Re: Tried many things, don't know what to do next

April 22, 2004

Hello, ,

I'm not one of the " phenol " people, but what stood out for me in

your son's food list was the large number of high phenol foods (see,

you learn lots reading this list).

Also from what I've read, he WON'T show improvements until you pull

those foods. (If he is phenol sensitive). I know how hard it is to

take away the only foods your child will eat -- I did it at the

beginning of SCD, and still sometimes feel like the meanest mommy on

earth when looks at bread bags in the store and says, " oooohh,

yummy bread " and SMELLS it! However, she wouldn't be better if I

had just let her go on eating bread and cream cheese sandwiches

every day.

Among the supplements you've tried, did you try the No-Fenol that is

legal?

I'm sure some of the " phenol people " will have better advice than

I do.

Sue (From Pickering)

Mom to , 4.5, formerly? ASD, SCD since March 16/03

April 22, 2004

To be quite honest his diet seems really unhealthy. What would happen

if you took away the fruit, honey and hot dogs for a while and put

meat and veggies on the table. He might starve for a few days but

then he might start eating healthier. You might have already tried this.

You didn't say the results of the tests you have done already. That

might give people on the list insight into what's going wrong for him.

> I've been an avid reader/listener to this and other Autistic online

> help groups for over 3 years now, this is my first posting, so I

> apologize in advance if it gets long. I have a lot that's been

> bottled up for these past 3 years of searching for and trying

> different things to help my son with his behavior and digestive

> problems. My son is 5.4 yrs old, autistic. We tried GF/CF for

> 4 months, no noticeable improvements. We tried digestive enzymes

> also with no noticeable improvements. We tried SCD for 3 months, he

> lost weight, he looked sickly, we didn't see any real positive

> changes. We added illegal hotdogs (he WON'T do legal hotdogs)

> after 3 months because he was clearly not getting enough protein.

> The hotdogs gave him his energy back. We saw no difference in

> behavior or bowel movements. His diet now consists of legal goat

> and/or cow yogurt with strawberries and honey added; bananas, mangos,

> raisins, grapes, hot dogs, granola chews (honey, butter,nuts,

> raisins, coconut), legal apple cidar. That's it. I have tried

> several receipes found in the book and on all three SCD recipe

> websites. We are suspicious of phenols, but if you look at his diet,

> if we took those out, there wouldn't be anything left. We gave him

> french fries for the first time in 5 months. He ate them up, he was

> happy, and we saw no negative reaction what so ever. How can we tell

> if anything is working for him? How do you determine if your child

> tolerates a food? By behavior changes and/ or bowel movements only?

> has had the same weird bowel movements that he has had for 3

> years, regardless of what he eats. He rarely ever has diarrhea or is

> constipated. His bowel movements are soft, pasty, light in color,

> and have a neutral or no smell at all. We have taken him to a DAN!

> doctor off and on for a few years now. He put on a dozen or so

> supplaments. All of which are SCD legal. I am really concerned

> about the long term effects of the method in which we are giving the

> supplaments to him. We open up the capsules 3 times a day, mix with

> a little apple cidar and give by a dropper. I think this could be

> hurting his esophogous because the inside of those supplamens are

> extremely acidic. And he has had prevoius problems with acid reflux

> as a baby and toddler. I am thinking about taking him off all of the

> supplaments, except for the 5HTP (which is the only supplament that

> we saw any difference-he started sleeping through the night for the

> first time.) He won't swallow pills and most don't come in a liquid

> form.

>

> We just received 5 tests in the mail for Great Smokies Diagnostice

> labs for the Autism Assessment Protocol; heavy metals, amino acid,

> essential fatty acids, intestinal permeability, and digestive

> functioning. We've done other tests, Comprehensive Stool Analysis,

> Food Allergy, Organic Acids test, which all led to putting on

> all of the supplaments, and which I am questioning if they are really

> helping him or hurting him. It seems like so much work because we

> don't know if any of this is working. Should I take him off

> everything and start over? If there are no signs, how do you know?

> I've mostly been going on gut instinct, but I think my gut has run

> it's course. Any comments or any suggestions would be extremely

> helpful and greatly appreciated.

April 22, 2004

,

When you tried SCD for 3 months, did you start with an intro? What

foods was he eating for those 3 months? Can he eat eggs or peanut

butter? Those are very good sources of protein. I don't know if

you are comfortable with this, but what about stopping all

supplements and doing the intro or a modified intro for a few days?

Then slowly add new foods. Also, at the DAN! Conference this

weekend, Dr. Kartzinel suggested going on supplement holidays once

in a while. He said sometimes a supplement that worked really well

2yrs. ago, might actually be causing problems now. Definitely keep

a journal and record everything you see, good or bad. I know it is

hard to go back, but if you can, I think it will answer a lot of

questions for you. You will just have to go slow, and that is

difficult, I know. Good luck, with whatever you decide!

Gia

Mom to Jack (5 and ASD) and (2)

SCD 10 mos.

April 22, 2004

Sue (From Pickering)

We did try " No-Phenol " before it was SCD legal with no obvious

improvements. I don't know if it was because it was not SCD legal or

if it was because he does not have a phenol problem. I bought a

bottle of the new SCD version. I think I'll give it a try. Thanks

for your help

> Hello, ,

>

> I'm not one of the " phenol " people, but what stood out for me in

> your son's food list was the large number of high phenol foods

(see,

> you learn lots reading this list).

>

> Also from what I've read, he WON'T show improvements until you pull

> those foods. (If he is phenol sensitive). I know how hard it is to

> take away the only foods your child will eat -- I did it at the

> beginning of SCD, and still sometimes feel like the meanest mommy

on

> earth when looks at bread bags in the store and

says, " oooohh,

> yummy bread " and SMELLS it! However, she wouldn't be better if I

> had just let her go on eating bread and cream cheese sandwiches

> every day.

>

> Among the supplements you've tried, did you try the No-Fenol that

is

> legal?

>

> I'm sure some of the " phenol people " will have better advice

than

> I do.

>

> Sue (From Pickering)

> Mom to , 4.5, formerly? ASD, SCD since March 16/03

April 22, 2004

Parent616,

To be quite honest his diet seems really unhealthy. What would happen

> if you took away the fruit, honey and hot dogs for a while and put

> meat and veggies on the table. He might starve for a few days but

> then he might start eating healthier. You might have already tried

this.

I think my mom and my husbancd would really start to question my

sanity. But, I think it has to be done. It's the only way. I know

his diet isn't healthy, it's never been healthy. It's a constant

battle of the lesser of the many evils. After looking into many diet

options for , GF/CF & S/F (soy free), SCD, Failsafe, Feingold,

and some other variations of these, every food that we have tried for

one diet is a " No-NO' on one or more of the other lists. Since we

don't have any obvious markers of what can and cannot tolerate

(i.e., changes in bowel movements, changes in behavior, rashes,

etc.) it's hard to know which food list is right for him.

You didn't say the results of the tests you have done already. That

> might give people on the list insight into what's going wrong for

him.

The results of his previous tests are: possible yeast problems, fat

malabsorption, liver enzyme deficiency, and several vitamin mineral

and organic acid deficiencies.

I will try replacing the honey and hotdogs with meat and veggies.

I'll let you know the results. Thanks for your help and concern.

But most of all, thanks for listening.

L.

> > I've been an avid reader/listener to this and other Autistic

online

> > help groups for over 3 years now, this is my first posting, so I

> > apologize in advance if it gets long. I have a lot that's been

> > bottled up for these past 3 years of searching for and trying

> > different things to help my son with his behavior and digestive

> > problems. My son is 5.4 yrs old, autistic. We tried GF/CF

for

> > 4 months, no noticeable improvements. We tried digestive enzymes

> > also with no noticeable improvements. We tried SCD for 3 months,

he

> > lost weight, he looked sickly, we didn't see any real positive

> > changes. We added illegal hotdogs (he WON'T do legal hotdogs)

> > after 3 months because he was clearly not getting enough

protein.

> > The hotdogs gave him his energy back. We saw no difference in

> > behavior or bowel movements. His diet now consists of legal goat

> > and/or cow yogurt with strawberries and honey added; bananas,

mangos,

> > raisins, grapes, hot dogs, granola chews (honey, butter,nuts,

> > raisins, coconut), legal apple cidar. That's it. I have tried

> > several receipes found in the book and on all three SCD recipe

> > websites. We are suspicious of phenols, but if you look at his

diet,

> > if we took those out, there wouldn't be anything left. We gave

him

> > french fries for the first time in 5 months. He ate them up, he

was

> > happy, and we saw no negative reaction what so ever. How can we

tell

> > if anything is working for him? How do you determine if your

child

> > tolerates a food? By behavior changes and/ or bowel movements

only?

> > has had the same weird bowel movements that he has had for

3

> > years, regardless of what he eats. He rarely ever has diarrhea

or is

> > constipated. His bowel movements are soft, pasty, light in

color,

> > and have a neutral or no smell at all. We have taken him to a

DAN!

> > doctor off and on for a few years now. He put on a dozen or

so

> > supplaments. All of which are SCD legal. I am really concerned

> > about the long term effects of the method in which we are giving

the

> > supplaments to him. We open up the capsules 3 times a day, mix

with

> > a little apple cidar and give by a dropper. I think this could

be

> > hurting his esophogous because the inside of those supplamens are

> > extremely acidic. And he has had prevoius problems with acid

reflux

> > as a baby and toddler. I am thinking about taking him off all of

the

> > supplaments, except for the 5HTP (which is the only supplament

that

> > we saw any difference-he started sleeping through the night for

the

> > first time.) He won't swallow pills and most don't come in a

liquid

> > form.

> >

> > We just received 5 tests in the mail for Great Smokies

Diagnostice

> > labs for the Autism Assessment Protocol; heavy metals, amino

acid,

> > essential fatty acids, intestinal permeability, and digestive

> > functioning. We've done other tests, Comprehensive Stool

Analysis,

> > Food Allergy, Organic Acids test, which all led to putting

on

> > all of the supplaments, and which I am questioning if they are

really

> > helping him or hurting him. It seems like so much work because

we

> > don't know if any of this is working. Should I take him off

> > everything and start over? If there are no signs, how do you

know?

> > I've mostly been going on gut instinct, but I think my gut has

run

> > it's course. Any comments or any suggestions would be extremely

> > helpful and greatly appreciated.

April 22, 2004

Gia,

No, we did not start out with the intro diet. I tried a few of the

soups, he gagged, wouldn't eat it. We even tried giving it to him

from his medicine dropper, still gagged, refused. When we started,

he ate mostly bananas, mangos, grapes, raisins, pecan nut chews

(honey, butter, coconut & raisins) peanut butter and carrot curls.

We started him on the SCD yogurt about 3 weeks in because he did not

seem to have a problem with it. We could try eggs again, he's never

liked eggs. We actually stopped peanut butter when we started the

yogurt because I was suspicious about the phenol affect. I think

stopping the supplaments for awhile would be a good idea. We

actually did that recently because he was sick. He seemed fine with

it. I think I'll do it for a longer period of time and maybe

reintroduce them one at a time, VERY SLOWLY. The hardest part of all

of this is just not being able to tell what is and what is not

working. Thanks so much for your help and suggestions, it means so

much. Take care.

L.

> ,

> When you tried SCD for 3 months, did you start with an intro? What

> foods was he eating for those 3 months? Can he eat eggs or peanut

> butter? Those are very good sources of protein. I don't know if

> you are comfortable with this, but what about stopping all

> supplements and doing the intro or a modified intro for a few

days?

> Then slowly add new foods. Also, at the DAN! Conference this

> weekend, Dr. Kartzinel suggested going on supplement holidays once

> in a while. He said sometimes a supplement that worked really well

> 2yrs. ago, might actually be causing problems now. Definitely keep

> a journal and record everything you see, good or bad. I know it is

> hard to go back, but if you can, I think it will answer a lot of

> questions for you. You will just have to go slow, and that is

> difficult, I know. Good luck, with whatever you decide!

>

> Gia

> Mom to Jack (5 and ASD) and (2)

> SCD 10 mos.

April 22, 2004

" The results of his previous tests are: possible yeast problems,

fat malabsorption, liver enzyme deficiency, and several vitamin

mineral and organic acid deficiencies. "

Have you done whatever was suggested to correct these

problems?

Antifungal drugs

Enzymes with lipase and whatever other enzymes he was

deficicient in

Giving the needed vitamins and minerals

Did addressing those issues make a difference?

When you said he would not eat the legal hot dogs, what does

that mean?

How many times did you attempt to get him to eat them? How

long before you gave him the type he really wanted?

What happens when you offer him food that isn't what he wants?

Does he usually get to pick what he eats?

Just trying to get some more information.

Jody

mom to -5 and -7

SCD 15 months

April 22, 2004

" When we started, he ate mostly bananas, mangos, grapes,

raisins, pecan nut chews (honey, butter, coconut & raisins)

peanut butter and carrot curls. "

Well, of the things you listed, the only thing that is pretty easy to

digest is the bananas.

Raw fruits, dried fruits, coconut, nuts and deep fried foods are all

quite a bit more difficult to digest.

My guess would be that his system has not healed much by

eating these foods from the beginning.

I know it is hard, but the best results have been seen by starting

with the intro and eating only cooked meats, fruits and veggies

until the gut has time to heal.

Then slowly add new foods one at a time.

Jody

mom to -5 and -7

SCD 15 months

April 22, 2004

Hi, I have a child that is pretty much non-verbal ( can use one and

sometimes two words together). She is also very picky and we have done it

all as well. She also has a lot of food allergies and we know what they are

due to SAGE testing. She is also sensitive to phenols. She eats, SCD

pancakes, cashew butter, a little bit of honey--not much, legal hot dogs,

pork, chicken, beef, turkey, a little SCD ketchup, mango, pears,

pomegranate, carrot, green beans, cauliflower, peas, juice from the boiled

fruit, garlic, eggs, bacon, pork rinds. She will not eat the veggies plain

but LOVES any meatloaf so I put veggies in that. I am going to get a juicer

to get more veggies in her. I was also very skeptical that I could do this

without the almond, banana, grape, orange and pineapple but have to due to

her behaviors and terrible reactions. It can be done. It is hard but for me

it's worth it if we can keep control of problem behaviors. I have only been

doing this for almost 9 weeks and also felt like quitting but then I see her

stools and all the yeast she is eliminating and the support, help and advice

from this group has kept me going. She has also lost weight, looks sickly

and has dark circles almost all the time. It's a little scary but tell

myself she is actually eating a lot healthier than what she was

eating................waffles, pasta, fries, chips, pretzels and of course a

lot of corn syrup and sugar in juice boxes, etc. We did casein free for 8

years and gluten free for 6 years and I have to tell you that 4 months

gluten free is not long enough to make a difference. The casein is

eliminated pretty quickly but the gluten needs to be given about 6 months to

start making a difference. Also what do the tests show. If he still has a

yeast problem I would give the diet another chance and then have it

re-checked to see if it makes a difference. I hope any of this is helpful to

you, I know how stressful it can be.

Kathy

Abby-9, ASD, UC, SCD since 2-21-04

Tried many things, don't know what to do next