Help please... ideas for improvement??

January 31, 2004

Hi... we are big fan of SCD and have been totally legal for 5

months now (or there about).

We are not yet adding raw foods and are basically on the stage one-

stage 2 a little bit due to gut issues still. We take legal

Probiotic and enzymes and have tried switching these around to see

if that helps but it did not make a difference.

We just had a wonderful evaluation by Dr. Jaquelyn McCandless and

she did extensive testing that gave us a wealth of information on

the gut issues and other issues too. We still have massive gut

issues and truly have been so compliant to the diet... and plan to

stay on it. I wanted to see if there are any suggestions by other

parents of foods that you used when you had stubbon yeast and

bacteria. My sons issues were so severe that we have started a round

of Diflucan and Vancomycin due to the fact that he is not absorbing

nutrients at all and we are seeing regression and weight loss that

is quite alarming. The testing which was very extensive and done

through the specialty labs that deal with these children all the

time showed significant malnutrition and he is eating TONS of food

daily and always seems to be starving.. which in essense she

explained to me he is. The supplements are not being absorbed either

so he is basically in a very challenging situation. I am seeing

improvement in the last 2 days after starting the perscriptions..

this is not the normal course of action for her patients I don't

think and not what we initally discussed .. normally it is done by

diet and supplements but the weight loss and other symptoms prompted

having to go to " step 3 " much sooner than usual. I am glad we did..

he is acting more like his normal self today and has not seemed

starved as much at every meal. He literally crams food in his mouth

and begs for more even after eating 1/4-1/3 chicken, cooked squash,

pear sauce, green beans and banana on occasion. Huge amounts of food

but never stops feeling hungry and she explained this is due to the

malabsorption of nutrients and the fact that he feels hungry still

due to this.

She suggested staying with the diet.. we are not doing any dairy..

he has dangerous sensitivity to casin/dairy and our greatest gains

came when we went casin free 6 months ago. We eliminated grape juice

and now have pear juice VERY diluted that I make and drink water.

Any thoughts from anyone who has dealt with subborn gut issues that

do not respond would be so appreciated. We have seen gains on the

diet and as many of you know, I am a big supporter. I just need to

figure out if there are foods we are not eating that we can add that

might be good at this time. We cannot have eggs or dairy and are

trying to stick to cooked pearsauce I make for fruit. He has small

amount of ripe banana at his early intervention class which meets 4

days a week. We use Enzyme Comlete and have used Super Nu Thera but

will be starting some other things per Dr. McCandless orders after

our recent eval. The things we have started already have made a very

positive difference. We also have never had a formed stool.. ever.

His volume and frequency of soft stools got better when we started

SCD and it has fluctuated between better and flare ups and we have

treated for yeast with all the " natural " means and with Nystatin in

the past. But nothing has corrected the stools... with strict

complicance to the diet of course during the whole time up until

seeing her 2 weeks ago. We are still basically on Stage 1 with

little variety and eating those foods he can tolerate. He eats

cooked chicken (organic and plain cooked), cooked squash, cooked

green beans, a small amount of cooked carrots, cooked homemade

pearsauce and has had a little beef made into meatloaf with veggies

in the past but now we are eliminating that.. he had VERY high bad

cholesterol. He has occasional banana and we did homemade applesauce

until we saw Dr. McCandless and she requested we switch for a bit to

pearsauce.

Any ideas would be great. Have a blessed week-end and sorry for the

length of this post! I'd love any ideas!

Mom to Slater 2 years old and SCD legal 5 months dairy/egg free

PDD/NOS

January 31, 2004

If you are using super nu thera, that caused terrible diarrhea with my

son. Once we stopped that, he was a lot better. Kristy

On Saturday, January 31, 2004, at 01:10 PM, adoptinggrace wrote:

> Hi... we are big fan of SCD and have been totally legal for 5

> months now (or there about).

> We are not yet adding raw foods and are basically on the stage one-

> stage 2 a little bit due to gut issues still. We take legal

> Probiotic and enzymes and have tried switching these around to see

> if that helps but it did not make a difference.

> We just had a wonderful evaluation by Dr. Jaquelyn McCandless and

> she did extensive testing that gave us a wealth of information on

> the gut issues and other issues too. We still have massive gut

> issues and truly have been so compliant to the diet... and plan to

> stay on it. I wanted to see if there are any suggestions by other

> parents of foods that you used when you had stubbon yeast and

> bacteria. My sons issues were so severe that we have started a round

> of Diflucan and Vancomycin due to the fact that he is not absorbing

> nutrients at all and we are seeing regression and weight loss that

> is quite alarming. The testing which was very extensive and done

> through the specialty labs that deal with these children all the

> time showed significant malnutrition and he is eating TONS of food

> daily and always seems to be starving.. which in essense she

> explained to me he is. The supplements are not being absorbed either

> so he is basically in a very challenging situation. I am seeing

> improvement in the last 2 days after starting the perscriptions..

> this is not the normal course of action for her patients I don't

> think and not what we initally discussed .. normally it is done by

> diet and supplements but the weight loss and other symptoms prompted

> having to go to " step 3 " much sooner than usual. I am glad we did..

> he is acting more like his normal self today and has not seemed

> starved as much at every meal. He literally crams food in his mouth

> and begs for more even after eating 1/4-1/3 chicken, cooked squash,

> pear sauce, green beans and banana on occasion. Huge amounts of food

> but never stops feeling hungry and she explained this is due to the

> malabsorption of nutrients and the fact that he feels hungry still

> due to this.

> She suggested staying with the diet.. we are not doing any dairy..

> he has dangerous sensitivity to casin/dairy and our greatest gains

> came when we went casin free 6 months ago. We eliminated grape juice

> and now have pear juice VERY diluted that I make and drink water.

> Any thoughts from anyone who has dealt with subborn gut issues that

> do not respond would be so appreciated. We have seen gains on the

> diet and as many of you know, I am a big supporter. I just need to

> figure out if there are foods we are not eating that we can add that

> might be good at this time. We cannot have eggs or dairy and are

> trying to stick to cooked pearsauce I make for fruit. He has small

> amount of ripe banana at his early intervention class which meets 4

> days a week. We use Enzyme Comlete and have used Super Nu Thera but

> will be starting some other things per Dr. McCandless orders after

> our recent eval. The things we have started already have made a very

> positive difference. We also have never had a formed stool.. ever.

> His volume and frequency of soft stools got better when we started

> SCD and it has fluctuated between better and flare ups and we have

> treated for yeast with all the " natural " means and with Nystatin in

> the past. But nothing has corrected the stools... with strict

> complicance to the diet of course during the whole time up until

> seeing her 2 weeks ago. We are still basically on Stage 1 with

> little variety and eating those foods he can tolerate. He eats

> cooked chicken (organic and plain cooked), cooked squash, cooked

> green beans, a small amount of cooked carrots, cooked homemade

> pearsauce and has had a little beef made into meatloaf with veggies

> in the past but now we are eliminating that.. he had VERY high bad

> cholesterol. He has occasional banana and we did homemade applesauce

> until we saw Dr. McCandless and she requested we switch for a bit to

> pearsauce.

> Any ideas would be great. Have a blessed week-end and sorry for the

> length of this post! I'd love any ideas!

>

> Mom to Slater 2 years old and SCD legal 5 months dairy/egg free

> PDD/NOS

>

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

> following websites:

> http://www.breakingtheviciouscycle.info

> and

> http://www.pecanbread.com

>

February 1, 2004

There is a powdered hypoallergencic SuperNuThera that my son had better

results with.

Re: Help please... ideas for improvement??

> If you are using super nu thera, that caused terrible diarrhea with my

> son. Once we stopped that, he was a lot better. Kristy

> On Saturday, January 31, 2004, at 01:10 PM, adoptinggrace wrote:

>

> > Hi... we are big fan of SCD and have been totally legal for 5

> > months now (or there about).

> > We are not yet adding raw foods and are basically on the stage one-

> > stage 2 a little bit due to gut issues still. We take legal

> > Probiotic and enzymes and have tried switching these around to see

> > if that helps but it did not make a difference.

> > We just had a wonderful evaluation by Dr. Jaquelyn McCandless and

> > she did extensive testing that gave us a wealth of information on

> > the gut issues and other issues too. We still have massive gut

> > issues and truly have been so compliant to the diet... and plan to

> > stay on it. I wanted to see if there are any suggestions by other

> > parents of foods that you used when you had stubbon yeast and

> > bacteria. My sons issues were so severe that we have started a round

> > of Diflucan and Vancomycin due to the fact that he is not absorbing

> > nutrients at all and we are seeing regression and weight loss that

> > is quite alarming. The testing which was very extensive and done

> > through the specialty labs that deal with these children all the

> > time showed significant malnutrition and he is eating TONS of food

> > daily and always seems to be starving.. which in essense she

> > explained to me he is. The supplements are not being absorbed either

> > so he is basically in a very challenging situation. I am seeing

> > improvement in the last 2 days after starting the perscriptions..

> > this is not the normal course of action for her patients I don't

> > think and not what we initally discussed .. normally it is done by

> > diet and supplements but the weight loss and other symptoms prompted

> > having to go to " step 3 " much sooner than usual. I am glad we did..

> > he is acting more like his normal self today and has not seemed

> > starved as much at every meal. He literally crams food in his mouth

> > and begs for more even after eating 1/4-1/3 chicken, cooked squash,

> > pear sauce, green beans and banana on occasion. Huge amounts of food

> > but never stops feeling hungry and she explained this is due to the

> > malabsorption of nutrients and the fact that he feels hungry still

> > due to this.

> > She suggested staying with the diet.. we are not doing any dairy..

> > he has dangerous sensitivity to casin/dairy and our greatest gains

> > came when we went casin free 6 months ago. We eliminated grape juice

> > and now have pear juice VERY diluted that I make and drink water.

> > Any thoughts from anyone who has dealt with subborn gut issues that

> > do not respond would be so appreciated. We have seen gains on the

> > diet and as many of you know, I am a big supporter. I just need to

> > figure out if there are foods we are not eating that we can add that

> > might be good at this time. We cannot have eggs or dairy and are

> > trying to stick to cooked pearsauce I make for fruit. He has small

> > amount of ripe banana at his early intervention class which meets 4

> > days a week. We use Enzyme Comlete and have used Super Nu Thera but

> > will be starting some other things per Dr. McCandless orders after

> > our recent eval. The things we have started already have made a very

> > positive difference. We also have never had a formed stool.. ever.

> > His volume and frequency of soft stools got better when we started

> > SCD and it has fluctuated between better and flare ups and we have

> > treated for yeast with all the " natural " means and with Nystatin in

> > the past. But nothing has corrected the stools... with strict

> > complicance to the diet of course during the whole time up until

> > seeing her 2 weeks ago. We are still basically on Stage 1 with

> > little variety and eating those foods he can tolerate. He eats

> > cooked chicken (organic and plain cooked), cooked squash, cooked

> > green beans, a small amount of cooked carrots, cooked homemade

> > pearsauce and has had a little beef made into meatloaf with veggies

> > in the past but now we are eliminating that.. he had VERY high bad

> > cholesterol. He has occasional banana and we did homemade applesauce

> > until we saw Dr. McCandless and she requested we switch for a bit to

> > pearsauce.

> > Any ideas would be great. Have a blessed week-end and sorry for the

> > length of this post! I'd love any ideas!

> >

> > Mom to Slater 2 years old and SCD legal 5 months dairy/egg free

> > PDD/NOS

> >

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

> > following websites:

> > http://www.breakingtheviciouscycle.info

> > and

> > http://www.pecanbread.com

> >

February 2, 2004

Hi ,

In addition to the yeast was Slater tested for Clostridium. difficile or

parasites?

Here is a post Elaine sent to Lyris on the subject:

http://lyris.dundee.net/read/messages?id=257571#257571

2003-11-03 22:21:00 <Elaine Gottschall>

The question was asked:

<<with this diet, can clostridia run rampant if it is present, now that

there

is no yeast competing for space in the gut? Are there any natural herbal

treatments for clostridia? >>>

You are not killing off all the bacteria; you are changing their

characteristics. For example, E.. coli, a normal inhabitant of the gut, can

change to a pathological form when the acid/alkaline environement of the gut

changes. We are changing " the soil " in which bacteria are growing and

changing some harmful forms to normal healthy forms. Which brings me back

to the probiotics again. Yes, for those who can tolerate the yogurt, fine

BUT since most yogurt contains only bacteria that are usually not permanent

residents of the gut (Lactobacillus acidophilus and Streptococcus

thermophilus) it is good to also have a source for Lactobacillus

acidophilus which IS considered a bacteria which CAN TAKE UP RESIDENCE and

replace some of the bacteria which will be killed off. But not all of them

are being killed, they are being changed in their metabolic characteristics.

As for relapses, it is my feeling that some may be caused by Clostridia

which can go into

" hibernation " and emerge at unexpected times. Clostridia are difficult to

diagnose and often the person has to be tested a few times to make sure they

are not escaping detection. For this kind of thing, often vancomysin or

flagyl can be used but that is a medical decision.

Sheila, 3 years SCD! UC 20 yrs

mom of SCD 20 mos

My sons issues were so severe that we have started a round

>of Diflucan and Vancomycin due to the fact that he is not absorbing

>nutrients at all and we are seeing regression and weight loss that

>is quite alarming. The testing which was very extensive and done

>through the specialty labs that deal with these children all the

>time showed significant malnutrition and he is eating TONS of food

>daily and always seems to be starving.. which in essense she

>explained to me he is. The supplements are not being absorbed either

>so he is basically in a very challenging situation. I am seeing

>improvement in the last 2 days after starting the perscriptions..

>this is not the normal course of action for her patients I don't

>think and not what we initally discussed .. normally it is done by

>diet and supplements but the weight loss and other symptoms prompted

>having to go to " step 3 " much sooner than usual. I am glad we did..

>he is acting more like his normal self today and has not seemed

>starved as much at every meal. He literally crams food in his mouth

>and begs for more even after eating 1/4-1/3 chicken, cooked squash,

>pear sauce, green beans and banana on occasion. Huge amounts of food

>but never stops feeling hungry and she explained this is due to the

>malabsorption of nutrients and the fact that he feels hungry still

>due to this.

>She suggested staying with the diet.. we are not doing any dairy..

>he has dangerous sensitivity to casin/dairy and our greatest gains

>came when we went casin free 6 months ago. We eliminated grape juice

>and now have pear juice VERY diluted that I make and drink water.

>Any thoughts from anyone who has dealt with subborn gut issues that

>do not respond would be so appreciated. We have seen gains on the

>diet and as many of you know, I am a big supporter. I just need to

>figure out if there are foods we are not eating that we can add that

>might be good at this time. We cannot have eggs or dairy and are

>trying to stick to cooked pearsauce I make for fruit. He has small

>amount of ripe banana at his early intervention class which meets 4

>days a week. We use Enzyme Comlete and have used Super Nu Thera but

>will be starting some other things per Dr. McCandless orders after

>our recent eval. The things we have started already have made a very

>positive difference. We also have never had a formed stool.. ever.

>His volume and frequency of soft stools got better when we started

>SCD and it has fluctuated between better and flare ups and we have

>treated for yeast with all the " natural " means and with Nystatin in

>the past. But nothing has corrected the stools... with strict

>complicance to the diet of course during the whole time up until

>seeing her 2 weeks ago. We are still basically on Stage 1 with

>little variety and eating those foods he can tolerate. He eats

>cooked chicken (organic and plain cooked), cooked squash, cooked

>green beans, a small amount of cooked carrots, cooked homemade

>pearsauce and has had a little beef made into meatloaf with veggies

>in the past but now we are eliminating that.. he had VERY high bad

>cholesterol. He has occasional banana and we did homemade applesauce

>until we saw Dr. McCandless and she requested we switch for a bit to

>pearsauce.

>Any ideas would be great. Have a blessed week-end and sorry for the

>length of this post! I'd love any ideas!

>

>Mom to Slater 2 years old and SCD legal 5 months dairy/egg free

>PDD/NOS

>

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February 2, 2004

Hi again ,

(I hit the send button to fast)

I also wanted to ask if you have thought about trying the nut yogurt or

other dairy free probiotics? If using vancomysin and nystatin it is

probably a good idea to have a source of " good " bacteria.

Nut yogurt recipe is at: http://pecanbread.com/recipes.html

Probiotics: http://pecanbread.com/probiotics.html

Sheila, 3 years SCD! UC 20 yrs

mom of SCD 20 mos

>

>Reply-To: pecanbread

>To: pecanbread

>Subject: Help please... ideas for improvement??

>Date: Sat, 31 Jan 2004 19:10:28 -0000

>

>Hi... we are big fan of SCD and have been totally legal for 5

>months now (or there about).

>We are not yet adding raw foods and are basically on the stage one-

>stage 2 a little bit due to gut issues still. We take legal

>Probiotic and enzymes and have tried switching these around to see

>if that helps but it did not make a difference.

>We just had a wonderful evaluation by Dr. Jaquelyn McCandless and

>she did extensive testing that gave us a wealth of information on

>the gut issues and other issues too. We still have massive gut

>issues and truly have been so compliant to the diet... and plan to

>stay on it. I wanted to see if there are any suggestions by other

>parents of foods that you used when you had stubbon yeast and

>bacteria. My sons issues were so severe that we have started a round