new member

[Guest guest]

In a message dated 8/29/01 5:28:25 PM Pacific Daylight Time, lvlnew@...

writes:

> . I will be in California visiting friends next

> week and would very much like to visit the Organization

> there. Many thanks to Dr. G. for the wonderful work you're doing.

>

> --Elvei

> lvlnew@...

>

>

>

>

What part of Calif. will you be visiting, Elvei?

Tina M. Hendrix

Cure2000@...

Vice-President, California Coalition

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.

[Guest guest]

Hello Tina,

I will be in the Moreno Valley area. I will arrive there Thursday

night, 29Aug01. My friends name and phone number is:

Loretta 909-778-9991 Maybe you can send me your phone number

and I can call you when I get to Calif. My email address is:

lvlnew@...

> >

>

> What part of Calif. will you be visiting, Elvei?

> Tina M. Hendrix

> Cure2000@a...

> Vice-President, California Coalition

> Neuro-Immune Dysfunction Syndromes

> Autism Spectrum Disorder, ADD/ADHD, Learning Disorders,

Hyperactivity, CFS,

> etc.

>

>

>

[Guest guest]

Here are a few things I hope are helpful. Since you say he reacted

worse on soy and corn than the gluten/casein, it could be you need to

remove those things as well - hardly an easy thing to do. There is

some evidence that soy peptides are as troublesome as the

gluten/casein ones. In this case, adding digestive enzymes may break

up all of these things and help the gut back into functioning better.

On the other hand, since you did not see any improvement on the diet,

you may also not see any with enzymes...it may not be a food related

issue. From the first 4 months, other people in your situation ran

about 50% improved with enzymes after seeing no improvement on the

diet and 50% didn't.

Why not give yourself a designated amount of time, like 2 months, and

see how it goes. The enzymes are relatively cheap and quick compared

to most other therapies. Most people say you need to give the diet

about 1 year and it takes longer for an older child, but this became

very problematic for our older kids. 2 months is a more manageable

amount of time. After awhile as my boys got older, I found it more

emotionally stabilizing for our entire family not to get our hopes up

really high. My older son made little progress until he was 5, and it

wasn't until 9 years that he fully recovered from PDD. We use

Peptizyde and Zyme Prime will great results.

Also, maybe not look for outstanding improvement but for some

improvement, and then if you get more over time you will be

pleasantly surprised. I don't analyze every behavior with every meal,

but look for overall patterns, and how they improve week by week

instead of day by day. Anyone can feel bad on a certain day.

I think it would be worth a try because it isn't terribly hard to do,

not that expensive, and you might see some results reasonably

quickly. Enzymes can help in a number of ways to improve overall

health.

.

[Guest guest]

I am a new member from London. I would like to start giving enzymes to my

son, but don't know where can I buy it. Does anybody knows where can I buy

them in UK?

Thanks a lot

Svetlana

[ ] Re: new member

Here are a few things I hope are helpful. Since you say he reacted

worse on soy and corn than the gluten/casein, it could be you need to

remove those things as well - hardly an easy thing to do. There is

some evidence that soy peptides are as troublesome as the

gluten/casein ones. In this case, adding digestive enzymes may break

up all of these things and help the gut back into functioning better.

On the other hand, since you did not see any improvement on the diet,

you may also not see any with enzymes...it may not be a food related

issue. From the first 4 months, other people in your situation ran

about 50% improved with enzymes after seeing no improvement on the

diet and 50% didn't.

Why not give yourself a designated amount of time, like 2 months, and

see how it goes. The enzymes are relatively cheap and quick compared

to most other therapies. Most people say you need to give the diet

about 1 year and it takes longer for an older child, but this became

very problematic for our older kids. 2 months is a more manageable

amount of time. After awhile as my boys got older, I found it more

emotionally stabilizing for our entire family not to get our hopes up

really high. My older son made little progress until he was 5, and it

wasn't until 9 years that he fully recovered from PDD. We use

Peptizyde and Zyme Prime will great results.

Also, maybe not look for outstanding improvement but for some

improvement, and then if you get more over time you will be

pleasantly surprised. I don't analyze every behavior with every meal,

but look for overall patterns, and how they improve week by week

instead of day by day. Anyone can feel bad on a certain day.

I think it would be worth a try because it isn't terribly hard to do,

not that expensive, and you might see some results reasonably

quickly. Enzymes can help in a number of ways to improve overall

health.

.

[Guest guest]

I understand completely about getting your hopes up. I guess because the nature

of autism is so undefined all the options seem equally undefined. Sort of try

it and see. But I keep figuring that if each thing I try doesn't do anything,

then it's on the next. Because I'm the only one who's going to keep trying. On

the bottom of this note, I've attached a beautiful poem I think that tells it

all. I encourage you to try. If it can bring him out of his fog even a little

bit, it's worth it!

>My Little Masterpiece

>Are you with me little one?

>Have the day's events soaked in once the day is done?

>

>Is the path that mommy chooses for you clear?

>I only do what I think is best for you my dear.

>

>I cannot stand to see you lost.

>It will be the end of me, before I allow my efforts tossed.

>

>Day in and day out, my mind is in constant motion.

>Thinking of ways to reach you & teach you. There is no end to my

>devotion.

>

>Do you go through the days that I have packed for you, in vain?

>Would you rather be outside, chasing the rainbows after the rain?

>

>Those miracle moments when your stare so deep inside of me ,

>These are treasures collected in my heart, like rare jewels that I will

>take to my destiny.

>

>How I wish, I could be so ethical, to accept you the way you were.

>To lie in the bed that GOD has made for me, yet I failed to deter.

>

>I wonder where you would be if I left you all alone.

>In your quiet mystical world, where one couldn't even hurt you with a

>stone.

>

>That place where you wouldn't be expected to perform and be up to par.

>For your label would be your excuse and no one would've expected

>anything more.

>

>Yet, I have chosen to make you a part of this judgmental earth.

>And try to defeat the cards that life dealt to me, the day of your birth.

>

>I pray every night, that you forgive me for being so head strong and

>ambitious.

>Perhaps I do take the definition of " tough love " a bit too viscous.

>

>One thing is for sure my love, maybe one day you will understand.

>That mommy loves you with a passion that some would never comprehend.

>

>Though, I work with you through cries and screams, and have even dodged

>a chair or two

>Know that I hear you, know that it hurts me. But I push forward and

>onward, just for you.

>

>Yes I know it would be easier to give up and let you grow at your own

>rate.

>But later in life if I say " Help my son, " they might say, " I am sorry it

>is too late "

>

>Though my days are long, my body tired and my beauty fading day to day..

>

>I know if I leave this earth tomorrow, I would have no regrets to take

>to my grave.

>

>That I did not leave you as a cripple in this world with undeniable

>strife

>I know that I would leave you with the chance to live a fuller brighter

>life.

>

>For now you speak, and now you know your colors, shapes and sizes.

>You know your numbers and how to count, you fill my days with

>surprises.

>

>You know the sky consists of sparkling stars and a sun and moon.

>You go in the potty , you say " more PLEASE " and eat your cereal with a

>spoon

>

>Though many would think that these accomplishments are trivial and small

>

>Only you and I and THOSE LIKE US, would know the glory of it all.

>

>You look for kisses and for hugs something you never used to do.

>Yes, my love you have come so far, I know that it has been hard for you.

>

>Know that I am proud, for you, not I, have made the biggest sacrifice.

>You work so diligently, harder than a typical grown man would in all his

>life.

>

>I will not lie, I do still weep, for the road is long and I know the

>journey is not over

> " How much longer mommy? " you ask...My love, to this question I do not

>have the answer.

>

>I will be with you until the end of time, praying for the strength and

>the patience to prevail.

>Have comfort that you do not have a " typical mother " and I will not let

>you fail.

>

>Know this. You are my life, my soul , you are what drives the blood

>through my veins

>Perhaps God sent you to me unfinished and it is my duty to grab hold of

>the reins.

>

>To finish you, my little masterpiece that I work and toil over everyday

>With never ending devotion and commitment, I wouldn't have it any other

>way .

>

> by Dibra for my beautiful son Adem

[Guest guest]

Hi Alison,

Well done for taking the plunge!!

Not to throw another spanner in the works for you, but is the juice you are

referring to s? If it is be aware that it contains sodium benzoate.

I made a big mistake some time back and gave it to . Unfortunately he

was bouncing off the walls within a few hours as he reacted badly to it (like

many others I believe). I now give him Meridian pear juice from the health

shop and plain water where possible.

[Guest guest]

Hi , thanks for the welcome! Yes I have taken the plunge at last!

The hi juice Oliver currently has is Tesco. It does not have the sodium

benzoate but has sodium metabisulphite! for what its worth and potassium

sorbate. I don't know if these would cause a reaction, I have'nt seen one

yet since he started on it a few days ago.

I am going to buy the meridian pear juice as I noticed a lot of parents use

it with good results. He is also back to drinking through a straw which is

good news, because then I will have a chance of getting the enzymes down him

(when I order them! - have'nt ordered yet as hubby is reading up on the

enzymes too at the mo!)

Chat soon

Take care

Alison x

[Guest guest]

Thanks Lynn, initially when Oliver was diagnosed at 3, he is now 5 and a

half, we had his urine tested at Sunderland University here in the UK and it

showed very high peaks on gluten and very low on casein. We duly put him on

the diet, gf only, and as I recall he started to get better after about 3

months into the diet. Then we removed casein, but with not much change in

behaviour at all, so we just stuck with removing gluten. He was on this diet

for a year, but then we had some bereavements in the family, my father died

very young (this was pretty traumatic) and then both my husbands parents

passed away last year. My hubby and I both had depression big time, I still

do and am being treated for that and it helps me alot to deal with Oliver.

So we stopped the diet back in March this year, I was at an all time low and

just could not carry on with anything at all.

Sorry to go on a bit, its just so hard when there are other issues in your

family life, apart from autism, that parents have to deal with too. We are

still grieving, yes, but we know we have to carry on for the sake of our

children and do the very best we can for them.

Take care

Alison x

[Guest guest]

HI Alison,

We can't go on meeting like this ........

I have a big boy , Louis aged 8 and Charlie (ASD) who was 5 last

week . It really is nice to know someone who's child eats as little

as mine !!

I , (deep breath) started the enzymes yesterday . Charlie walked to

school as good as gold , smiling and happy - we looked like the

Osmonds on a day out !.

He is currently in with his therapist and he is really letting her

have it - screaming and protesting - not my little boy at all --- ----

Let the head spinning begin !!!!!!

Wish me luck - you may not hear from me for a while - why did I start

this just before half-term !

Best regards

Deborah

>

> Hello everyone

>

> My name is Alison and we have Oliver who is 5 and a half with ASD.

He has

> been GFCF for 8 weeks now, showing not many improvements. He is

limiting his

> food intake more and more and will now only eat toast, choc

brownies and

> whizzers choc speckled eggs.

>

> I have been lurking for a while now on this group and I am also a

member of

> the GFCFKids UK group, as we live in the UK. I have been reading

alot about

> enzymes. Oliver has a lot of sensory integration issues, as most

children

> do! I think. He currently drinks orange hi juice so I will

probably put the

> enzymes in his drink. Or maybe mix them up in his jam or ketchup

on his

> toast! As you can see he doesnt eat much at the moment at all, and

I am

> hoping this will improve when he starts on the enzymes.

>

> Anyway, nice to be hear and any support would be much appreciated.

>

> Thanks

> Alison

> (mum to Sophie 7 NT & Oliver 5 ASD)

> UK

>

>

>

[Guest guest]

He is

limiting his

> food intake more and more and will now only eat toast, choc brownies

and

> whizzers choc speckled eggs.

>

He currently drinks orange hi juice so I will probably

put the

> enzymes in his drink. Or maybe mix them up in his jam or ketchup on

his

> toast!

All of the foods you mention here are high phenols. Not to throw

another issue into your life LOL. But just to consider. If he is

already gfcf and eats basically phenol foods, you might want to start

with the Zyme Prime enzyme, because it helps some children with phenol

issues.

Here is where you can buy that enzyme, altho there may be other

enzymes that would also work for that, but I don't know that because I

don't use other enzymes.

http://www.houstonni.com/

Here is my phenol info

http://home.pacbell.net/cscomp/phenol.htm

I hope that helps and good luck to you!

Dana

[Guest guest]

Eight weeks is a pretty short time relative to removal of the gluten which can

take up to 6 months. Although we saw a big hit within weeks on the removal of

casein from our son's diet, we really saw another boost many months after the

removal of gluten. Just thought this was worth sharing.

Lynn

[Guest guest]

,

Wow. Can't even begin to say how sorry I am for all your losses. That is a

heavy burden to bear....may our God comfort you and give you strength.

On the diet front, I'm sort of talking out loud here. I wonder if (as an

assimilation of many conversations on this board and one in particular with

Devin) if the reason you might not be seeing as much of a benefit from the diet

this time around is that his body doesn't have as much built up as when you

first started. There is much discussion lately about the elimination of foods

doing some healing and then when the offenders are reintroduced, it isn't as

bad, or in fact that it doesn't affect them at all....maybe that's his

situation.

But I would imagine that it's only a matter of time before the effects of the

peptides will be back in force being that you did have a test that confirmed the

issue. I forgot and deleted your previous post. Have you begun using the

enzymes or are you planning on beginning soon? Having the enzymes in his system

will hopefully take care of that and bring more positives.

lynn

[Guest guest]

Alison,

I'm sorry for your losses. May I ask a question? Will you place your

child back on the gluten free diet or are you relying solely on enzymes

now? I'm asking because my son had the high IAG peak through the

Sunderland testing and he has been gluten and casein free a while and

I'm wondering what our options could be with the use of enzymes.

Thanks, JoAnne

alison1wls@... wrote:

>

>

> Thanks Lynn, initially when Oliver was diagnosed at 3, he is now 5

> and a

> half, we had his urine tested at Sunderland University here in the UK

> and it

> showed very high peaks on gluten and very low on casein. We duly put

> him on

> the diet, gf only, and as I recall he started to get better after

> about 3

> months into the diet. Then we removed casein, but with not much

> change in

> behaviour at all, so we just stuck with removing gluten. He was on

> this diet

> for a year, but then we had some bereavements in the family, my father

> died

> very young (this was pretty traumatic) and then both my husbands

> parents

> passed away last year. My hubby and I both had depression big time, I

> still

> do and am being treated for that and it helps me alot to deal with

> Oliver.

> So we stopped the diet back in March this year, I was at an all time

> low and

> just could not carry on with anything at all.

>

> Sorry to go on a bit, its just so hard when there are other issues in

> your

> family life, apart from autism, that parents have to deal with too.

> We are

> still grieving, yes, but we know we have to carry on for the sake of

> our

> children and do the very best we can for them.

>

> Take care

> Alison x

>

>

>

>

>

[Guest guest]

Sorry to tell you (because it's extra work), but I agree with

Dana. GFCF and the Feingold diet went hand in hand in helping

. First things we stopped were apples (he would eat 3 lbs/day) and

grapes (bunches at a time). We saw almost IMMEDIATE results in decreasing

his hyperactivity. This group is very supportive and KNOWLEDGEABLE though,

in helping you through this...Hang in there!

God bless -

, Mom to (5, autistic), and (6,

NT)

[ ] Re: New

Member

He is

limiting his

food intake more and more and will now only eat toast, choc brownies

and

whizzers choc speckled eggs.

He currently drinks orange hi juice so I will probably

put the

enzymes in his drink. Or maybe mix them up in his jam or

ketchup on

his

toast!

All of the foods you mention here are high phenols. Not to throw

another issue into your life LOL. But just to

consider. If he is

already gfcf and eats basically phenol foods, you might want to start

with the Zyme Prime enzyme, because it helps some children with phenol

issues.

Here is where you can buy that enzyme, altho there may be other

enzymes that would also work for that, but I don't know that because I

don't use other enzymes.

http://www.houstonni.com/

Here is my phenol info

http://home.pacbell.net/cscomp/phenol.htm

I hope that helps and good luck to you!

Dana

[Guest guest]

Welcome Roxanne !

Angi

[Guest guest]

Welcome Roxanne,

You have found the right place to be. Everybody here is so helpful. I

also am a homeschooling mom of an apraxic boy. I also homeschool my oldest.

Where are you from?

> I'm also a former spec. ed teacher, but the speech dept was always

> like a foreign land to me. I am a homeschooling mom now.

>

> Roxanne

[Guest guest]

Glad to have ya, Yvette! Let us know how your son does.

> Hi!

> My name is Yvette. Matt is my 8 year old son. I am about to place

my first

> order for an enzyme " supplement " in hopes that it will help my

son's autistic

> symptoms ... thus, my interest in this group.

> Yvette.

>

>

>

[Guest guest]

Hi Margaret,

In response to your first question, go to

www.alasbimnjournal.cl/revistas/4/goldberg.htm

> Hi

>

> I'm a newbie to the list and I have some questions. First, have

any of Dr

> Goldberg's

> findings been published in a peer reviewed journal? If so, please

could

> someone

> let me know where? (DH works at Stanford and has access to the

medical

> library).

>

> Secondly, my DD is SO darn healthy I wonder how she can have a

dysfunctional

> immune system! Other than the occasional cold she just never gets

sick!

> Explain, please!

>

> Margaret

> San CA

>

>

>

[Guest guest]

In a message dated 11/19/01 10:47:46 AM Pacific Standard Time,

MMacGregor@... writes:

> Secondly, my DD is SO darn healthy I wonder how she can have a dysfunctional

> immune system! Other than the occasional cold she just never gets sick!

> Explain, please!

>

>

Hi Margaret,

That is the case many times. i beleive it is because that little immune

system is constantly in a state of arrousal. i am in Santa , CA. We

have a news and update e-mail list. if you're interested, e-mail me

privately. Also, i am in the process of booking a speaking engagement for

Dr. Goldberg in Sacramento and in the Bay Area for The weekend of Jan

19th/20th 2002.

Tina M. Hendrix

Cure2000@...

Vice-President, California Coalition

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.

[Guest guest]

Regina,

Call Dr. goldberg's office. 818-343-1010. i believe you can get in to see

him in the spring. it's worth a try. then while you are waiting , the

coalition can help you with some interim assistance. call or e-mail me for

furhter info. 707-538-2193

In a message dated 11/30/01 12:39:26 PM Pacific Standard Time,

regina.feferman@... writes:

> Hello to everyone,

> My mane is Regina and I have 2.9y. son who was recently diagnosed

> with mild to moderate form of autism. We are trying to do everything

> for him (we started to see DAN! doctor), trying to find good setting

> for him. I belive that autism has relation to biological isssues and

> I'd like to try protocol. As far as I can understand there is a

> long waiting list to see Dr.Goldberg and a can not waist this kind of

> time. We live in St., MN and I can not belive that there is no

> one in the area who tryed this protocol already. (at leas I've seen

> comments from one mom from Twin cities). I want to do something, at

> least I'd like to see the protocol(if it is possible).

> I'll appreciate any help

> Regina

>

>

>

>

Tina M. Hendrix

Cure2000@...

Vice-President, California Coalition

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.

[Guest guest]

In a message dated 1/27/02 1:58:22 AM Central Standard Time,

mjamer37@... writes:

> Hello to All... I am a new Member. I have a son who is 5 yrs old and

> is Autistic as well as non-verbal.

Hi . Welcome to the group. I am new too and have already learned

so much just being here.

Karla

SAHM to

Jackie, , Jenna and Kamryn

Visit the kids sites:

<A HREF= " http://jackierenee88.homestead.com/Jackie1.html " >Jackie</A> <A

HREF= " http://jackierenee88.homestead.com/1.html " ></A> <A

HREF= " http://jacjoejensplace.homestead.com/JennasPage.html " >Jenna</A> <A

HREF= " http://jacjoejensplace.homestead.com/NewBaby.html " >Kamryn</A>

[Guest guest]

Welcome to the group. This a very informative group and you will learn a lot.

My son is 2 1/2 and is pdd. We are not sure if he is apraxic or not. We

started the EFA's right after Xmas and he went from being non verbal to having

20 words and is getting more everyday. His words are not entirely functional

but it is a start and I am overjoyed. You will find much support and kindness

here. It has been a great source for me. Some days, I feel like I can not face

things but I can come here for help and know that there are others out there who

care for what you go through. Email any time the mood strikes you and welcome

again

Stacey

[ ] New Member

Hi Folks, Just joined a few days ago... trying to

follow various posts. Some say to get a formal dx..

see a Developmental Ped. and others say

Neurodevelopmental Ped? My son's Developmental Ped.

stated verbal apraxia.. I am in the process of finding

out from her if that is a " Formal Dx " or I need to

seek that elsewhere. Also, my son is Autistic and I am

curious to find out if parents whose children are

Autistic have used Pro-epa and what the outcome was?

Various parents have stated going to the right SLP and

getting the correct program.. what does a speech

program consist of for children with verbal apraxia?

is currently getting an hour and a half a week at

his IU preschool.. He will be going to Kindergarten in

Sept, what amount of time do you request for speech at

the district level? 4-5 hours a week? Thanks!

__________________________________________________

[Guest guest]

Thank you Stacey for the info. & the Welcome!

--- Stacey <staceydaniel@...> wrote:

> Welcome to the group. This a very informative group

> and you will learn a lot. My son is 2 1/2 and is

> pdd. We are not sure if he is apraxic or not. We

> started the EFA's right after Xmas and he went from

> being non verbal to having 20 words and is getting

> more everyday. His words are not entirely

> functional but it is a start and I am overjoyed.

> You will find much support and kindness here. It

> has been a great source for me. Some days, I feel

> like I can not face things but I can come here for

> help and know that there are others out there who

> care for what you go through. Email any time the

> mood strikes you and welcome again

>

> Stacey

[Guest guest]

Welcome! Little crazy with getting ready for Easter but I will try

and touch base with you next week.

denise

--- In @y..., " Kirt " <khernandez@e...>

wrote:

> Hi,

>

> My name is Dodie. My son is being tested for Apraxia. is 2

1/2 years old. We have been in they state program from 19

> months old. He has been in speech therapy at our local university

for 2 semesters. They are looking into Verbal Apraxia. I have

> been trying to find information on this disorder but it seems to be

rare. Someone told me their may be a link with mercury

> poisoning. Does anyone know if this is true? My son only says a

few words; Da Da, Stop (vary inconsistent always put hand out),

> and that. I have started him with sign language to reduce

frustration. It has seemed to help. My biggest problem is knowing

the

> next step and what to look for.

>

> Please Help,

> Dodie

[Guest guest]

Hi Em and welcome to our wonderful family!

Your symptoms certainly sound like you some type of inflammatory process

going on in your body. Our moderators, and a will supply you with a

ton of links to give you information and your various symptoms. Get as much

knowledge as possible as this is your best tool in getting a good outcome in

the treatment of any disease process.

We are all here with the best " cyber ears " to listen to you and this is a

safe place where you can vent and whine and never feel guilty about it. We

have all been there at one time or another and sometimes have to go back!

This disease is very unpredictable and never affects two people the same way.

So go ahead and ask away, someone has been there, has a link or will just

listen.

Starting this long journey known as Rheumatological diseases is a long slow

process and sometimes frustrating. Keep at it until you feel comfortable

with your caregiver. We have all been made to feel intimidated by the

medical profession at one time or another and sometimes still do. Come here

to visit any time.

Hope you enjoy this group as much as we will enjoy getting to know you. Hope

that you have a safe, somewhat pain free and happy holiday with friends and

family.

Gentle, tender, patriotic angel hugs,

Debs in FL