Intro

[Guest guest]

Beth,

Welcome to the list! I'am Lois and have a son (JJ) 11 who has autism.

bmccallum@... wrote:

> From: <bmccallum@...>

>

> Hi all, my name is Beth and I live in , Australia. I am married, have

4 adult sons and 9 year old twins...boy/girl....and I also have legal custody of

my 4 year old grandson. The twins I.V.F. babies and their names are and

Tara, and my grandson is Hayden.

> has a very rare condition called Persistent Hyperinsulinaemic

Hypoglycaemia of Infancy. PHHI for short. He was born with this condition and

only 58 cases have been diagnosed in Aussieland in the last 25 years. Apart from

this, he has severe ADHD and is Mildly Intellectually disabled due to all the

very low blood sugars he has had over his life. I also feel that he has

Oppositional Defiant Disorder. He is controlled by medication,but we still have

alot of problems with him, as he seems to be slowly deteriorating, so we don't

know what the future holds .Normally these kids are medication free by the age

of 9-10, but his medication has been increased, so he is evidently more severe

than we thought.

> We don't really fit into hypoglycaemic groups or ADHD groups as his is such a

complex case, with the other conditions caused directly by the PHHI.

> We are presently applying for an Aide to work with at school. Tara has

Perceptual Discrimination problems, and Hayden, my grandson, has speech

disorders and is Developmentally Delayed, has severe Atopic Exzema, and we are

at present querying Aspergus Syndrome with him.

> We cope on a day to day basis with the children (who, believe me, are very

very special to us, but it does get very exhausting. takes 84 tablets a

week to control the PHHI, ADDH combination and has had this level of medication

since he was little.

> Anyway, that is my intro. I hope that it fits into the group and that I didn't

misread the aim of your group. I look forward to your feedback and support.

> Beth ô¿ô in Aussie land

>

>

[Guest guest]

Hey all, by way of introduction, let me share with you a riddle, and

ancient Anglo-Saxon teaching tool that was used with children in pre-and

semi-literate days. I wrote it after observing a young woman several years

ago give a training workshop to a family just beginning EIBI with their

son. The title is in fact the riddle's answer. I hope you will be able to

receive the formatting I used, because If not it may read very poorly. I

places explanations of the allusions in the riddle to the right in a teeny

tiny font!

Teacher

I arrive in the seasons after

Love and toil have left their gifts,

Delivering hope to each generation,

A conveyance of word and deed, -refers to shaping language & skill

Sometimes form.

I am not eternal, because I too pass away.

I bestow the pillars of Remembrance. -teachers structure information for

I order the traces, easy learning

Set forth the feat, -last 3 lines refer

to the 3-term

Ensure the binding of all in one. contingency, the smallest

unit of

analysis in ABA,

cur->behavior->consequence

My bold pride is to enter the house,

Touching the smallest most often,

Honoring each, tethering as kin

All who would receive

Pythagorean lore. -the triangle,

associated with

Pythagoras, is also

a diagram of the

response

equivalence relations that are

required for

mediated transfer of

stimulus control

My gifts endure past memory,

Which is my secret, my value.

I am honored in craft, -craft = all building,

making and

construction

Evident in law, -law + the rules we learn

to live by

Praised by arts. -arts = all the

scholarly traditions

**********************************************************

[institutional endorsement of message content not implied]

A. Mulick, PhD

Professor, Department of Pediatrics

Division of Psychology

The Ohio State University

700 Children's Drive

Columbus OH 43205

voice: 614-722-4700

fax: 614-722-4718

[Guest guest]

Leave it to the wise man:-)

Re: [ ] intro

Hey all, by way of introduction, let me share with you a riddle, and ancient

Anglo-Saxon teaching tool that was used with children in pre-and semi-literate

days. I wrote it after observing a young woman several years ago give a

training workshop to a family just beginning EIBI with their son. The title is

in fact the riddle's answer. I hope you will be able to receive the formatting

I used, because If not it may read very poorly. I places explanations of the

allusions in the riddle to the right in a teeny tiny font!

Teacher

I arrive in the seasons after

Love and toil have left their gifts,

Delivering hope to each generation,

A conveyance of word and deed, -refers to shaping language &

skill

Sometimes form.

I am not eternal, because I too pass away.

I bestow the pillars of Remembrance. -teachers structure information

for

I order the traces, easy learning

Set forth the feat, -last 3 lines

refer to the 3-term

Ensure the binding of all in one. contingency, the smallest

unit of

analysis in ABA,

cur->behavior->consequence

My bold pride is to enter the house,

Touching the smallest most often,

Honoring each, tethering as kin

All who would receive

Pythagorean lore. -the triangle,

associated with

Pythagoras, is also

a diagram of the

response equivalence

relations that are

required for

mediated transfer of

stimulus control

My gifts endure past memory,

Which is my secret, my value.

I am honored in craft, -craft = all building, making

and

construction

Evident in law, -law + the rules we learn to

live by

Praised by arts. -arts = all the

scholarly traditions

**********************************************************

[institutional endorsement of message content not implied]

A. Mulick, PhD

Professor, Department of Pediatrics

Division of Psychology

The Ohio State University

700 Children's Drive

Columbus OH 43205

voice: 614-722-4700

fax: 614-722-4718

[Guest guest]

In a message dated 12/07/1999 10:32:06 AM Eastern Standard Time,

jmulick@... writes:

> Hey all, by way of introduction, let me share with you a riddle, and

> ancient Anglo-Saxon teaching tool that was used with children in pre-and

> semi-literate days.

Dr. Mulick, So glad to see you here!!!!!!!!!!

[Guest guest]

,

PANDAS is just one piece of . My son who is in the AS/OCD symptom

category, would develop really severe OCD symptoms......2nd, 3rd, and 4th

grade was a nightmare. Fourth grade was the worse. Last year (5th) he was

on the protocol. By adding antibiotics when needed, we were able to

keep him from going into full blown symptoms, for the first time. It was

only by treating all the types of infections he can't suppress, that we were

able to avoid a relapse.

Cheryl

> Welcome ,

>

> Same namesake, different spelling--do they always get yours wrong too?

>

> Our son is 9 and is diagnosed high-functioning autistic. He exhibits OCD

quite a bit; as you said, labels. Thanks for sharing your love of your

child, that goes a long way when you send it out. Everyone falls in love

with Austin, and bless his heart for that sharing of himself.

>

> I had been meaning to email this group about medical intervention when

triggers to severe OCD/Tourettes take hold, like a virus. Our son's OCD is

manageable, except when an illness crosses the BBB (I assume), causing

severe shortcircuiting. An example would be his taking more than a few

minutes to get from standing in front of his bed at bedtime to being able to

get into bed and lay down. I'm not talking about the usual takes " forever "

to get the kids to bed. Austin, when ill with viral repercussions, will

touch his hand back and forth towards the bed, then maybe onto the pillow,

then do a curly-que dance because he didn't do it right, etc, etc for quite

some time. Just the usual OCD nightmare. Patience, patience.

>

> Anyway, after last Winter's episode which lasted for a couple of months

after a " cold, " I thought perhaps this year I should request antibiotics or

antivirals from our doctor when his Winter colds come on??? I really have

not wanted to think about the prospect of this happening again this year, as

it inevitably does. I really don't want to join another list, like PANDAS,

though if I don't get some tips here I suppose I will have to.

>

> Help!

[Guest guest]

Hi ,

I have an 11yo son who sounds similar to your son. He was diagnosed as ADHD

at 5. It was only this past year that I realized he had fit the AS

diagnosis. I understand the drawing part for sure. My son pretty much

refused to color or draw as a preschooler. The few attempts at drawing in

Kindergarten were more like scribbles, not even close to what his peers were

capable of. The swinging was another problem.....I think he was at least 6

or 7 before he started to coordinate the movements enough to keep himself

moving. He became a much more complicated child by the time he was 7. At

this point he developed severe OCD symptoms.......classic handwashing, fear

of germs, more sensory problems, etc. Life has definitely been an ongoing

challenge. He is doing so much better medically, now my biggest problem is

our school.

Anyhow, welcome to the group

Cheryl

>

> My name is and I'm new to this list. I'm a " special " reading

> teacher and I live in VA with my husband, daughter (2), and son.

> My son is 6 years old and will be in first grade. He is diagnosed with

> Aspergers, ADHD, and OCD. Actually, I think the OCD symptoms are

> actually more AS related, but the labels really don't matter. He's a

> very bright child and has had a wonderful school experience. His

> teacher has been amazing and he will have her again for first grade...so

> we've truly been blessed in that

> department.

>

> I joined this list because I needed some support from moms that

> understand where we are in our lives right now. Who understand how

> exciting it is when he drew his first recognizable picture this year and

> when he was finally able to get the swing going. Who understand how it

> is to love someone with all your heart, but feel equally frustrated with

> them at the same time. I also want to draw from the experiences of

> those of you that have lived with this for a longer time than me.

>

> I look forward to getting to know you all!

>

>

>

>

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

>

>

[Guest guest]

Kathy, as far as I'm aware, the list is a way for us parents to communicate

and get support. Not necessarily limited to ones on treatment. There are

alot of other problems that all of us deal with and need support for. I

think there are things that we can learn from each other whether following

or not. Said with affection, not anger.

Cheryl

>

>

> JOSKAT95@... wrote:

> >

> > This list is actually for parents whose children are getting medical

> > treatment under the protocol.

>

> Sorry, didn't mean to jump in in the wrong place. In reading your intro

> on egroups I must have misunderstood. Good luck to all of you.

>

>

>

>

[Guest guest]

Dear

Welcome too the group!

mercy

[Guest guest]

Welcome ,

Same namesake, different spelling--do they always get yours wrong too?

Our son is 9 and is diagnosed high-functioning autistic. He exhibits OCD quite

a bit; as you said, labels. Thanks for sharing your love of your child, that

goes a long way when you send it out. Everyone falls in love with Austin, and

bless his heart for that sharing of himself.

I had been meaning to email this group about medical intervention when triggers

to severe OCD/Tourettes take hold, like a virus. Our son's OCD is manageable,

except when an illness crosses the BBB (I assume), causing severe

shortcircuiting. An example would be his taking more than a few minutes to get

from standing in front of his bed at bedtime to being able to get into bed and

lay down. I'm not talking about the usual takes " forever " to get the kids to

bed. Austin, when ill with viral repercussions, will touch his hand back and

forth towards the bed, then maybe onto the pillow, then do a curly-que dance

because he didn't do it right, etc, etc for quite some time. Just the usual OCD

nightmare. Patience, patience.

Anyway, after last Winter's episode which lasted for a couple of months after a

" cold, " I thought perhaps this year I should request antibiotics or antivirals

from our doctor when his Winter colds come on??? I really have not wanted to

think about the prospect of this happening again this year, as it inevitably

does. I really don't want to join another list, like PANDAS, though if I don't

get some tips here I suppose I will have to.

Help!

Intro

Hello,

My name is and I'm new to this list. I'm a " special " reading

teacher and I live in VA with my husband, daughter (2), and son.

My son is 6 years old and will be in first grade. He is diagnosed with

Aspergers, ADHD, and OCD. Actually, I think the OCD symptoms are

actually more AS related, but the labels really don't matter. He's a

very bright child and has had a wonderful school experience. His

teacher has been amazing and he will have her again for first grade...so

we've truly been blessed in that

department.

I joined this list because I needed some support from moms that

understand where we are in our lives right now. Who understand how

exciting it is when he drew his first recognizable picture this year and

when he was finally able to get the swing going. Who understand how it

is to love someone with all your heart, but feel equally frustrated with

them at the same time. I also want to draw from the experiences of

those of you that have lived with this for a longer time than me.

I look forward to getting to know you all!

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

wrote:

>

> Welcome ,

Thanks!

>

> Same namesake, different spelling--do they always get yours wrong too?

Always!! I can't ever say with a C fast enough to keep them

from writing a K!

>

Everyone falls in love with Austin, and bless his heart for that sharing

of himself.

Actually I think that's going to be Jerry's saving grace. He's a nice

kid who honestly tries very hard. It makes it so that people that are

around him in structured settings (school, church, etc) want to try hard

for him too. We are truly blessed.

manageable, except when an illness crosses the BBB (I assume),

Ok, I'm new at this - BBB??

>

inevitably does. I really don't want to join another list, like PANDAS,

though if I don't get some tips here I suppose I will have to.

What is PANDAS? Are questions not often answered here? Sorry I can't

help with an answer other than to say that as a diabetic, I know that my

entire system flips out when I've got a cold or flu...I imagine it's the

same for our little ones. Anything bothering an already poorly

functioning system is bound to make things hard! Seems like

prophylactic antibiotics are a logical thing to talk with your dr about!

[Guest guest]

Antibiotics will not do you any good if the cold is viral. Is he on the

protocol? Dr. G puts them on antiviral and believe me it makes a

huge difference. Have you read the virus within?

mercy

[Guest guest]

Sorry I am writing in a hurry.

HHV6, a virus, is very common among children in this spectrum. We are

carriers but when we have a good immunity system it keeps it all in

check. Our children do not have a good immune system and HHV6 is very

active. Talk to your doctor about antivirals. Antibiotics will create a

huge candida problem and should not be used unless absolutely necessary.

To give an example. My son had salmonella this Summer. The local doctor

wanted to put him on severe dosage of ampicillin. Dr. G said no and

guess what he was right. My son got better in 5 days just by treating

the fever and giving him plenty of water to drink.

Make sure that it is bacteria you are dealing with and not virus.

Good luck

Mercy

[Guest guest]

BBB stands for Blood-Brain Barrier. As just a parent, I am not qualified to

address it technically, but I believe in normal people almost nothing harmful

can cross the barrier of the blood vessel walls into the brain. It's a

safeguard designed into the nature of the brain. But in some differently-abled

people, some harmful elements can cross the barrier, causing temporary or

permanent damage. I'm sure someone who is well-versed in the true mechanism of

how this works will come forward to explain, if this is not clear.

This list, to me, seems very supportive, and has especially knowledgeable

listmates who answer questions more appropriately than I probably have here.

I can't remember what PANDAS stands for, but I believe it is a group of parents

whose children display Tourettes/OCD symptoms specifically. When I mentioned

their list, I was fishing here to find out if anyone thinks I probably SHOULD

field the question to them instead of here.

I just checked my email this morning, wanted to welcome you, and held my breath

asking the question I don't really want to think about and have been putting off

asking for quite some time. It is such a trauma when a normally mild illness

like cold or flu can take months of my child's life away.

We continue to be so thankful for Austin's dear qualities.

Re: Intro

wrote:

>

> Welcome ,

Thanks!

>

> Same namesake, different spelling--do they always get yours wrong too?

Always!! I can't ever say with a C fast enough to keep them

from writing a K!

>

Everyone falls in love with Austin, and bless his heart for that sharing

of himself.

Actually I think that's going to be Jerry's saving grace. He's a nice

kid who honestly tries very hard. It makes it so that people that are

around him in structured settings (school, church, etc) want to try hard

for him too. We are truly blessed.

manageable, except when an illness crosses the BBB (I assume),

Ok, I'm new at this - BBB??

>

inevitably does. I really don't want to join another list, like PANDAS,

though if I don't get some tips here I suppose I will have to.

What is PANDAS? Are questions not often answered here? Sorry I can't

help with an answer other than to say that as a diabetic, I know that my

entire system flips out when I've got a cold or flu...I imagine it's the

same for our little ones. Anything bothering an already poorly

functioning system is bound to make things hard! Seems like

prophylactic antibiotics are a logical thing to talk with your dr about!

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

,

Thank you so much for responding. That was my hunch, that antibiotics would not

address what is going on. Is The Virus Within a book I can mention by name and

order at my local bookstore, or can you tell me the author?

Austin is a healthy, energetic, engaged child most of the time. He has autism

as a result of congenital ACC, agenesis of the corpus collosam, which means he

lacks the piece that communicates from one side of the brain to the other.

I have strong conviction about the correctness of the protocol, but do not

feel Austin's overall condition warrants what I perceive as designed for the

more medically ill child. I do believe antivirals might help as a preventative

measure when a serious cold/flu takes hold. I'd like to hope that I could make

an educated request to Austin's family doctor for that medication this year.

Would acyclovir be a good first choice, or do we have to start with Famvir?

Would The Virus Within address antiviral choices?

Thank you all so much for your support and patience,

Re: Intro

Antibiotics will not do you any good if the cold is viral. Is he on the

protocol? Dr. G puts them on antiviral and believe me it makes a

huge difference. Have you read the virus within?

mercy

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

, welcome aboard! How did you know that your son had a congenital ACC?

Who tested for that?

[Guest guest]

This list is actually for parents whose children are getting medical

treatment under the protocol. You can read about it on neuroimmunedr.com

Kathy R

[Guest guest]

The blood brain barrier works the same in all people as far as we have

determined. The issue with these children is their immune system. This can be

proven by medical tests. KathyR

[Guest guest]

You cannot do the protocol in a piecemeal fashion and expect it to work. The

protocol cannot be initiated without a work up to determine if that

is really what your child has. This requires going to a practitioner.

Kathy R

[Guest guest]

JOSKAT95@... wrote:

>

> This list is actually for parents whose children are getting medical

> treatment under the protocol.

Sorry, didn't mean to jump in in the wrong place. In reading your intro

on egroups I must have misunderstood. Good luck to all of you.

[Guest guest]

Besides Goldberg, who else is a practitioner? How does one find out?

[Guest guest]

This does not mean that everyone is not included. Anyone can join the list

but you may not understand what we are talking about if you do not read the

website! Kathy R

[Guest guest]

Absolutely but we are finding that there are people on the List who are not

aware that the list is part of something bigger. I would hate to think that

there are people reading and participating on this list that do not have

their children on the protocol but could. Having seen the scalloping on the

neurospects I guess that I think time is a real factor here! The next time

you go to that parking lot take a baseball bat! Kathy R

[Guest guest]

There is going to be a clinic opening up soon in the Southwest. There will be

one opening up soon in Northern New York soon! Cheryl can tell you about

California! Kathy R

[Guest guest]

Thank you Sandy for answering my question.

Kathy R. please keep us posted on when the clinics will be opening that is

wonderful news.

Rosemarie

[Guest guest]

Dear Listmemmbers,

This list is for ANYONE doing the protocol or INTERESTED in

learning more about the immune dysfunction connection to their

child's autism, PDD, CFIDS, etc. It is both a place for those of us

already doing the protocol to share information, as well as a place

for those interested in learning more by asking questions, or just

lurking.

The approach does not hold vaccines explicitely responsible for

our children's immune problems, however, a child with a dysfunctional

immune system may possibly be more prone having their problems

exacerbated by vaccination.

While other conversations will and do take place here, our primary

focus is .

Thank you,

Sandy

ListOwner