Additonal foods for Olivia

[Guest guest]

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.