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

[Guest guest]

Hi Antoinette, you may have already considered this, but have you had your

child checked for amino acid deficiencies?

As an adult but I was basically starving to death due to malnutrition, not

having enough amino acids to assimilate the food items I was eating.

Normally I should weigh above 160 pounds but was down to 128 pounds. Thanks

to a very kind doctor who during my first visit, immediately discerned what

was happening. She authorized the comprehensive digestive stool analysis

from Great Smokies Diagnostic Lab. The lab results came back and indicated

that I was very deficient in many amino acids and a prescription was issued

for the deficiencies. It took a few months for my body to adjust to the

amino acids, but I have been able to increase my weight noticeably and do

not feel any where near as hungry as I did in the past. Best wishes, Sam.

[scdinfo] I NEED 10 HIGH CALORIE IDEAS was: When to throw in the

towel....What did Elaine say?

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)

[Guest guest]

Did you find a rice free amino acid supplement?

Thank you in advance,

Mimi

> Hi Antoinette, you may have already considered this, but have you had your

> child checked for amino acid deficiencies?

>

> As an adult but I was basically starving to death due to malnutrition, not

> having enough amino acids to assimilate the food items I was eating.

> Normally I should weigh above 160 pounds but was down to 128 pounds. Thanks

> to a very kind doctor who during my first visit, immediately discerned what

> was happening. She authorized the comprehensive digestive stool analysis

> from Great Smokies Diagnostic Lab. The lab results came back and indicated

> that I was very deficient in many amino acids and a prescription was issued

> for the deficiencies. It took a few months for my body to adjust to the

> amino acids, but I have been able to increase my weight noticeably and do

> not feel any where near as hungry as I did in the past. Best wishes, Sam.

>

>

> [scdinfo] I NEED 10 HIGH CALORIE IDEAS was: When to throw in the

> towel....What did Elaine say?

>

>

> 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)

>

>

>