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Please help - my son keeps losing weight

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Hi everyone,

My 5 1/2 year old son has been on SCD since late February. He is

tube fed, non-verbal, and autistic. He was born prematurely at 26

weeks and has always had trouble with weight gain. Since we started

SCD he has lost about 5 pounds - he is now about 42 inches and this

morning weighed 32.6 pounds. He is looking malnourished. His stools

have really not improved at all that I can tell - still mushy,

smelly, float in the toilet, etc. He is diapered still so I know he

is not going without my knowledge and I see all of them. I am giving

him only foods listed on stage I and II on the pecan bread website.

Everything is cooked, peeled, deseeded, and pureed to go through his

tube. I did start goat yogurt almost a week ago and he seems to be

tolerating that well as far as I can tell. I never did get my

probiotics yet from GI Pro Health. I'm glad they at least shipped

the Progurt starter so we can do the yogurt. I add oils to his

meals, give him avacados, and the only nut butter we are using right

now is almond butter - raw from the health food store.

Why is he losing so much weight?

Thanks for any input,

Cathy

Mom to Dakota, 5 1/2, ASD

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Thank you for your response, Will.

My son is fed via G-tube, or gastrostomy tube. He does not eat orally -

I have been told this is due to his own preference rather than any

medical reason preventing oral eating. He has a severe oral aversion,

which is due to his medical history. We are working on this but he

does not take nearly enough by mouth yet to sustain himself.

We started SCD mainly to try and help his digestion, and figured any

improvement in the autism would be great but our main goal is to try to

get him healthy. He has always had poor digestion - when he was on

standard commercial formulas I could open his tube to let gas out of

his stomach four hours after his last tube feeding, and I would still

get fresh formula flowing back out of the tube. Obviously he did not

grow well. The only formula he has done somewhat well with was an

amino-acid formula, which was basically corn syrup and added

vitamins/minerals. He gained weight well on this but still had

terrible reflux symptoms regardless of large doses of medication to try

and control it.

I switched him to a pureed foods diet last September (not SCD) and he

lost a little weight but then maintained at around 37 pounds. His

heaviest was about 41 pounds, which was actually considered overweight

for him, and this was on the formula I mentioned above.

Since starting SCD he has dropped from 37 down to today's weight of

32.6.

On the pureed foods his reflux is virtually gone. He can tolerate

several bolus feedings a day and does not require the 24-hour pump

feedings he needed before when on commercial formulas. (On the

formulas he could only tolerate about 3 ounces per hour or he would gag

and wretch from his reflux symptoms.) However, I am concerned about

the weight loss.

Hope that helps - sorry to write a book.

Cathy

Mom to Dakota, ASD, SCD since late Feb 2007

>

> Please be more specific about the type of tube.

>

> What, exactly, are your reasons for implementing SCD?

>

> Greasy floating stools is obviously suggestive of impaired fat

> assimilation. If insufficient carbohydrate is present in the diet it

> can lead to a dehydrating effect, however this should not account for

> more than around 5% of total body mass. How much weight, exactly,

has

> been lost?

>

> -Will

>

>

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Hi Cathy,

Maybe the almond butter is impairing the improvement.

The weight loss might be due to the loss of bad bacterias in the gut.

If it continues, please get SCD counseling.

Are you using any medications or supplements? Toothpaste and

proffessional dental cleaning might cause problems.

Try this website;

http://www.pecanbread.com/new/gainweight.html

Mimi

> Hi everyone,

>

> My 5 1/2 year old son has been on SCD since late February. He is

> tube fed, non-verbal, and autistic. He was born prematurely at 26

> weeks and has always had trouble with weight gain. Since we started

> SCD he has lost about 5 pounds - he is now about 42 inches and this

> morning weighed 32.6 pounds. He is looking malnourished. His stools

> have really not improved at all that I can tell - still mushy,

> smelly, float in the toilet, etc. He is diapered still so I know he

> is not going without my knowledge and I see all of them. I am giving

> him only foods listed on stage I and II on the pecan bread website.

> Everything is cooked, peeled, deseeded, and pureed to go through his

> tube. I did start goat yogurt almost a week ago and he seems to be

> tolerating that well as far as I can tell. I never did get my

> probiotics yet from GI Pro Health. I'm glad they at least shipped

> the Progurt starter so we can do the yogurt. I add oils to his

> meals, give him avacados, and the only nut butter we are using right

> now is almond butter - raw from the health food store.

>

> Why is he losing so much weight?

>

> Thanks for any input,

>

> Cathy

> Mom to Dakota, 5 1/2, ASD

>

>

>

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Guest guest

can you tell us exactly he is eating every day?

> >

> > Please be more specific about the type of tube.

> >

> > What, exactly, are your reasons for implementing SCD?

> >

> > Greasy floating stools is obviously suggestive of impaired fat

> > assimilation. If insufficient carbohydrate is present in the

diet it

> > can lead to a dehydrating effect, however this should not account

for

> > more than around 5% of total body mass. How much weight,

exactly,

> has

> > been lost?

> >

> > -Will

> >

> >

>

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crdykstra wrote:

Please be more specific about the type of tube.

What, exactly, are your reasons for implementing SCD?

Greasy floating stools is obviously suggestive of impaired fat

assimilation. If insufficient carbohydrate is present in the diet it

can lead to a dehydrating effect, however this should not account for

more than around 5% of total body mass. How much weight, exactly, has

been lost?

-Will

> Hi everyone,

>

> My 5 1/2 year old son has been on SCD since late February. He is

> tube fed, non-verbal, and autistic. He was born prematurely at 26

> weeks and has always had trouble with weight gain. Since we started

> SCD he has lost about 5 pounds - he is now about 42 inches and this

> morning weighed 32.6 pounds. He is looking malnourished. His stools

> have really not improved at all that I can tell - still mushy,

> smelly, float in the toilet, etc. He is diapered still so I know he

> is not going without my knowledge and I see all of them. I am giving

> him only foods listed on stage I and II on the pecan bread website.

> Everything is cooked, peeled, deseeded, and pureed to go through his

> tube. I did start goat yogurt almost a week ago and he seems to be

> tolerating that well as far as I can tell. I never did get my

> probiotics yet from GI Pro Health. I'm glad they at least shipped

> the Progurt starter so we can do the yogurt. I add oils to his

> meals, give him avacados, and the only nut butter we are using right

> now is almond butter - raw from the health food store.

>

> Why is he losing so much weight?

>

> Thanks for any input,

>

> Cathy

> Mom to Dakota, 5 1/2, ASD

>

>

>

>

> For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

websites:

> http://www.breakingtheviciouscycle.info

> and

> http://www.pecanbread.com

>

>

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