Re: Seeking practical Application

[Guest guest]

I applaud your email, . You hit the nail right on the head for

me. We are all looking for practical applications. Beth W. - we

would love to hear the practical things you do at home with your RSS

daughter -- not the cut and paste of documents. For example, does

your daughter wake up hungry? What does she eat on a regular basis

that she likes and you can get into her? What does she eat for

snacks during the school day? I, too, am trying to reduce trans

fats and gain a more holistic nutritional approach for my children.

I seek ANY advice on the following things:

Can anyone help me? At stores like WHole Foods -- there are 5

different brands of " goldfish-type " snacks, that lack the trans

fats. Which one tastes the best? loves the high-protein

(but also high complex carbo) product CLIF bars -- but they are

expensive. Any alternatives? ( HAS to have complex

carbohydrates because of her blood sugar and high activity level).

A low carbo diet is simply not possible for her -- we have consulted

with an alternative physician who also agrees.

I have been able to switch both kids now to 100% whole wheat bread

(the good stuff) but it did take 6 months.... slowly moving from

potato bread to butter top wheat (still refined) and on and on.

Macarani and cheese. A BIG hit in our household. But Kraft clearly

isn't ideal. But my son HATES wheat pasta. And I tried the Trader

Joe's brand " Annie's Organic Mac and Cheese. " Tyler took one bite

and said forget this.

(My non-RSS son is very thin and active as well -- gentically

engineered - my 40 year old husband is 6'4 " . 185 pounds and 6% body

fat.... sadly, I am not the same).

We do very well at giving protein with breakfast and virtually every

meal. Spoonfuls of peanut butter have become a great afternoon

snack.

But I NEED HELP ON CARBO SNACKS. The organic cheddar popcorn has no

trans fats, and loves those. But most of the easy carb

snacks are bad ... but and Tyler have to both have snack

bags on their desk at school, and we have some athletic practice 3

evenings or more a week.

Can anyone help me??? Salem

>

> 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 .

[Guest guest]

hey jennifer!!!

i have just started eating the quaker quakes rice cakes, the carmel

has no trans fat and are 100 cal, the cheddar cheese ones also no

trans fat and are 90cal (special note they are only 1 point for 7

for us weight watchers people on here and jodi they taste great i

love the carmel ones!!!) and at sam's clug you can get a 18-pack of

snack size bags for like $7. also those nabisco 100 cal. snack

packs have no trans fat and neither do the peppridge farm gold fish

(both of which walmart sells at a better price as compared to the

grocery stores. christopher loves the oreo ones!!!

hope this helps!!

jodie c