializes in this type of diet. I see you live in Oregon and

I'm not exactly sure how far you are from San Francisco, but

Cowan MD () would be my top pick.

Cowan just recently published an excellent book called " Fourfold

Path to Healing " , a portion of it can be found on his web site

(http://www.fourfoldhealing.com/Feeding_Our_Children.htm ). Go to

this link, he does a great job of explaining his general diet for

children, breaking it down into several age phases. I also suggest

looking through the rest of his web site it is a great resource of

further nutritional information.

I hope this gets you started.

Beth

P.S My husband is Joe.

>

> 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 .