Awesome

[Guest guest]

- totally awesome info. Can I ask a favor? I am in the

beginning stages of writing our first ever RSS/SGA Guidebook. When

I get to the nutrition part, can I email you? I want it to be good

before sending it to Cindy, since I hate to use up too much of her

time. I would SOO appreciate it -- this is a huge undertaking, and

you can imagine trying to write about every topic from A-Z on

RSS/SGA kids!!!

> Dear Leah,

>

> I just got off the phone with my nutritionist. I'll share what

info

> she gave me. But first, if you are having a hard time securing a

> nutritionist, try Cindy Baranoski at Easter Seals DuPage. She was

> one of our lecturer's last year at convention and I found her to

be

> very helpful. Her email address is cbaranoski@

eastersealsdupage.org

> (no spaces).

>

> O.k. With the dietary limitations of your daughter, not only do

you

> have to find different carbs, you need to chase them with

something

> dense in fat to slow their absorption even more. Hopefully that

will

> halt these hypoglycemia episodes.

>

> Brown rice is the best for carbs and slow absorbtion. Potatoes

and

> Sweet Potatoes are good too. Corn and Peas are high in carbs. If

> you can use oils, margarine, peanut butter or eggs to slow these

> down, that would be great. You see, the PB, oil and eggs

stabilize

> the absorbtion in your child's blood stream, thus no spikes and no

> crashes, slower absorbtion and STORED SUGAR FUEL!

>

> Articles H-26-28 from the Magic Foundation would be crucial for

you

> to have as a resource and to show the doc's you are working with.

>

> Some reasons for Hypoglycemia in our RSS kids are as follows. Due

to

> poor eating, they aren't taking in enough glucose. Plus, due to

> their small size, their small livers and poor body mass, they

can't

> store much glycogen. Finally due to size, they have a limited

> amount of amino acids for gluconeogenesis. That's why we give

our

> kids the cornstarch at night. The body will use that as a source

of

> sugar rather than rob it's stores of glycogen.

>

> This next info is an edited quote from Dr. H. in article H-28

> explaining how ketones & hypoglycemia are linked.

>

> " Ketone body formation is associated with low blood sugar. In

> hypoglycemia there is not enough sugar available to cells.

Normally,

> cells use sugar, (glucose) as their main fuel. When there is not

> enough sugar to fuel the cells they begin to burn fat. Big fat

> molecules, (triglycerides) must be broken down into smaller

molecules

> to be used as a fuel. Ketone bodies are these smaller, broken

down

> molecules from fat. thus, the presence of Ketones simply means

that

> the cells are getting low on sugar and are using fat as a fuel.

>

> RSS children have large brains and a small body. BRAIN CELLS

cannot

> use fat as a fuel. The RSS child's small body can store and only

> make small amounts of sugar. Thus Unlike proportionate kids,

fasting

> (sleeping) RSS kids can use up their sugar stores in 3-4 hours,

> especially if they are poor eaters.

>

> To prevent the hypoglycemia, check for ketones in the urine often

so

> that you can fix the problem by giving sugar and complex

> carbohydrates before your child's levels drop to dangerously low

> levels. "

>

> I hope and pray this helps. You know a while back, I wrote a

tongue

> in cheek article on " The Top Ten Reasons I love being a parent to

a

> child with RSS. " I should have included the fact that you need to

> become an expert on nutrition as well as food texture and genetics

> and gastro-intestinal diagnoses and ... I think you get the

picture.

>

> Finally, you mentioned that you were going to change doc's because

> the local pede wasn't being very helpful. I give you this one

piece

> of advice that completely fryed my fanny when I heard it, but

> eventually it made sense. Leah, you are going to have to become

your

> own " expert " on RSS. If you get angry at that by all means kick

> something hard or scream in a pillow (these helped me after that

> frustrating doctors appointment). I know you're aren't a doc. I

> know it's hard sorting through all the medical language and

chemistry

> crap that these articles are written in. But the tall and short

of

> it is you are Olivia's mom, primary care giver and loudest

advocate

> she has. The more you know, the more they will have to listen.

> I've " educated " a new Pede doc and the GI specialist working with

> Connor by giving them articles from Magic. I've done the

research,

> joined the list serve, joined Magic, and networked with the other

> families in my state. I live on my computer now in between

feedings

> for Connor. It's not where I want to be right now in life, but

it's

> still where I am at. Patience and foreberance dear heart. It

does

> get better down the road.

>

> Grace and Peace,

>

> Kearns

> Mom to Graham 7; Cameron 4; Connor 16 months IUGR SGA/RSS?

Periactin

> & Zantac. 28 1/4 inches long (depending on which leg your

measuring)

> and 14 lbs 11 oz in weight.