RE: Feeling Disappointed

June 28, 2004

I have one small thought.

Fifteen minutes a day of that mid-day summer sun is a wonderful

source of vitamin D, and its easy to get if you're looking for it.

I have a hunch it helps make other stuff (vitamins and EFA) work

better too. BTW, you are so lucky not to have obvious dairy

problems, they are really a bear.

Best to you,

Kathy H.

SCD 105 10 & 8

---

In pecanbread , " cubicmonica " <cubicmonica@y...>

wrote:

> My autistic son has now been on this diet for 7 months and I am

> feeling disappointed. Like with GFCF, I saw good gains in the

> beginning but that leveled off with no more improvement. I feel

this

> diet has really helped my son physically (finally solid stools!),

but

> developmentally he is not improving. I am actually starting to

> consider giving up. He is taking Houston's SCD legal enzymes in

> addition to diet. Here is what he eats in case anyone has any

ideas:

>

> grilled chicken

> sugar-free bacon

> pork rinds

> homemade meatloaf

> raisins

> grapes

> apple slices

> smoothies (strawberry, banana, yogurt & apple juice)

> Lois Lang bread with peanut butter

> homemade yogurt (cow's milk & Yogourmet starter)

> cinnamon almond cookies

> zucchini muffins

> banana muffins

> coffee cake

> peanut butter cake

> banana waffles

> cooked carrots

> broccoli

> Welch's white grape juice (diluted)

>

> Supplements: Peptizyde, Zyme Prime, zinc (Kirkman's capsules) &

> vitamin C

>

> I am not giving him a multi-vitamin since what little I have tried

I

> couldn't get down him and because I am too poor to buy product

after

> product that goes unused. I am starting to wonder though if the

> given him EFA's because he is allergic to fish and flax is

illegal.

> I tried chelation for a few months before SCD but felt it was

making

> him worse instead of better. He also has celiac disease. Though

he

> was casein free for over 2 years, he has never reacted to dairy.

Any

> ideas for the next step?

>

June 28, 2004

At school, my son spend plenty of time outside. I would guess he is

outdoors in the playground about 45-60 minutes per day. He's got

quite a tan to show for it.

> > My autistic son has now been on this diet for 7 months and I am

> > feeling disappointed. Like with GFCF, I saw good gains in the

> > beginning but that leveled off with no more improvement. I feel

> this

> > diet has really helped my son physically (finally solid stools!),

> but

> > developmentally he is not improving. I am actually starting to

> > consider giving up. He is taking Houston's SCD legal enzymes in

> > addition to diet. Here is what he eats in case anyone has any

> ideas:

> >

> > grilled chicken

> > sugar-free bacon

> > pork rinds

> > homemade meatloaf

> > raisins

> > grapes

> > apple slices

> > smoothies (strawberry, banana, yogurt & apple juice)

> > Lois Lang bread with peanut butter

> > homemade yogurt (cow's milk & Yogourmet starter)

> > cinnamon almond cookies

> > zucchini muffins

> > banana muffins

> > coffee cake

> > peanut butter cake

> > banana waffles

> > cooked carrots

> > broccoli

> > Welch's white grape juice (diluted)

> >

> > Supplements: Peptizyde, Zyme Prime, zinc (Kirkman's capsules) &

> > vitamin C

> >

> > I am not giving him a multi-vitamin since what little I have

tried

> I

> > couldn't get down him and because I am too poor to buy product

> after

> > product that goes unused. I am starting to wonder though if the

> next

> > step I need to address is supplements though. I also have never

> > given him EFA's because he is allergic to fish and flax is

> illegal.

> > I tried chelation for a few months before SCD but felt it was

> making

> > him worse instead of better. He also has celiac disease. Though

> he

> > was casein free for over 2 years, he has never reacted to dairy.

> Any

> > ideas for the next step?

> >

June 28, 2004

He used to react to bananas but since SCD he has been fine with

bananas - enzymes or not. I limit apples to about 1/4 but as long as

I give him his enzymes, he does fine with those too. He loves

pineapple but it gives him diarrhea so I stopped. I discovered he

was reacting to the papain in the original Houston enzymes when I

switched to the SCD legal ones.

> Hi ,

> Have you tried removing the sal/phenols?Most things that he

eats

> are very high in one or the other.It may not be an issue for

> him,just a thought.When my son eats anything that is high,he will

> not do things that he has mastered in his programs.He acts like

he's

> never seen some stuff before.They have a huge affect on my son.You

> might do some food trials to see.Your doing a great job,don't get

> frustrated.It's easy to do,I know.Hang in there.

>

> DeAnn,mom to 4 yr. asd,scd 20 weeks & 3other nt children

June 28, 2004

- Like with GFCF, I saw good gains in the

> beginning but that leveled off with no more improvement. I feel this

> diet has really helped my son physically (finally solid stools!), but

> developmentally he is not improving. I am actually starting to

> consider giving up.

>

> Don't give up! You have put so much effort into it and he is eating

healthy and also has good stools. Be glad he is not on

a bunch of mediation for UC. Also maybe he has healed enough and is

absorbing nutrients from foods so you don't need

to give him a lot of vitamins. I know how you feel............I have a

child that has a lot of issues and keep looking everyday for

signs of developmental improvement, maybe it just takes more time for

some kids on the spectrum.

I did SCD for 3 months and stopped for one due to problems at school and

it made a BIG difference in her stools and

behavior! For that one month I was giving her soy, rice, etc. the whole

time I felt like it was a mistake. In 3 days back on

SCD her stools normalized again. Not the constipation but the color and

no undigested food. I even have stopped her

Sulfasalazine about 3 weeks ago due to running out and not hearing from

Dr. Krigsman but think I will keep her off and only

do SCD. Take care and hang in there!!

Kathy in NC

Hannah-13, NT and Abby-9, ASD, UC and SCD restarted 2 weeks ago

>

> 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

>

June 28, 2004

Dear ,

You must be feeling extremely disappointed to consider giving up, especially

since you've said so many times how much good the diet has done your entire

family. I couldn't swear that the diet has helped my daughter

developmentally either, but I sure sleep better at night (and so does she)

knowing that she's getting nutritious food in her body, instead of a bunch

of fillers.

Have you considered having any more testing done since he's been on SCD for

some time now? It might be a good starting place to find out which vitamins

and minerals he may be high or low in so that you're not doing trial and

error too much with supplements. I give all supplements to my daughter via

heavily diluted juice, except for the B12 shots and CLO which she takes

readily and willingly for some reason.(?) Also, I'm a BIG proponent of

DMG--chewable and tastes good.

Could it be that he is taking a developmental break? Sometimes it's hard for

me to step outside the day to day rituals to see that progress is still

taking place, albeit slowly, at least compared to the initial changes most

of us see when starting dietary intervention. What do you feel he is lacking

developmentally for his age?

My thoughts are with you,

(4 1/2 yo daughter, ASD, SCD 2 months, GF/CF/SF 9 months)

Feeling Disappointed

My autistic son has now been on this diet for 7 months and I am

feeling disappointed. Like with GFCF, I saw good gains in the

beginning but that leveled off with no more improvement. I feel this

diet has really helped my son physically (finally solid stools!), but

developmentally he is not improving. I am actually starting to

consider giving up. He is taking Houston's SCD legal enzymes in

addition to diet. Here is what he eats in case anyone has any ideas:

grilled chicken

sugar-free bacon

pork rinds

homemade meatloaf

raisins

grapes

apple slices

smoothies (strawberry, banana, yogurt & apple juice)

Lois Lang bread with peanut butter

homemade yogurt (cow's milk & Yogourmet starter)

cinnamon almond cookies

zucchini muffins

banana muffins

coffee cake

peanut butter cake

banana waffles

cooked carrots

broccoli

Welch's white grape juice (diluted)

Supplements: Peptizyde, Zyme Prime, zinc (Kirkman's capsules) &

vitamin C

I am not giving him a multi-vitamin since what little I have tried I

couldn't get down him and because I am too poor to buy product after

product that goes unused. I am starting to wonder though if the next

step I need to address is supplements though. I also have never

given him EFA's because he is allergic to fish and flax is illegal.

I tried chelation for a few months before SCD but felt it was making

him worse instead of better. He also has celiac disease. Though he

was casein free for over 2 years, he has never reacted to dairy. Any

ideas for the next step?

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

June 28, 2004

,

Is it possible that your son is actually NOT tolerating all of these

foods? Even though his stools are better, maybe he is being

affected behaviorally or cognitively. Did you keep a food journal

when you started adding new foods? Maybe you could go back to some

kind of modified intro diet and add these foods slowly again. Write

down how he reacts, if he does. We have been doing SCD for a year

now, and my son cannot tolerate a lot of the foods on your list.

I'm not saying this is the case for your son, but just that it's

possible.

Have you tried the ultra-freeda vitamins from Lucy's Kitchen Shop?

That is what Elaine recommends and they can be crushed easily and

put into juice or pearsauce, even peanut butter or something like

that. I think supplementation is inevitable with these kids. It's

just finding the ones that your child needs. Does your son have a

true allergy to fish? Or is it an IgG response?

Gia

Mom to Jack (ASD and SCD 1 year)

June 28, 2004

, I don't know if this is helpful or not but you can order small

sample sizes from Kirkman. I have done it several times

only to find that like you, I did not use it. But only invested a couple of

dollars. My daughter is 9 and babbled as a baby but never really said any

significant words until we started PECs system at age 5. She is 9 now,

almost 10 and knows 100's of words but is very apraxic so they don't always

come out, is very jargony and still cries for attention sometimes instead of

using words. Fortunately she has really good receptive skills. The

language is there but you have to push her to use it. The PEC's book was

the key for us since she is so visual but yet has severe motor/apraxia

issues. Autism is so misunderstood by most people unless you live it. I am

thinking about you, take care of yourself.

Kathy

mom to Hannah-13, and Abby-9, ASD, UC, and SCD restarted for 2 weeks

p.s there is funding where we live to help families with Autistic kids for

things they need. We have gotten it twice. The

maximum is about $800 a year. You just apply and the committee meets and as

long as you are eligible you will get a check.

Is there any funding available like that in your area to help with the cost

of supplements, equipment, etc.?

> As I said, I am starting to think along the lines of supplements but

> I am really having a hard time making ends meet. The financial

> sacrifice to get supplements would have to be a sure thing. What I

> meant by trying different supplements is not a matter of wanting to

> see what he needs but what I can get down him or he can tolerate.

> Before SCD I bought a big canister of SuperNuThera only to throw it

> away due to it making him too hyper. The task of finding a multi-

> vitamin that is SCD legal and that I can force him to take seems

> impossible. Since he is allergic to fish, I don't know if there is

> an SCD legal EFA he can take. I used to give him TMG but stopped

> that since it is illegal. Where did you find a legal version of DMG?

>

> As for what he is lacking developmentally for age, he is 5 and can't

> talk. This is my #1 concern and the source of my disappointment. I

> feel that I am giving myself 150% with my main desire to get him to

> talk and that is the only thing he isn't doing. Honestly I am at the

> point of giving up because I feel it is hopeless. If after all this

> effort he cannot talk at age 5, what makes me think he will talk by

> age 10, 15 or 50?

>

> 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

>

June 29, 2004

,

I am so sad to hear this. Could it be that he is getting illegal foods

at school or from the school bus driver?

We had one mom,R F, on our list who got her five year old to talk.

At first she used to complain that she only got GI improvements with

SCD. She used to write the most evocative posts about how unfair it

was that the other children got cognitive results with SCD but not her

son.

A few months later,she reported that SCD,B shots,and X made her son

talk. I will tell you what X is in private email. I recently read a

post from that mother,so she must still be doing SCD with her son.

Maybe I will email that mother and ask if you can correspond with her.

I know the pain of mothers whose sons are 5 year old and not

talking.... I once had a 5 year old who only said a few words. I was

totally frozen and in despair. I taught him to read,it was impossible

for a long time but he finally did it. Reading made him talk.

Every child is different,and there are different solutions for our

children.

Mimi

June 29, 2004

My son's school is very diligent in watching him. He has a 1:1 aide

for this purpose and they always cover breaks so someone's eyes are

always on him. I have been to school events and observed them

catching him in his attempt to get something. One time at the school

open house they had a plate of cookies on a table. My son get out of

my grasp and made a bee-line for that table. He did not get far.

There were 4 aides rushing to him in what seemed like second nature

to them. As for the bus driver, she understands his diet and would

not offer him anything. I was without a car for a couple weeks and

since the bus passed by my work, she gave me a ride. I got to

observe her and the other kids and know it was not the kind of

situation where food was available.

> ,

>

> I am so sad to hear this. Could it be that he is getting illegal

foods

> at school or from the school bus driver?

>

> We had one mom,R F, on our list who got her five year old to talk.

> At first she used to complain that she only got GI improvements with

> SCD. She used to write the most evocative posts about how unfair it

> was that the other children got cognitive results with SCD but not

her

> son.

>

> A few months later,she reported that SCD,B shots,and X made her son

> talk. I will tell you what X is in private email. I recently read a

> post from that mother,so she must still be doing SCD with her son.

> Maybe I will email that mother and ask if you can correspond with

her.

>

> I know the pain of mothers whose sons are 5 year old and not

> talking.... I once had a 5 year old who only said a few words. I was

> totally frozen and in despair. I taught him to read,it was

impossible

> for a long time but he finally did it. Reading made him talk.

>

> Every child is different,and there are different solutions for our

> children.

>

> Mimi

June 29, 2004

Thank you. I forgot Kirkman's has sample sizes.

Twice PECS was tried with my son. The first time was when he was 2

1/2. He had a few words and a few signs he used regularly. He

caught on right away but stopped talking. He preferred to give a

picture instead (it was easier). He never got to the point of

discriminating. We decided he was using it as a crutch to not talk.

A year and half later, his speech therapist at school told me she

thought we should give it another try. After much pushing, I

reluctantly agreed. Again he picked it up right away and did get to

the point of chosing from a variety of pictures but again stopped

using any signs or words. He got to a point where he would no longer

progress and after a year his speech therapist agreed he was better

off learning signs. For the last 6 months they have been primarily

working on signs and words and he is starting to generalize more

signs at home. I get so tired at how different our kid are.

Sometimes I look at him and want to shake him and say, " what is going

on in your head, boy? " He is so smart when it comes to getting what

he wants but them acts so dumb when it comes to talking.

>

> , I don't know if this is helpful or not but you can order

small

> sample sizes from Kirkman. I have done it several times

> only to find that like you, I did not use it. But only invested a

couple of

> dollars. My daughter is 9 and babbled as a baby but never really

said any

> significant words until we started PECs system at age 5. She is 9

now,

> almost 10 and knows 100's of words but is very apraxic so they

don't always

> come out, is very jargony and still cries for attention sometimes

instead of

> using words. Fortunately she has really good receptive skills. The

> language is there but you have to push her to use it. The PEC's

book was

> the key for us since she is so visual but yet has severe

motor/apraxia

> issues. Autism is so misunderstood by most people unless you live

it. I am

> thinking about you, take care of yourself.

> Kathy

> mom to Hannah-13, and Abby-9, ASD, UC, and SCD restarted for 2 weeks

> p.s there is funding where we live to help families with Autistic

kids for

> things they need. We have gotten it twice. The

> maximum is about $800 a year. You just apply and the committee

meets and as

> long as you are eligible you will get a check.

> Is there any funding available like that in your area to help with

the cost

> of supplements, equipment, etc.?

>

> > As I said, I am starting to think along the lines of supplements

but

> > I am really having a hard time making ends meet. The financial

> > sacrifice to get supplements would have to be a sure thing. What

I

> > meant by trying different supplements is not a matter of wanting

to

> > see what he needs but what I can get down him or he can tolerate.

> > Before SCD I bought a big canister of SuperNuThera only to throw

it

> > away due to it making him too hyper. The task of finding a multi-

> > vitamin that is SCD legal and that I can force him to take seems

> > impossible. Since he is allergic to fish, I don't know if there

is

> > an SCD legal EFA he can take. I used to give him TMG but stopped

> > that since it is illegal. Where did you find a legal version of

DMG?

> >

> > As for what he is lacking developmentally for age, he is 5 and

can't

> > talk. This is my #1 concern and the source of my

disappointment. I

> > feel that I am giving myself 150% with my main desire to get him

to

> > talk and that is the only thing he isn't doing. Honestly I am at

the

> > point of giving up because I feel it is hopeless. If after all

this

> > effort he cannot talk at age 5, what makes me think he will talk

by

> > age 10, 15 or 50?

> >

> > 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

> >

June 29, 2004

I am not keeping a food journal but constantly keeping in my head

what is going on. Since SCD he has been fairly consistent but his

diet has been anything but. What I feed him is based on what is in

the fridge. If I buy grapes they are eaten until they are gone then

there are none for a week or two. This is how I survive but I think

with this type of feeding, reactions to foods would be fairly obvious.

As for his fish allergy, I suspected he had a problem with fish

because whenever we ate at Wahoo's and we would have fish he would

have horrible diarrhea but was OK with their chicken. The manager

checked over their ingredients carefully to make sure they were GF.

Then when he had an allergy scratch tests, he had lots of 1's and 2's

but fish was 4. I have not given him fish since that test. I asked

Kirkman's if they thought considering that test result if I should

still try CLO and they said it would not be safe for him.

I did buy the Freeda vitamins but felt they were too hard to crush up

to use with him. How do you crush them? This would be easy to try

since I have a bottle at home. My husband and I have been taking

them thinking they were not kid-friendly.

> ,

>

> Is it possible that your son is actually NOT tolerating all of

these

> foods? Even though his stools are better, maybe he is being

> affected behaviorally or cognitively. Did you keep a food journal

> when you started adding new foods? Maybe you could go back to some

> kind of modified intro diet and add these foods slowly again.

Write

> down how he reacts, if he does. We have been doing SCD for a year

> now, and my son cannot tolerate a lot of the foods on your list.

> I'm not saying this is the case for your son, but just that it's

> possible.

>

> Have you tried the ultra-freeda vitamins from Lucy's Kitchen Shop?

> That is what Elaine recommends and they can be crushed easily and

> put into juice or pearsauce, even peanut butter or something like

> that. I think supplementation is inevitable with these kids. It's

> just finding the ones that your child needs. Does your son have a

> true allergy to fish? Or is it an IgG response?

>

> Gia

> Mom to Jack (ASD and SCD 1 year)

June 29, 2004

Just curious....ever try heavy metal chelation? (just a mom,

not a moderator!)

> >

> > , I don't know if this is helpful or not but you can order

> small

> > sample sizes from Kirkman. I have done it several times

> > only to find that like you, I did not use it. But only invested

a

> couple of

> > dollars. My daughter is 9 and babbled as a baby but never really

> said any

> > significant words until we started PECs system at age 5. She is

9

> now,

> > almost 10 and knows 100's of words but is very apraxic so they

> don't always

> > come out, is very jargony and still cries for attention sometimes

> instead of

> > using words. Fortunately she has really good receptive skills.

The

> > language is there but you have to push her to use it. The PEC's

> book was

> > the key for us since she is so visual but yet has severe

> motor/apraxia

> > issues. Autism is so misunderstood by most people unless you

live

> it. I am

> > thinking about you, take care of yourself.

> > Kathy

> > mom to Hannah-13, and Abby-9, ASD, UC, and SCD restarted for 2

weeks

> > p.s there is funding where we live to help families with Autistic

> kids for

> > things they need. We have gotten it twice. The

> > maximum is about $800 a year. You just apply and the committee

> meets and as

> > long as you are eligible you will get a check.

> > Is there any funding available like that in your area to help

with

> the cost

> > of supplements, equipment, etc.?

> >

> > > As I said, I am starting to think along the lines of

supplements

> but

> > > I am really having a hard time making ends meet. The financial

> > > sacrifice to get supplements would have to be a sure thing.

What

> I

> > > meant by trying different supplements is not a matter of

wanting

> to

> > > see what he needs but what I can get down him or he can

tolerate.

> > > Before SCD I bought a big canister of SuperNuThera only to

throw

> it

> > > away due to it making him too hyper. The task of finding a

multi-

> > > vitamin that is SCD legal and that I can force him to take seems

> > > impossible. Since he is allergic to fish, I don't know if

there

> is

> > > an SCD legal EFA he can take. I used to give him TMG but

stopped

> > > that since it is illegal. Where did you find a legal version

of

> DMG?

> > >

> > > As for what he is lacking developmentally for age, he is 5 and

> can't

> > > talk. This is my #1 concern and the source of my

> disappointment. I

> > > feel that I am giving myself 150% with my main desire to get

him

> to

> > > talk and that is the only thing he isn't doing. Honestly I am

at

> the

> > > point of giving up because I feel it is hopeless. If after all

> this

> > > effort he cannot talk at age 5, what makes me think he will

talk

> by

> > > age 10, 15 or 50?

> > >

> > > 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

> > >

June 29, 2004

Yes, I did. I saw very little benefit but worse behaviours and a

constant bad mood. I followed Andy's protocol and did ALA only since

my son did not have recent exposure (as far as I could determine) and

did not have high lead. My son's school was overjoyed when I told

them I was going to quit. It didn't matter if it was an on day or

off day - he was horrible and regressing.

> > >

> > > , I don't know if this is helpful or not but you can

order

> > small

> > > sample sizes from Kirkman. I have done it several times

> > > only to find that like you, I did not use it. But only

invested

> a

> > couple of

> > > dollars. My daughter is 9 and babbled as a baby but never

really

> > said any

> > > significant words until we started PECs system at age 5. She

is

> 9

> > now,

> > > almost 10 and knows 100's of words but is very apraxic so they

> > don't always

> > > come out, is very jargony and still cries for attention

sometimes

> > instead of

> > > using words. Fortunately she has really good receptive

skills.

> The

> > > language is there but you have to push her to use it. The

PEC's

> > book was

> > > the key for us since she is so visual but yet has severe

> > motor/apraxia

> > > issues. Autism is so misunderstood by most people unless you

> live

> > it. I am

> > > thinking about you, take care of yourself.

> > > Kathy

> > > mom to Hannah-13, and Abby-9, ASD, UC, and SCD restarted for 2

> weeks

> > > p.s there is funding where we live to help families with

Autistic

> > kids for

> > > things they need. We have gotten it twice. The

> > > maximum is about $800 a year. You just apply and the committee

> > meets and as

> > > long as you are eligible you will get a check.

> > > Is there any funding available like that in your area to help

> with

> > the cost

> > > of supplements, equipment, etc.?

> > >

> > > > As I said, I am starting to think along the lines of

> supplements

> > but

> > > > I am really having a hard time making ends meet. The

financial

> > > > sacrifice to get supplements would have to be a sure thing.

> What

> > I

> > > > meant by trying different supplements is not a matter of

> wanting

> > to

> > > > see what he needs but what I can get down him or he can

> tolerate.

> > > > Before SCD I bought a big canister of SuperNuThera only to

> throw

> > it

> > > > away due to it making him too hyper. The task of finding a

> multi-

> > > > vitamin that is SCD legal and that I can force him to take

seems

> > > > impossible. Since he is allergic to fish, I don't know if

> there

> > is

> > > > an SCD legal EFA he can take. I used to give him TMG but

> stopped

> > > > that since it is illegal. Where did you find a legal version

> of

> > DMG?

> > > >

> > > > As for what he is lacking developmentally for age, he is 5

and

> > can't

> > > > talk. This is my #1 concern and the source of my

> > disappointment. I

> > > > feel that I am giving myself 150% with my main desire to get

> him

> > to

> > > > talk and that is the only thing he isn't doing. Honestly I

am

> at

> > the

> > > > point of giving up because I feel it is hopeless. If after

all

> > this

> > > > effort he cannot talk at age 5, what makes me think he will

> talk

> > by

> > > > age 10, 15 or 50?

> > > >

> > > > 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

> > > >

June 29, 2004

Reading all of these emails is really emotional. my 4 and a half year old lost

all of his language around his 3rd birthday. He had hundreds of words (no

sentences but even some chunks). He also loved puzzles, knew numbers, shapes,

colors, letters, etc. He had a major regression and appears but we're not sure

either not to know or to have no interest in any of these things. We have him

in a good school and have seen tons of speacialists, therapists of all sorts.

He takes very small steps. I often feel dissapointed, more like devastated, but

then I remember that he as so many of our children are so in touch even though

they seem not to be. I feel like he knows when I am down and feeling defeated,

I try to be positive and keep plugging away. There are so many people trying to

find ot the mystery behind this and I know that we'll all figure it out.

On one hand it is wonderful to read and hear about all of these children that

have made miraculous recoveries from SCD, gFcf, B12 shots, chelation, different

therapies, etc And on the other hand, it feels like it is flying right above

our noses and we just can't seem to reach it. It is incredibly frustrating.

Just remember, as I need to remind myself, celebrate every small step. Every

night, think of something positive that your child did and you will sleep

better and wake up with new energy to approach the day that lies ahead. Good

luck. We are with you-

Michal (son , PDD 4 an 1/2.)

Kane wrote: " Where did you find a legal version

of DMG? "

I have used two different brands of DMG, Food Science and Country Life, both

of which are pure DMG. I haven't seen either of these brands listed as legal

or illegal at the pecanbread website, and since this played a key factor in

accelerating her language and breaking the echolalia, I'm not sure that I

would have been convinced to give it up too easily if it weren't " legal " .

" As for what he is lacking developmentally for age, he is 5 and can't

talk. This is my #1 concern and the source of my disappointment. "

I completely understand your disappointment, . I'm certain that you

will always do what is best for your children, no matter what you decide,

even if that means temporarily " giving up " . You may get the clarity you need

to move forward.

(4 1/2 yo daughter, ASD, SCD 2 months, GF/CF/SF 9 months)

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

June 29, 2004

I am familiar with Andy's protocol. ALA is known to stir up a yeast

overgrowth, which in turn stirs up behavior. My son is the same way.

He can not tolerate ALA b/c his yeast gets out of control and he

becomes what we call " evil boy " . Anyway, at the most recent Autism

One conference Dr. Buttar spoke. (you could read what he had to say

online) Anyway, I am telling you this because he developed a new way

to chelate. He is using a transdermal DMPS. (this is Very new) This

is very exciting b/c it bypasses the gut and does not effect bacteria

and yeast overgrowth. No behaviors! You may be interested in looking

into this. Dr. Neubrander in NJ and Dr. McCandless have both started

using this form of chelation. You could even contact Dr. Buttar

himself. Just a thought.

& just a mom!

> > > >

> > > > , I don't know if this is helpful or not but you can

> order

> > > small

> > > > sample sizes from Kirkman. I have done it several times

> > > > only to find that like you, I did not use it. But only

> invested

> > a

> > > couple of

> > > > dollars. My daughter is 9 and babbled as a baby but never

> really

> > > said any

> > > > significant words until we started PECs system at age 5. She

> is

> > 9

> > > now,

> > > > almost 10 and knows 100's of words but is very apraxic so

they

> > > don't always

> > > > come out, is very jargony and still cries for attention

> sometimes

> > > instead of

> > > > using words. Fortunately she has really good receptive

> skills.

> > The

> > > > language is there but you have to push her to use it. The

> PEC's

> > > book was

> > > > the key for us since she is so visual but yet has severe

> > > motor/apraxia

> > > > issues. Autism is so misunderstood by most people unless you

> > live

> > > it. I am

> > > > thinking about you, take care of yourself.

> > > > Kathy

> > > > mom to Hannah-13, and Abby-9, ASD, UC, and SCD restarted for

2

> > weeks

> > > > p.s there is funding where we live to help families with

> Autistic

> > > kids for

> > > > things they need. We have gotten it twice. The

> > > > maximum is about $800 a year. You just apply and the

committee

> > > meets and as

> > > > long as you are eligible you will get a check.

> > > > Is there any funding available like that in your area to help

> > with

> > > the cost

> > > > of supplements, equipment, etc.?

> > > >

> > > > > As I said, I am starting to think along the lines of

> > supplements

> > > but

> > > > > I am really having a hard time making ends meet. The

> financial

> > > > > sacrifice to get supplements would have to be a sure

thing.

> > What

> > > I

> > > > > meant by trying different supplements is not a matter of

> > wanting

> > > to

> > > > > see what he needs but what I can get down him or he can

> > tolerate.

> > > > > Before SCD I bought a big canister of SuperNuThera only to

> > throw

> > > it

> > > > > away due to it making him too hyper. The task of finding a

> > multi-

> > > > > vitamin that is SCD legal and that I can force him to take

> seems

> > > > > impossible. Since he is allergic to fish, I don't know if

> > there

> > > is

> > > > > an SCD legal EFA he can take. I used to give him TMG but

> > stopped

> > > > > that since it is illegal. Where did you find a legal

version

> > of

> > > DMG?

> > > > >

> > > > > As for what he is lacking developmentally for age, he is 5

> and

> > > can't

> > > > > talk. This is my #1 concern and the source of my

> > > disappointment. I

> > > > > feel that I am giving myself 150% with my main desire to

get

> > him

> > > to

> > > > > talk and that is the only thing he isn't doing. Honestly I

> am

> > at

> > > the

> > > > > point of giving up because I feel it is hopeless. If after

> all

> > > this

> > > > > effort he cannot talk at age 5, what makes me think he will

> > talk

> > > by

> > > > > age 10, 15 or 50?

> > > > >

> > > > > 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

> > > > >

June 29, 2004

" I did buy the Freeda vitamins but felt they were too hard to crush

up to use with him. How do you crush them? "

I just put the vitamin in a little bowl and crushed it with the back

of a spoon. It really was not hard at all. I also recall someone

posting that they crushed it between two spoons. So that is another

possibility.

Gia

June 29, 2004

:

na sounds very similar to your son. She is 8 years old now and

6 mos on the SCD. At 5 years age, she only had 20 words if that of

speach. She is now off the hook singing and everything else. However,

the cognitive piece of repeating things over many times is driving us

all insane.

Here is my input for you. 3 items. A) Ask your doctor for

Leucovorin. na takes 2 10 mg tablets once in the am and when

she comes home from school. Leucovorin is folic acid. This is what

the resident bacteria make in the colon that in order for the body to

absorb b-12. I found this info in a medical study found on the

internet. We learned that na's speech seem to focus around when

she received the leucovorin. At first, she would not speak coming

home from school, then after about 1 hour after the next pill, speach

ensued. The longer we were on the diet, the less amount of time it

took for the leucovorin's effects to take place. It was speach for

us. Soon after it dropped down to a half hour, 20 mins, 10 mins and

believe it or not 3 minutes after taking it. Today, I can skip one

10mg tablet and it does not make a difference.

Grapes are high in phenols, not that phenols are the main

culprit. na used to eat a skinless turkey sausage and when it

was cooked, it would pierce like a " grape " when you put a fork

through it. What we learned was this, maybe, just maybe, the bad

behavior we were getting from na was that she could not break

down the texture of foods that were cooked, and when pieced, "

popped " like a grape. Maybe it was the texture of the food that

could not be broken down. Hence we removed grapes and the skinless

turkey sausage and the incidents stopped.

C) We use the Kirkman DDP-IV Enzyme complete. 2 capsules at each

meal.. Why two? Assume that the acid in their stomachs cause pain

for them. Double the dosage and relieve the stomach from making

acid. The enzymes will help him. Also, less is more on this diet.

We literally have spent thousands on therapies including: 46 rounds

of chelation, 9 rounds of IVIG, Tomatis Therapy, Bioaccustics, B-12

shots everyother day done at home. The diet is the best input

supported by enzymes, b-12 shots, leucovorin tablets (Folic Acid), B-

6 cream from Hopewell Pharmacy and a new one for us NAHD.

Hope this helps!

Jimmy

> My autistic son has now been on this diet for 7 months and I am

> feeling disappointed. Like with GFCF, I saw good gains in the

> beginning but that leveled off with no more improvement. I feel

this

> diet has really helped my son physically (finally solid stools!),

but

> developmentally he is not improving. I am actually starting to

> consider giving up. He is taking Houston's SCD legal enzymes in

> addition to diet. Here is what he eats in case anyone has any

ideas:

>

> grilled chicken

> sugar-free bacon

> pork rinds

> homemade meatloaf

> raisins

> grapes

> apple slices

> smoothies (strawberry, banana, yogurt & apple juice)

> Lois Lang bread with peanut butter

> homemade yogurt (cow's milk & Yogourmet starter)

> cinnamon almond cookies

> zucchini muffins

> banana muffins

> coffee cake

> peanut butter cake

> banana waffles

> cooked carrots

> broccoli

> Welch's white grape juice (diluted)

>

> Supplements: Peptizyde, Zyme Prime, zinc (Kirkman's capsules) &

> vitamin C

>

> I am not giving him a multi-vitamin since what little I have tried

I

> couldn't get down him and because I am too poor to buy product

after

> product that goes unused. I am starting to wonder though if the

> given him EFA's because he is allergic to fish and flax is

illegal.

> I tried chelation for a few months before SCD but felt it was

making

> him worse instead of better. He also has celiac disease. Though

he

> was casein free for over 2 years, he has never reacted to dairy.

Any

> ideas for the next step?

>

June 29, 2004

I have used one of those heavy stone bowls (mortar and pestle) for crushing

garlic and it worked really well.

Kathy

> " I did buy the Freeda vitamins but felt they were too hard to crush

> up to use with him. How do you crush them? "

>

> I just put the vitamin in a little bowl and crushed it with the back

> of a spoon. It really was not hard at all. I also recall someone

> posting that they crushed it between two spoons. So that is another

> possibility.

>

> Gia

>

> 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

>

June 29, 2004

My son was reading and writing before he turned 4 years old. He knew all of his

colors and some letters and sounds before he turned 2 years of age. He went in

for his four year old check up on April 28, 2004. The doctor told me they had

missed his MMR at 12-15 months. He received the normal MMR, Hep B, DVTAP,

Polio. The only thing wrong with my son was he had a confirmed milk protein

allergy. By the second week after the vaccines he could not read or write. My

son talked like a six year old before the vaccines. Everyone always commented

on his great speech ability. His speech regressed. He started to call me mama.

He had not called me that for years. I have a DAN doctor who is treating him.

After one week of treatment, he was reading and writing again. His language is

dramatically improved. The SCD diet is very important. It is the key to the

whole treatment plan of DAN, at least for my son. Supplements are important.

The biggest problem we have had is controlling

the constipation. He displays autism behavior when the constipation is bad.

michal kahan wrote: