I NEED 10 HIGH CALORIE IDEAS was: When to throw in the towel....What did Elaine say?

June 19, 2007

Guys, We would never return to the Sadiet. I trust that SCD is biologically

correct.

Still searching for answers, I reviewed Dr. Haas's book again. Does anyone know

why Dr. Haas says ONE year, and Elaine says one year after the last symptoms

leave? Making that about two for some of us with CD? I don't want to mess up

here.

Still having to confront constant hunger because of HIGH metabolism and impaired

digestion due to metabolic condition though.

People we are talking 3000+ calories a day. She is a small 28 pound child. If

we are to stay SCD HOW do I DO THIS?

I need a few more HIGH CALORIE ideas. And ways to make a child compliant to

eating more and nursing less....whenn she is already eating every 3 hours around

the clock. Trying to wean from human milk and supplementing these lost calories

has proved to be impossible. I do not blame SCD!

1200 of this 3000 that she has to have is human milk. She is eating every two

or so hours around the clock. NIGHTS included.

When I wean 1000+ of this 3000+ is TAKEN AWAY. She is three, I would like to

wean a bit...if not completely.

WE are still nursing like an infant (sometimes up to 10 times a day). I am

certain that this is not behavioral because of the weight loss that goes with it

when we wean. She simply is not ready due to her condition.

Some kids with her condition end up with G tubes and IV ports due to not being

able to consume enough calories to sustain metabolic issues and still grow well.

I do not want this either! I need to wean though.

Again, she IS THREE YEARS OLD. I Have been nursing like this since her birth

2004. Talk about committed...but I am throwing in the towel...more on this than

SCD!

Oh, how I wish Elaine was here at times like this! If it is at all possible,

thank you for helping us keep our daughter SCD. After the research and success

we have had I am not just going to say goodbye to " fanatical " yet.

BUT GUYS the entire picture is not being seen by you. I am EXHAUSTED.....and

she is too. HELP! I do not have money to pay for private consult. Sorry

When I read this post before I sent it...this just seem ridiculous...trust I am

not joking here. This is typical for a kid like here. WHAT a life!

Antoinette and family of Five

(FANATICAL 100% SCD since 2/06)

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