Nids

Hi All.
I need some suggestions for a good multi-vitamin for my 3 year old. Which ones
have your kids tolerated well and which ones should be avoided?
Thanks.

Robert:
The erroneous e-mail has been deleted from the
archived NIDS messages, so it just may miss going into
the digest. For all listmembers who do get the message
that Robert referred to in his most-recent post:
Please delete it. It bears the subject heading: "Does
this mean PAX no longer"-- no need to open and/or read
it --- DELETE it!
C McLaughlin
Calif NIDS Coalition

Dear list.
The attached message was not sent by me, nor was it sent to me - please
delete
- how it got to the NIDS list is a complete mystery.
I am running a virus scan update now.

Has anyone had any experience with seasonal affective disorder? Supposedly the
lessening in daylight hours has an effect on serotonin levels etc. Some people
do some kind of light therapy all though the winter months.
I am asking because this time every year, after an initial good start back to
school my son takes a dive. He clearly is perseverating more and teachers have
said that he has really increased nervous stims over the past few weeks.
Of course we think of allergies and the other usual suspects but I am just
interested to learn more about this light thing. Thanks, Lisa

Hi,
I'm new to the group and just saw reference to the NIDS protocal. Is
there an actual written protocal that offers guidance as to where to
begin to uncover issues in our kids?
My son recently tested positive to Myelin Basic Protein Antibody.
Any suggestions for further testing and where to go for help?
I live about 30 miles NE of Philadelphia.
Thanks.
Joanne

Hi, All.
I have been 'lurking' for a couple months now, and have a couple questions:
I live on the east coast, and the likelihood of getting my 10yr old autistic
son to Dr. Goldberg's office is fairly slim.
Does Dr. Goldberg either:
A. Publish a protocol my physician (or a skilled immunologist) can use?
or,
B. Have a physician in the greater Washington DC area to whom we may be
referred?
Thanks for your time.
Rob in Maryland

Hi there. Does anyone know of any current autism rates? We had a posting
not too long ago about the autism rates for 1999 by state. Just trying to
keep updated. Thank you.
jill

We started Jacob on the NIDS protocol 2 yrs ago, when he was 4.5 yrs old.
We were also doing ABA (40 hrs a week) and GFCF minus anything else
he was showing intolerances for.
Tried the supplement route, with limited success.
Really didn't want to do secretin - based on the research I read it didn't
seem the 'right' treatment for Jacob.
We weren't, and aren't, overly happy about giving Jacob so many meds
(valtrex, diflucan, celexa and now kutapressin).
The results have variety - some came quickly while others slowly
crept up.
2 important markers I have used have been the mthly blood test results and the
NEUROspect we had done. Jacob's inital blood tests were showing
a very sick little boy. His blood tests nows look much better and the spect
gave us renewed hope that we are on the right tract.
We will talk with Dr G about why use valtrex and kutapressin together -
can we delete the valtrex? valtrex is a antiviral for herpes.
Kutapressin chops up herpes viruses and regulates the immune system.
It doesn't hurt to ask.
And yes, we're continuing with ABA til August. We always reassure Dr G
that Jacob is being treated with respect and as a neurotypical 6 yr old.
It's the current school system that we're having issues with ...
and we may have found a local allergist to help us with "Maryland allergy
issues"....... more to come ....
doris
Maryland

Hi!!
Yes, things are on the upswing. We were on the Famvir for about 3 months and
Colin actually slipped. We put him back on the Valtrex and he is almost back
to where he was early in the summer with some verbalization imitations and
awareness, and potty training have improved. It is amazing what the right
drug can do!! Hope all is well with you Michelle out East!! Take care!
Kathy B

The NIDS Research Institute and Parents Coalition announces the following
event:
Saturday December 1, 2000 10AM PST/1PM EST to 2PM PST/5PM EST.
Autism Spectrum Disorders, ADD/ADHD and Chronic Fatigue:
The Medical Epidemic and the Neuro-Immune Connection
A Video Tele-Conference presentation: Universal City in Los Angeles, CA --
Burlington in Boston , MA
Presented by the NIDS Research Institute and Parents Coalition:
Dr. Michael Goldberg, M.D. FAAP. Director, NIDS Medical and Scientific
Advisory Board
Presentation followed by a Questions and Answer period.
For Boston Attendance contact Ryan at nids.lecture@...
In Los Angeles contact me directly at marc@... or call 818-951-8579
This event can bridged to any other location. If you are interested setting
up a location to participate in the exciting event, please contact me
immediately at 818-951-8579.
Marc Share
President and Executive Director, NIDS-RI and Parents Coalition

Subj: Is the Common Cold, Herpes the Source of Autism?
Date: 11/6/01 1:30:23 AM Pacific Standard Time
From: featnews@... (FEAT News)
Sender: FEATNEWS@... (FEAT Daily Newsletter - Families for Early
Autism Treatment)
Reply-to: <A HREF="mailto:michigan@..."
To: FEATNEWS@...
FEAT DAILY NEWSLETTER Sacramento, California http://www.feat.org
"Healing Autism: No Finer a Cause on the Planet"

Tina M. Hendrix
CureNIDS2000@...
Vice-President, California NIDS Coalition
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

Kathy,
I live in south lake county in Illinois. I found out my son's diagnosis this
January. Take me a while to know what to do about his issues. Now I have OT
and floor time therapist to work with him. This Saturday, I was told, a child
can learn social skill by himself before he reaches 9 year's age. There is
about 1 1/2 year left that floor time can be helpful.
I am still not comfortable with the idea of giving him medications. I just do
not know what is best way to help him.
Alex is a very nice and smart boy. His sensory issues make him acting strange
and tune out people a lot. He also has trouble find a proper way to interact
in a group. It is hard to see him in school. I just hope somehow he can grow
out of it with help.
Jin

The "Hot Immune system" article caught my eye too -
The headline suggests that the findings are about a dysfunctional immune
system - it being described as "HOT" - a term that Dr Goldberg has often
used with us in describing immune systems of NIDS kids - the body of this
extract is beyond me, but at a guess it looks like it actually supports the
NIDS theory - in this case the headline is contra-dictory and misleading.
But I might be wrong,
Robert

Applied Behavioral Analysis is a very general term that encompasses a very
wide field. One piece of ABA, which is a giant field, is the educational
piece. Think of ABA as a pizza pie and Education as a slice. The
education slice of ABA has a few methods, most of these methods were
created to educate people and yes maybe non-humans as well, but there was
no specification that the person or people had to have any behavioral or
cognitive impairments.
Many of these methodologies are still popular today such as Direct
Instruction, Precision Teaching, and yes the hated by some people Discrete
Trial Teaching or DTT (this is the thing Lovaas the behaviorist developed
for teaching DD kids).
It is true that the delivery of any ABA methodology does require people to
be very well trained and the programs should be monitored and adjusted on a
minute by minute basis if need be. ABA delivered well is a very expensive
proposition, however, to not have a good ABA program is a very unethical
proposition when it comes to teaching vulnerable people such as children
and especially DD children. In the wrong and incompetent hands, Behavioral
methods can do more harm than good, so as parents you need to be aware of
the qualifications of the people who are delivering any ABA programs to
your child, be it the public school or some private consulting firm. Go to
the website www.behavior.org and you will find a consumer guideline for
selecting an ABA program.
Are your ABA consultants BCBAs? (Board Certified Behavior Analysts, they
have to sit for a test from the Association of Behavior Analysts for this
one. You have to be qualified to take the exam, which means lots of
experience in the different facets of ABA not just the Lovaas Discrete
Trial piece)
I hope this helps with the confusion.
Rose

Enclosed are a few items refd in the FEAT newsletter.
I can't seem to download the entire file from PubMed..
Any comments? I'm having a hard time understanding
the last article (HOT immune system).
I tried to log into the NIDS chat last night - server problem?
Question: has anyone brought up Immunotherapy with Dr G ?
Does he have an opinion about it?
Antipsychotics for Neuro-Immune Dysfunction/Autism?
A behavioural pattern analysis of hypoglutamatergic mice - effects of
four
different antipsychotic agents.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_ui
ds=11692287&dopt=Abstract
Nilsson M, Waters S, Waters N, Carlsson A, Carlsson ML.
Department of Pharmacology, Institute of Physiology and Pharmacology,
Goteborg University.
In a hypoglutamatergic rodent model, we have observed certain
behaviours that might have relevance for the cognitive impairments seen
in
autism and schizophrenia. Thus, hypoglutamatergic mice show defective
habituation, impaired attention, a meagre behavioural repertoire and a
general behavioural primitivization.
The aim of the present study was to characterise and quantify
changes
in movement pattern in mice rendered hypoglutamatergic by means of
MK-801
treatment, using an automated video tracking system. Further, the
effects of
four different antipsychotic drugs, the classical neuroleptic
haloperidol,
the atypical antipsychotic clozapine, the DA D2/5-HT2A antagonist
risperidone and the selective 5-HT2A-receptor antagonist M100907, were
compared with respect to effects on NMDA antagonist-induced movement
pattern
alterations.
We found that each receptor antagonist had a unique effect on the
MK-801-induced behavioural primitivization. Haloperidol was unable to
affect
the monotonous behaviour induced by MK-801, while risperidone, clozapine
and
M100907 produced movement patterns of high intricacy.
PMID: 11692287 [PubMed - as supplied by publisher]
................................................................................\
..........
Autistic Kids Have Hot Immune Systems
Study strikes another blow for autism-as-an-immune disorder (NIDS)
hypothesis
Proinflammatory and regulatory cytokine production associated with
innate
and adaptive immune responses in children with autism spectrum disorders
and
developmental regression.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_ui
ds=11694332&dopt=Abstract <-- address ends here.
1: J Neuroimmunol 2001 Jan 11;120(1-2):170-9
Jyonouchi H, Sun S, Le H.
Department of Pediatrics, University of Minnesota, MMC 610 FUMC, 420
Delaware Street SE, 55455, Minneapolis, MN, USA
We determined innate and adaptive immune responses in children
with
developmental regression and autism spectrum disorders (ASD, N=71),
developmentally normal siblings (N=23), and controls (N=17). With
lipopolysaccharide (LPS), a stimulant for innate immunity, peripheral
blood
mononuclear cells (PBMCs) from 59/71 (83.1%) ASD patients produced
above the control mean (CM) values of TNF-alpha, IL-1beta, and/or IL-6
produced by control PBMCs.
ASD PBMCs produced higher levels of
proinflammatory/counter-regulatory
cytokines without stimuli than controls. With stimulants of
phytohemagglutinin (PHA), tetanus, IL-12p70, and IL-18, PBMCs from 47.9%
to
60% of ASD patients produced
depending on stimulants. Our results indicate excessive innate immune
responses in a number of ASD children that may be most evident in
TNF-alpha
production.
PMID: 11694332 [PubMed - in process]

Jin -
Your son sounds similar to mine. I found that the sensory issues
decreased after we put him on a gfcf diet, but they always increased when
his stress level increased (like when school started last year). After
working with Dr. Goldberg for almost a year my son's sensory needs
continue to decrease. The only time they get really bad is when he's on
a medication that isn't right for him. We're so used to giving him a
daily sensory diet and having things around for him to do that I'm not
really sure how he would do without them at this time. He still has
sensory issues but we've stopped private OT and only do a gymnastics
class 1x per week. The SI Dysfunction no longer rules our lives and it's
a little more peaceful in our house. It seems the healthier they get the
better some of their issues get as well.
As for the social aspect, that too is improving with Dr. G. Many of his
peers seek to play with him and most times he is interested in playing
with them. I no longer hover over him during play dates. The school has
been helpful with this - pairing him with kids that are more
understanding of his social quirks.
I agree that more therapy helps the day to day living. However, I found
that it doesn't treat the underlying condition. Therefore, without the
medication to treat him my son would probably be in several therapies a
week still. Email me privately if you have any other questions.
Michelle
pappadia@...
On Mon, 05 Nov 2001 13:16:48 EST yanglou@... writes:

Hi,
My Son Alex is 7 1/2 year old with Asperger. He is high functioning with mass
sensory issues and social skill problem. He is currently working with Dr.
Greenspan's method once a week and working with SI OT and GYM , and swimming
once a week. I am going to double his play therapy and SI OT very soon. I may
also add in speech therapy.
Does any one have a suggestion on what else I can do to help him? Does anyone
has a child in similar situation and recovered?
Thanks
Jin

Hello everyone. We have just started kutapressin. I'm wondering if
anyone would mind sharing the positives/negatives their child
experienced on this med? Dr. G. always tells me to look for a
brighter, more alert child. This is where I get perplexed. My child
already is bright and alert(after 3 years of ABA and gfcf)- but her
bloodwork shows that there are still problems. How do you know
when "all the light bulbs are on?"

I always wonder about dark eye circles:
is it both lack of sleep & detoxifying ability?
With sleep one needs to do less daydreaming perhaps
Does hyperactivity & exotoxins figure in this?
Just day-dreaming
Neil :-)

I agree with Warren completely, when done CORRECTLY, ABA is an
invaluable asset. My own personal opinion is either doing just the
NIDS protocol or just ABA is like treating half the child. I feel
that ABA alone is BEHAVIOR MODIFICATION, when it is combined with the
NIDS protocol it then becomes REHABILITATION and helps children catch
up on all those milestones that they have missed and need.
Susan

criticizes is
www.CenterForAutism.com. They
son.

Doris:
How long has it taken for your son to lose his dark circles under eyes?
Courtney

If I'm not mistaken, I believe Dr Goldberg to be quite critical of ABA.
Chris

Susan,
I would assume that it is fructose. I would use it as judiciously as I do
sucrose. Kathy NIDS-NNY

Lisa,
Please e-mail me privately. if possible, i'd like to talk on the phone about
these issues. there are some things that can be done, but easier to figure
out each individual situation with a phone converation. My ph number is
(707)538-2193 if you'd like to call.
Tina M. Hendrix
CureNIDS2000@...
Vice-President, California NIDS Coalition
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

I found a good sugarfree cookbook, but some of the recipes call for
date sugar. It's made from dehydrated ground up dates. Would this be
considered SUGAR and something to avoid?

Hi all,
I haven't posted in a long time, but wanted to share our Halloween tradition.
It may be helpful for many of you that don't want to exasperate your child's
allergies, "yeast" issues, or NIDS from eating Halloween candy.
After my son had started on a special diet, my Mother-in-law sent me a
newspaper clipping about a mother whose child had diabetes and could not eat
candy. This mother had been watching the Charlie Brown Halloween cartoon and
decided to adopt the idea of the Great Big Pumpkin. She told her son that if
he collected a lot of candy and left in on the table, the Great Big Pumpkin
would come at night and eat all the candy. In it's place, the Great Pumpkin
would leave a present. The more candy the child collected, the "bigger" the
gift from the Great Pumpkin.
I tell my boys that their friends don't get presents because they eat their
candy and don't save it for the Great Pumpkin. They have a lot of fun
trick-or-treating and are not disappointed that they can't eat any of it.
Happy Halloween everyone : ),
Aimee

been sick for a long time. And it takes a long time for them to get
better. Unfortunately, on this medicine they get worse before they get
better. My son Ryan is 13 and now recovered. When my guy was little
he used to bite, squeeze, pinch and hurt us. Ryan used to make noises,
grind his teeth, bite and squeeze the dog and his sister. At times he
acted almost drunk by being silly and laughing inappropriately. He
was hyper sometimes and had no energy at other times. Eliminating
milk had helped a little but no matter how many times we tried to stop
these behaviors, Reed seemed incapable of fully controlling them.
the "drunken behavior", noises, biting and pinching decreased. But he
actually got worse before it gradually decreased over time. Using the
medication and ABA, Ryan was able to learn that these behaviors
were unacceptable and would not be tolerated. You have to remember
he has been doing these behaviors for a long time. They will not
disappear even if you could wave a magic wand and make his body
normal. Before Dr. G the ABA was not successful to eliminate the
squeezing and biting. And I don't think Dr. G without ABA would have
been as successful. For us, one would have not worked without the
other.
might affect liver function. At first I was concerned about this. Then I
realized my child has a very serious disease and if he has any chance
of beating it, I'm going to have to try some medications that might be a
risk. Ryan is still on the anti-fungals and continues to take regular
blood tests to monitor his liver function before any damage might
occur. Fortunately, for the lat ten years all his tests have been
normal. And he has been on some form of this medication since he
was three.
simple body maturation might explain such improvement. However,
when Ryan had to take antibiotics for an illness when he was younger
and less healthy, his behavior once again became extremely autistic.
We saw behaviors that had been eliminated for at least eight months.
The noises, teeth grinding, unresponsiveness and squeezing were
back. Four days after the antibiotics were finished, the anti-fungal
medication must have kicked in. Ryan's behavior returned to its
previous level.
a simple fix. It is very complicated and sometimes you have to take
five steps back in order to move forward.
He has never taken these medicines (until now, I never knew they
existed). Truthfully he's in bad shape. We have an appt. set to begin
testing and treatment, if the 13 year old is better - it is a result of the
treatment and meds. he is receiving. These children do not grow out of
this. The negative affects only get worse as they get older, also don't
ever let anyone take your child's therapy away. The meds. and
therapy are your childs only chance for reccvery. (S.T.,P.T., O.T. and
I've heard there are others available now) Get as much therapy and
help for your child as you can. Stick w/it, don't look back, look only to
the present day and future of your child. Trust this Doctor G. and be
thankful he is here to help you and your child. Remember this could
be our childrens only hope for recovery. Josh is 15 but he will begin
treatment even though I know it may be too late for a chance of
rehabilitation. Therapy, medication and Hope is all we have to save
him from being institutionalized, when we are no longer here to
provide for his needs.

Has anyone who trained him at school visited you in the home while he was
there? That may help. Do you use pull-ups? If you do but the school
doesn't that confuses him. Stop all liquids after dinner. Actually, don't
use diapers in the home setting at all. Never ask him if he needs to use the
toilet. Just put him on it once every 30 minutes while you monitor the
liquid consumption, too.
All I ever told my sons in toilet training was, "That is correct." Nothing
more.

Sounds like our son a while back who is 5.5 yrs now. I agree that it
is a major control issue. We would know that he needed to go potty
and explain thru his "no" that he needed to go and physically put him
on it. And lo and behold he went to the bathroom even though he said
no. We just pushed through it and "assisted" him and in time the no's
to potty and everything else went away.
It's amazing how his lights were turned off for 2+ years and to see
him go back to repeat stages that were missed. This definetly was a
control issue that I also believe stemmed not only from a skipped
stage but that he always has to perform at school and probably doesn't
get to use the no word there because they won't let him get away with
it.
I would continue to politely assist him
Goodluck,
Mike

Does anyone have any suggestions for toilet training? My NIDS child
has been trained at school for a year (he is 4 1/2)but will do
nothing at home. I have tried everything! He has no interest in
positive rewards and could care less about the negative
consequencees. He is going through a major "no" phase he found the
word afew months ago and says no to everything (like a two year old)
especially going on the potty! I think this is major control issue
for him. My question is do I wait it out? any suggestions would be
helpful. Melanie

I only received two of the seven messages listed in this digest. Thanks for
helping with the problem

Debbie,
Don't stop the medicine before talking with Dr. G. Your child has been sick for
a long time. And it takes a long time for them to get better. Unfortunately,
on this medicine they get worse before they get better. My son Ryan is 13 and
now recovered. When my guy was little he used to bite, squeeze, pinch and hurt
us. Ryan used to make noises, grind his teeth, bite and squeeze the dog and his
sister. At times he acted almost drunk by being silly and laughing
inappropriately. He was hyper sometimes and had no energy at other times.
Eliminating milk had helped a little but no matter how many times we tried to
stop these behaviors, Reed seemed incapable of fully controlling them.
After the anti-fungal medication, Nizoral, the frequency of the "drunken
behavior", noises, biting and pinching decreased. But he actually got worse
before it gradually decreased over time. Using the medication and ABA, Ryan was
able to learn that these behaviors were unacceptable and would not be tolerated.
You have to remember he has been doing these behaviors for a long time. They
will not disappear even if you could wave a magic wand and make his body normal.
Before Dr. G the ABA was not successful to eliminate the squeezing and biting.
And I don't think Dr. G without ABA would have been as successful. For us, one
would have not worked without the other.
One concern I had was that sustained use of anti-fungal medication might affect
liver function. At first I was concerned about this. Then I realized my child
has a very serious disease and if he has any chance of beating it, I'm going to
have to try some medications that might be a risk. Ryan is still on the
anti-fungals and continues to take regular blood tests to monitor his liver
function before any damage might occur. Fortunately, for the lat ten years all
his tests have been normal. And he has been on some form of this medication
since he was three.
At first, I questioned the effectiveness of the medication and thought simple
body maturation might explain such improvement. However, when Ryan had to take
antibiotics for an illness when he was younger and less healthy, his behavior
once again became extremely autistic. We saw behaviors that had been eliminated
for at least eight months. The noises, teeth grinding, unresponsiveness and
squeezing were back. Four days after the antibiotics were finished, the
anti-fungal medication must have kicked in. Ryan's behavior returned to its
previous level.
We no longer have that issue. But this is not cured overnight. It is not a
simple fix. It is very complicated and sometimes you have to take five steps
back in order to move forward.
Good Luck and contact me if I can help.
Marcia

I know this isn't the magic bullet answer (I am still looking for that
too) but it's time as you progress further through all your therapies.
Be glad he doesn't bite the way our son did which was horrible because
you didn't know if he was going to kiss you or bite you.
For us at 15-18 months the lights went out (MMR/DPT) major
sensitivities progressively increased (sight, hearing, taste, texture)
with loss of words, major gut dysbiosis and attentiveness. By 3.5 he
could socialize and interact with peer groups. I won't get long
winded but the ped took us down this path and allayed all our fears on
each of the above pushing our timeline out when we could have been
starting at around the age of two.
At age 3.5 we started diving into all these therapies (OT, PT, AIT,
Vision Therapy...etc). Most were not apparent in helping initially
but after 6-12 months changes started to take place and the biting
subsided replaced by pinching. To us it was an outlet of his
inability to communicate or his way of getting our attention...he
never did do it relatives and just saved it for mom and dad.
The only thing I can pass to you is not to give up and fight thru it
telling him continually that it is not acceptable and it hurts us.
Our son would realize this after he bit us and say I'm sorry and kiss
us. Eventually(about a year), he got to the point of better
controlling the tidal waves of emotion as he became more vocal but
it's a long road we're all on for the betterment of our little ones.
Good luck,
Mike

Debbie,
I was just at a parent training for a program that my son is going to begin and
they said (using PECS) have a piece of cardboard with 3 smiley faces with the
word "happy" on each, velcroed on, going across (left to right). Each time he
pinches, you say "no pinching" and take one of the smile faces off. He's
getting 3 chances. If all 3 smiles come off, there's an arrow leading to
whatever the consequence will be (taking away a favorite priviledge, no video,
etc.). Eventually he will catch on. You have to be consistent though and say
nothing else but "no pinching" when you remove the smile. Hope this will help
you. KathyP

Based on the last message in this group, our computer may have been used by
a virus to try to disseminate itself. The lack of an attachment to the

Setup will automatically install the language that corresponds to your current
language settings (or English if that language is unavailable).
Have Fun!
Dive into this diverse collection of addictive puzzle games. Enjoy Microsoft
Entertainment Pack: The Puzzle Collection.

Re nizoral: My understanding is that you should NOT discontinue any
medication until instructed to do so unless you are seeing the adverse side
affects that you were previously warned about. There may be positives that
you do not recognize yourself until you are questioned about your child's
functioning.
Re: pinching
We successfully ended this behavior by pairing "no pinching" by holding my
child's hands down close to his side so as to prevent the pinching. Since he
hated to be restrained, this worked as an aversive, so he began to stop
pinching to avoid the restraining. It took a while for him to see that we
were not going to let him get away with the pinching. First you usually see
an acceleration of pinching (the "test"), then quick decrease in pinching.
The key is to not give up during the increase in pinching, thinking your
intervention isn't working. Hope this helps
Kate

Hello:
Has anyone out there every had a problem with pinching? My son has
been doing this for quite a few months now (since Feb, I think) and
it is quite annoying and frustrating. My arms have scars on them
from constant pinching, etc. He does it for a variety of reasons (to
gain your attention, out of frustration and to avoid a task). Any
ideas on how to get him to stop? Help!!! My poor mother-in-law has
been babysitting for us two days a week and her arms are getting
bruised up!
P.S. My son is non-verbal and we are working on a PEC system to help
him communicate, so I'm sure this has something to do with his
frustration....
Thanks again!
Debbie

A Project to Map Autism Research
An all-encompassing and comprehensive review exercise to map the
current state of knowledge in autism research is being conducted. This
unique project is a precursor to the establishment of a UK-based Foundation
for Autism Research.
The project, spearheaded by the Institute of Child Health, is a
collaboration between academic and voluntary organisations; namely PACE
(Parentsâ Campaign for Education) and the UK National Autistic Society
(NAS). The project is being overseen by an expert panel including Sir
Michael Rutter, Simon Baron-Cohen and Paul Shattock.
In order to develop and refine the proposal for an Autism Research
Foundation, a preliminary mapping exercise into autism research is necessary
to:
⢠Identify from a global perspective what research into autism is
currently being undertaken
⢠Identify emerging themes, and areas of interface between academic
disciplines
⢠Identify topics of potential value that are under-researched and
locate themes for which funding is particularly hard to obtain at present.
In addition to mapping published scientific work, the project wishes
to gain information regarding current research activity and scientist,
practitioner and parent views about future research priorities. FEAT is
distributing this questionnaire to give you the opportunity to have your say
about the direction of future research. Unlike previous research, the
project aims to raise questions rather than to answer them.
As you may well know, the questions and problems of autism are
pressing. Please respond promptly.
Please complete the attached form and return it (either as a Word
document or in the body of an email) to
FEAT@...
THEN FORWARD THIS ORIGINAL POST TO OTHERS YOU KNOW WHO MIGHT WANT TO
PARTICIPATE BUT WHO ARE NOT REACHED BY THIS LIST.
Your assistance in this matter is greatly appreciated.
Q 1. What do you consider to be the priorities for research in the
next decade and
why do you consider research in this area is needed?
Q 2. If you are currently involved in research activity in autism
spectrum disorder we would like you detail the title and aims of your
current projects.
Tina M. Hendrix
CureNIDS2000@...
Vice-President, California NIDS Coalition
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

Hi again,
I am switching my son from Celexa, which he has been on for four years, to
Effexor. My question is has anyone else tried Effexor, and do we have to wean
him completely off the Celexa before introducing the Effexor at a low dose, or
can we slightly over lap the two?? For example, he was on a whole 20mg Celexa.
I have weaned him down to 1/4 that. He is going berserk!!!! Can I go ahead
with a small dose of Effexor now, or do we have to be totally OFF Celexa for a
week?? I am under a doctors care, and that is what they are recommending. But
our pharmacist said that we could over lap the two. Has anyone had this
experience and can share it with me??
Trina

HOW DO I UNSUBSCRIBE TO THIS LIST. THANK YOU

I've tried several brands of bread, plus several recipes, and my kids like
the bread (and cookies, muffins) from the Really Great Food Co. (neighbor
kids love the cookies too) 1 800 593 5377
To sign off list, go back to where you signed on, and then click "unsubscribe"
Kate

The DHHS's CFS Coordinating Committee's Name Change Working Group has come
up with their draft recommendation and rationale for a name change.
They are also requesting input from the public, in the form of a
questionnaire, by January 7, 2002.
You can find the recommendations draft and the questionnaire at my site,
www.sonic.net/melissk/namechange2001.html. Included at this page is a
downloadable copy of the same document in MSWord .doc and .txt formats so
you can easily print them out and distribute to those who have no internet
access, etc.
Thanks to John Herd for including me on the distribution for this
document...
--
Melissa Kaplan
http://anapsid.org
Tina M. Hendrix
CureNIDS2000@...
Vice-President, California NIDS Coalition
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

Sorry for the inconvenience. Page might be temporarily unavailable for
maintainance or something. I get the same thing even when i click on the
articles link on the home page.(www.neuroimmunedr.com)
try again a little later, and if you still have the problem, let me know and
i'll contact the web master.
Tina
In a message dated 10/23/01 10:27:38 AM Pacific Daylight Time,
n.clark@... writes:
Tina M. Hendrix
CureNIDS2000@...
Vice-President, California NIDS Coalition
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

Has anyone heard of this drug or has any experience with its trial on autism
spectrum children?
The reason I am asking this is because I read some article about cognitive
development of the brain in the
http://cogsci.soton.ac.uk/bbs/Archive/bbs.quartz.html web site. It is
somewhat laborious to get the real relevant info out of the paper, but in
section 3 the author outlines a very important developmental role for the
neurotransmitter "Nitric Oxide" in development of the brain and learning
process.
So, I looked around to see what drug is out there that would promote the
level of Nitric Oxide, and the only one I came across was Deprenyl.
Interestingly enough Deprenyl is also suppoesed to increase the blood flow
in the brain and enhance the body immune system; but right now is mostly
prescribed for the Alzheimer patients.
I found a couple of references of use of this drug with autism and ADHD
kids. http://www.pslgroup.com/dg/13e786.htm also in Cognitive Enhancement
Research Institute web site, there is a sighting of improvements in autism
with Deprenyl. (http://www.ceri.com/back5.htm look under #47)
I was wondering if anyone in the group has any experience with this drug.
Thanks.
Alex & Connie Raji

not able to get;
http://www.neuroimmunedr.com/Articles/articles.html
able to get:
http://www.neuroimmunedr.com/Articles/Autism___PDD/New_Definition/new_defini
tion.html

<A
HREF="http://www.neuroimmunedr.com/Articles/Autism___PDD/New_Definition/new_defi\
nition.html"
Aliza:
This is a really good article to start with.
Hope this helps. As far as medicine
prescribed: anti virals, anti fungals, ssri's...
Dr. Goldberg would suggest which meds
to start with and changes would occur to
get optimal results. Best Of Luck.
Michele Davies

I used to do that
everything looked dark & shadowy
I used the extra light
to turn on
& help concentrate / keep awake
Keep him busy / occupied / encouraged (when necessary)
http://3service.freeservers.com/stress.html
Neil :-)

Linda,
We tried, and threw out, enough breads to feed an army (if they would eat
them). Our son hated them all until we found KINNIKINNICK foods at
KINNIKINNICK.com. They are out of Canada, but they ship quickly to the US. They
have a very tasty line called ALTA Breads which are GF/CF. Kinnikinnick's web
site is all gluten free and items which are gluten and casein free are labelled
with the alta gf/cf logo so safe shopping is easy.
Our son loves the ALTA sandwich bread, bagels, raisin bread, hot dog buns
and pizza crusts. They also carry cookies but they were not popular with him.
Good Luck!
John & Pam Kostic
----original message

Good luck with the Kutapressin. The first month or so is toughest in terms
of giving it (and receiving it!), but it becomes routine - sure we all hate
doing it, but if you think of the benefits to your child then its worth it.
On allergy panels, yes we experienced the same improvement after a year.
On Stimms - if he is not well/allergies up then stimms go up - if he's well,
engaged and involved - like today, then stimms are less, and a happy fun
laugh replaces the "eeeee's".
Robert

I wish you luck. Kutapressin was an absolute nightmare for my son. I
was told by Dr. G. that when he started spinning it was a good thing
and that we were hitting something (he allergy tested negative (twice)
to kutapressin)). After two straight weeks of this, my son spun every
waking hour of the day. We lost all communication and all eye
contact. He was the poster boy for autism on kutapressin. He was in
a typical preschool class pre kutapressin, but we were asked to remove
him from the school while he was on it. I d/c after three weeks.
On kutapressin, his immune status remained as it was-poor. After a
day off of the kutapressin, I saw some improvement. It took many
weeks for him to come back to where he was pre-kutapressin.
(My son did not stim pre kutapressin, and the only time I ever saw him
spin was when he was placed on nystatin. A year later, I learned he
had severe allergies to mold which is where nystatin comes from). I
wish you luck with the kutapressin, but did want to let you know there
are others (many others) who have had similar, negative reactions to
this medication.
Regarding the mold/pollen (I'm up in PA); I've found that zyrtec in
the evening works wonders.
ann

The Andi Wonderbread (available from Miss Robins) has been a favorite
with my kids. We just tried the potato bread mix (it has no rice flour -
also from Miss Robins) and my kids liked that too. I've tried lots of
different recipes (from Special Diets for Special Kids, the Bette Hagman
cookbooks, Unravelling the Mysteries of Autism and PDD, ets) but I think
the mixes are the easiest and come out the most like regular bread in
terms of looks and texture. For me, the recipes tend to be really messy
- the dough always travels up the beaters due to it's consistency and
everything gets dough on it. Of course this could be due to the cook
rather than the recipe...I'd be glad to send you some of the recipes I've
tried if you are interested. The kids have eaten everything I've made
and have no complaints. The combination of the mixes and a breadmachine
are the easiest for me since they don't seem to have an opinion. Also,
it may seem like alot for a loaf of bread (around $4-5 per loaf) but they
get so little bread these days that one loaf lasts two weeks for two
kids. Good luck! Also, most of these breads freeze pretty well so it's
easy to just bake one day every few weeks.
Michelle
On Sun, 21 Oct 2001 18:32:47 -0400 "Linda Jansen"
<nids.lecture@...

Does anyone have any suggestions on what kind of bread a gluten sensitive child
should eat? What have people had luck with?

Well, we have the go-ahead from Dr G to start our 6 yr old son
on Kutapressin. A friend, also a nurse, will teach us how to give the
injections. Dr G said he'll prescribed some (Emla?) cream which will
numb the site for the injection.
Does anyone have any last words of wisdom? tips??
We highly appreciate the emails recd so far on kutapressin.
We haven't recd one negative comment. My research has also
not found anything negative on kutapressin.
Has anyone contacted NIH on kutapressin? Dr G mentioned that
a NIDS parent had .... I would be interested in finding out what
they said ...
On another area, we received the tests results back from the blood
taken in August for the food allergy workup. Overall - pretty good.
Sensitivities have dropped. A test done a little over a year ago
showed sensitivities to over half of the foods tested.
Recent workup is showing allergies to nuts, casein, garlic, brewers yeast
and honey. No allergies to cow meat this time.
So it would seem his immune system is settling down .....
There's a note written on the bottom of the results - "shift to the right"
I've seen this refd in NIDS articles and talks. Can someone
remind me what it means??
also, we're having stimms on this end as well. We think it might
be environmental caused. Whenever the mold count goes up,
the stimms increase. Maryland is such a lovely state to live
in at times.....Dr G says those of us in the East have been
'voicing our concerns' about allergies to mold and pollen.
:o)
Thanks!
doris
Maryland
sjsmith@...

Marcia,
Again, thank you for your words of encouragement. In our FloorTime program
(which is going very well at the moment) I am also incorporating my daughter
who is 7 in the last half hour. She loves it and it gives her a chance to
see what Colin is capable of. We also had a neighborhood boy age 9 come over
and play with him and Colin really liked it!! Thanks!! Kathy

the potential dangers of steroids are what happens when your body is totally
deprived of your immune system. You leave yourself open to major
infections, cancer etc. etc and I also heard something about
blindness

Mary N.,
yes, it does sound like Paxil. Depending on the length of time your son
has been on the medicaion also depends on the amount of side effects
that he will have. It takes at the minimun, two weeks for the body to
adjust to the levels of increased serotonin, norepi, dopamine, etc. in
the brain. However, if he has been on the med for a month and is
displaying these behvaiors, he needs another SSRI. Paxil is very good
for some and very not for others. It doesn't seem to have a middle
ground, from my observations and experience.
Diane,
I think that was your name! ( I am digest vs. individual emails). This
is the first time I have ever found someone who's son is allergic to
apples! So is mine! He gets diarrhea.....let me tell you, we use that
side effect or reaction, to avoid constipation or to assist him when he
is constipated! Apple sauce, juice and apples....yep. Good fruits.
<Grin
Darla

A post earlier this week from Ahead With Autism states they are
appearing on Oprah this Friday. The treatments consist of
prednisone, which was discovered accidentally when a child was given
the steroid for some other problem and he began speaking, sounds a
little like secretin.The side effects mostly consisted of huge weight
gain and excessive body hair, elevated blood pressure, irritability.
I have concerns that this may be very dangerous and that because its
being aired on Oprah, an awful lot of people may jump on the
bandwagon. Does anyone know what all the other potential dangers are?
Susan

I thought some of you might be interested in this.
Michelle
From: The Food Allergy & Anaphylaxis Network <faan@...
--=| FOOD ALLERGY & ANAPHYLAXIS NETWORK SPECIAL FOOD ALLERGY ALERT NOTICE
|=--
MILK ALLERGY ALERT
October 15, 2001
ConAgra Dairy Foods is voluntarily recalling 3,600 pounds of
Fleischmann's
Unsalted Stick Margarine with the UPC Code 298370 because it may contain
undeclared milk. The product can be identified with the "best if used by"
date on the carton of APR 15 02 EN 15 with time codes between 06:30 and
08:00.
The product was distributed in Connecticut, Delaware, New Jersey, New
York,
and Pennsylvania.
Consumers with questions may call (800) 257-5594.

Sending info....Lois

Hi there,
I just stumbled across www.ccid.org , I think if anyone is interested
in the science of stealth viruses, it's fascinating.
Susan

To All,
Just a reminder we are not following DAN physicians
with the NIDS protocol. We do not give secretin
injections. Please read the website neuroimmunedr.com.
There is hard, factual, logical and science proving Dr.
Goldberg's and other researchers, scientists and physicians
that the NIDS protocol will treat and even possibly cure
our children. We must start reading the info in the
neuroimmunedr.com website !!
Thank you,
Michele Davies

Flumadine/Rimantadine (generic) is an anti-viral used to treat various
strains of Influenza A virus.
---cyn

Wendy,
I appreciated your post on Celexa. Our son has been on Paxil, now 1/2 tab.
I have noticed worsening of his behavior and am wondering whether it is due
to Paxil. He has been escaping more from home and school, has had a more
erratic appetite. The last time we saw Dr. G. Patrick's eosinophils were
higher than ever, and I can't see any reason for it due to diet. He has been
more obsessive, turning on all the lights and wanting me to sit. He has had
episodes of anxiety, not knowing what to do with himself.
We are also having a stool test for parasites as Patrick's sensory seeking
behaviors have lead him to eat all sorts of filfthy stuff. If that comes
back negative, I will definitely suspect the Paxil.
mary n.

My son is now twelve and recovered. He gets straight A's, has friends and
socially appropriate. But it wasn't always that way. Fortunately, I had my
daughter first and because of that I knew what he was
suppose to be doing. He never gave me an indication one way or another that he
was ready for anything. When he was three and a half, I said I guess it is time
for toilet training and used the same methods I did with my daughter. The
difference was that she showed me she was ready, responded to my excitement, and
answered me. Although the same techniques worked, but he gave me no indication
one way or another that they did until he was trained.
One mistake I think parents make is that they stop talking to their kids and
interacting with them because they get no response. Believe me they are hearing
you even though there is no evidence that they care one way or another about
anything you say or do. In turn the parents stop interacting because they
think the child doesn't understand or can't. The hardest thing I ever did was
to keep talking to my child in a normal way when there was no response.
To teach socialization, I would borrow other people's kids. Playing with my son
was not fun because at first the other kids got no response. So I made my house
the Kool-aid place. I had the best toys, and the best treats. We even built a
Gucci playhouse, got a trampoline, a Nintendo or anything else that would be a
kid attractor. Anything that would make these kids want to come back because my
son was not fun to play with. Their parents loved it because it was free
babysitting that they didn't have to reciprocate. I had kids at my house at
least two-three times a week. At first they came for a short time and then
longer.
In the beginning, I was the one who played with the other kids. I had to
facilitate every interaction with other kids. Fortunately our guests loved
the one on one attention and always wanted to come back to play with me even
though my son had bizarre behavior. It was especially hard to watch the
differences between my child and "normal" kids. It took quite some time until I
could get my son to join in and years until he could do it solo.
At first he just hid in the back of the house when anyone would come over. We
used ABA and those techniques to help me know how to get him to do things that
were hard for him. In the short turn, it would have been much easier to let my
son be autistic. Easier to let him wander the house plugging in his portable
radio over and over again in every outlet in the house. Easier not to have the
confrontations when I expected him to do something he didn't want to do. I
didn't want to watch him scream when he didn't know what to do with other kids.
But if I had given in to him; he never would have learned the right way to
behave.
I remember not wanting to get up and do this again, but what choice did I have?
I could have let him be the best little autistic boy he could be or make him
join up with the rest of the world. Thankfully, I didn't give up and had more
stubbornness than he did.
Don't let your child be autistic and get someone to train you in ABA. It
won't work if you try to correct everything at once. Pick the one behavior that
drives you up the wall and systematically eliminate it using ABA. Ignore the
other bizarre behaviors. When that is accomplished, pick another one.
Catherine Mauice once told me to use what they love to reinforce appropriate
behavior. That was good advice.
Don't give up!!! With Dr. G and ABA, recovery is possible. Maybe not for all
kids, but how will you know if your child is one of the lucky ones
unless you try. It takes years and is the hardest thing you'll ever do, but
if you don't try you'll never know what might be possible for your child.
I thought my child would never be "normal". My motivation was to do
everything possible, so I wouldn't have guilt later. I had no idea my child was
getting better, even while I was working at it. The changes are so gradual and
take such a long time. I never would have seen my child in the school play
Annie flirting with Miss Hannigan if I had taken the short-term easier route.
He never would have learned to talk to people in the grocery store or have all
his friends over to play. Please give your child a chance at life. And contact
me if I can help.
Marcia

In a message dated 10/14/2001 8:14:57 PM Eastern Daylight Time,
cohnspencer@... writes:
I don't know about flumadine, but secretin worked for my son. Before
secretin, he behaved just as your son, Within a week of the first infusion
he began to interact with his brother then with other non-immediate family
members, then he would stay in the same room as other children playing but
not play with them. This increased with each infusion, 3 years later he is
very social, wants to play and be included he tries and sometimes succeeds in
playing, his now is learning how to properly interact with other children and
also still needs improvement in his speech (he's 7.7 years old)
Mary

Hi Michelle,
The rice protein that we use is from Nutribiotic out of California, I
don't have a # for them yet. It's called NutriBiotic Vegetarian Rice
Protein, although it contains no wheat I was told there is a slim
chance that one of the enzymes used in the process may possibly
contain gluten, so If you were deathly allergic it could cause a
problem. We decided to go with it and haven't had a problem. Our
nutritionist recommended we increase our sons calcium, she said it
should be around 700mgs per day, he's three and a half, I am using a
calcium and magnesium capsule because its premeasured and has no
flavoring added, it's easy to add to his watered down rice
milk/protein drink. The brand we are using is Natural Factors but
they are out of Canada. I think Kirkman Labs has a good brand.
Take Care, Susan

Any suggestions on how to get my son to act more socially appropriate
when around other children. Even when we go to see his cousins who
he loves he tends to "ignore" them, run into another run by himself
and won't socialize with them. As soon as it is time to leave he
gets upset becouse he doesnt' want to go. It is very strange to me.
Also, my father who is a pharmacist told me he read somewhere they
are using flumadine for autistic children, they say it acts as an
anti-viral. Does anyone know anything about this?

What kind of calcium supplement do you use? Dr. Goldberg keeps telling
me not worry about their calcium intake even though I'm sure they aren't
getting nearly enough that they should. Also, what rice protein powder
do you use? We stopped using it when we started with Dr. Goldberg.
Thanks!
Michelle
On Sat, 13 Oct 2001 12:44:47 -0000 dmccreary@... writes:

I'd be interested in joining/learning more
Mary

Hi,
LaureateLearning doesn't really state the age group or developmental age for the
software on their site, or at least I didn't see it. What would be a good
beginning program or, should I say, are any of these programs good for a
2yr.7mon. old boy who doesn't talk (PDD), but loves watching videos and watches
his brother play computer games. Would earobics be good for him. Thank you,
KathyP

Would anyone interested in starting/joining a NIDS group in the
Nebraska/Iowa/Kansas area please contact me privately.
Thanks.
Sharon
Aut2BMiracles@...

Scott Snyder, the parent of a child with autism, and the president of CAN's
Philadelphia chapter, works in Marketing on the Motrin brand at Johnson &
Johnson. Given his appreciation for GFCF and dye-free products, he has
pushed the company to create GFCF, Dye-free children's medicines under the
Motrin name. These are the first products of their kind (fever reducers and
cold products) available that are dye-free and GFCF.
Children's Motrin Dye-Free has the same great berry taste as regular
Children's Motrin,
so it will still be easy for your child to take. And Children's Motrin Dye
Free products are gluten-free and casein-free (GFCF). Available in stores
starting October 2001
We know there are many children who may benefit from this news, so please
pass this along to friends and family who may be interested. Questions?
Call McNeil Consumer Healthcare at 1-800-962-5357.

Hi,
Anyone intereted in joining a NIDS chapter in NJ and NYC area can you please
contact me with your email.
Rosemarie Covucci

Hi!!
Thank you so much for your words of encouragement!! Congratulations on the
progress of your child. We will keep on trucking!!! (Smile)
Kathy

I checked the gfcf diet list and it said goats milk and cheese
contain casein. We water down rice milk and add rice protein powder,
and a calcium supplement. I have also been experimenting with coconut
milk using it in french toast

I was wondering if others read this article and if they
knew how "unbiased" or "scientific" this article is?
We waffle on the use of ritalin. Twice now our child's
school and mentioned ritalin (no other complaints about
our child other than he doesn't alwways listen to
the teachers group instruction, he is a little impulsive,
talks too loud, and wiggles too much.) Our child's
doctor (goldberg) is nice for us because he has never
pushed ritalin. I was just wondering about this articles
validity. We were reconsidering ritalin and wondering
if our objections to it weren't merely personal as opposed
to what is best for our child.
Erika
American Academy of Pediatrics Guidelines for Treating Behavioral
Disorders in Children with Ritalin Ignores Evidence of Cancer Risks Warns Samuel
S. Epstein, M.D.
CHICAGO, Oct. 4 /PRNewswire/ -- The following was released by Samuel S. Epstein,
M.D., Chairman of the Cancer Prevention Coalition:
Based on an industry-funded multi-university trial on 282 pre-teen
children treated with Ritalin for attention deficit/hyperactivity
disorders (ADHD), just published in Pediatrics, the American Academy of
Pediatrics has endorsed the use of the drug. However, the Academy ignores clear
evidence of
the drug's cancer risks of which parents, teachers and school nurses,
besides most pediatricians and psychiatrists still remain uninformed and
unaware.
Some 40 years after the drug was first marketed by Ciba Geigy,
carcinogenicity tests were conducted at the taxpayers expense by the
National Toxicology Program, the results of which were published in 1995. Adult
mice were fed Ritalin over a two-year period at dosages close to those
prescribed to children. The mice developed a statistically significant
incidence of liver abnormalities and tumors, including highly aggressive rare
cancers
known as hepatoblastomas. These findings are particularly disturbing as the
tests were conducted on adult, rather than young mice which would be expected to
be much more sensitive to carcinogenic effects. The National Toxicology Program
concluded that Ritalin is a "possible human carcinogen," and
recommended the need for further research. While still insisting that the drug
is safe,
the
Food and Drug Administration admitted that these findings signal
"carcinogenic potential," and required a statement to this effect in the
drug's package insert. However, these inserts are not seen by parents or
nurses.
The Physicians' Desk Reference admits evidence on the
carcinogenicity of Ritalin, now manufactured by Novartis, qualified by the
statement that "the significance of these results is unknown," apparently not
recognizing that this is more alarming than reassuring. Apart from cancer
risks, there is also suggestive evidence that Ritalin induces genetic damage in
blood cells of Ritalin-treated children.
Concerns on Ritalin's cancer risk are more acute in view of the
millions of children treated annually with the drug and the escalating incidence
of childhood cancer, by some 35% over the last few decades, quite apart from
delayed risks of cancer in adult life. These risks are compounded by the
availability of alternative safe and effective procedures, notably behavior
modification and biofeedback.
There is no justification for prescribing Ritalin, even by highly
qualified pediatricians and psychiatrists, unless parents have been
explicitly informed of the drug's cancer risks. Otherwise, prescribing
Ritalin constitutes unarguable medical malpractice.

The large dilated pupils have to do with the CNS (Central Nervous System),
you see when the immune system is not working properly it also affects the
CNS and then the dilated pupils come into play. My daughter, 8 years old
started NIDS protocol in March 2000 and myself still get the dilated pupils.
It is good to keep your eye on them and perhaps you can further discuss
this w/ Dr. Goldberg!
Best Wishes!
Michele (NIDS chapter will be starting soon for the Metropolitan Area of NYC,
NJ
and perhaps CT)
isoaa@...
(201)703-1060
FOR ANYONE INTERESTING IN BECOMING A MEMBER!!!!!

I would be very interested in speaking with you as well. We have one child on
our waiting list for our clinic with ODD and I have been wondering how he
would respond. What behavior management programs have you tried? Did you see
improvement with any? Any that you think are a definite waste of time? Kathy
NIDS-NNY

Pupil size is only one piece of the assessment of the eye or the central
nervous system. Shape, size in relationship to each other, and reaction to
light are all things that have to be examined and then integrated with the
history, and presenting problem. In terms of the so called Leaky Gut,
increased permeability of the gut is a very well recognized symptom
associated with a number of diseases. First the increased pupil size has to
be proven by objective measurement, and then investigated. Kathy NIDS-NNY

If headache was a common side effect of a certain medication then you would
be suspicious if a child who did not have headaches began having them after
starting a certain medication. Obviously any changes in the child has to be
reported to the individual that prescribed it. In terms of the liver. Many
medications are metabolized through the liver. People who are on those
medications for an extended length of time usually take liver function tests
periodically to check for abnormalities. Two of the best antibiotics for TB
have caused a few rare deaths due to liver damage, however TB without
treatment causes a much higher percentage of deaths. Every drug has side
effects and you have to weigh the risks against the benefits. Having seen the
brain tissue destruction on the neurospects I'll risk my daughter with the
antibiotics but watch her carefully for any changes and get her bloodwork
done when necessary. Kathy NIDS-NNY

Erica,
I was wondering, you mentioned about the child's eyes being dilated as part of a
criteria you would ask about. My son's pupils are sometimes really huge. What
does this mean? He is 2.5 yrs. old. Thanks, KathyP

as part of a criteria you would ask about. My son's pupils are
sometimes really huge. What does this mean? He is 2.5 yrs. old.
Thanks, KathyP
In a nutshell: I dunno. :)
I have read a number of things about the dilate pupil connection
and ASD. Some people equate it to the drug effect that gluten
and casein can have on a leaky gut. The only problem with this
though is that we are STRICT gluten casein free people- even
our soy sauce is kept free.... Thus, this theory doesn't work
for us but there are others who claim that pupil dilation and
diet were directly related for their children and perhaps for
their child it is true. I have a motto of late: nobody
knows anything and if they say that they know all there
is to know, then they really don't know anything. :)
This is from this site:
http://www.inlandempireasa.org/new_page_2.htm
The autonomic nervous system: There is a part of your whole nervous
system that is not voluntary, the autonomic nervous system (ANS). It
receives messages from your internal organs and tells you your
bladder is full or your heart is pounding. Messages from this system
go to your muscles and glands, like the adrenal glands that secrete
adrenalin. One part of the ANS is called the Sympathetic Nervous
System (SNS)--it is the fight, flight, or fright system. Dilation of
pupils is an indicator of SNS arousal. Your whole body reacts just as
strongly to anticipated stress as it does to real stress--it doesn't
recognize the difference between anticipated or real stressful
situations. The other part of the ANS is the Parasympathetic Nervous
System (PNS). This system restores your energy and puts you back into
a relaxed state. The PNS counterbalances the fight or flight action
of the SNS. Many children with autism appear to be on sympathetic
arousal for a long time until they run out of energy and suddenly
collapse. Reisman looks to see pupil dilation in nonverbal children
to determine whether the child is in sympathetic arousal.
From another page:
ANS - Autonomic Nervous System
http://bcn.net/~stoll/wwwboard/a_gloss.html
An entire little "brain" unto itself. A control system of two types
of nervous systems that actually oppose each other in their actions.
When we are under stress, the activating aspect of this system, the
sympathetic nervous system evokes the responses characteristic of
the "fight-or-flight" response: it increases pulse and blood
pressure, cools the skin, causes sweating, activates the production
of sugar, pupils dilate, and the digestive system is put on hold.
Conversely, the parasympathetic nervous system, the quieting aspect
of the ANS, counteracts these actions by slowing down the body,
including: slowing the heart, constricting the pupils, stimulating
the gut and salivary glands, and other responses that are not a
priority when being "chased by a tiger". The state of the body at any
given time represents a balance between these two systems.
Other things that I have heard about pupil dilation:
1. adrenal insufficiency
2. Mercury toxic
3. Some narcotic poisoning can result in pinpoint dilation
etc.

Hi,
I am looking for a parent or parents who have a child like mine. The
criteria being
1. Child is under Dr. Goldberg's care.
2. You have had a neurospect and it indicated oppositional disorder.
3. Your child is aggressive, screamy, etc.
4. You have tried treating all these behaviors and have not been
successful, or you have been and will tell me what worked for you.
5. You suspect that SSRI's are not beneficial for your child.
Those are some of the issues I am battling with. My daughter is 7 years
old and her aggression is getting worse, not better. She has been
treated by Dr. Goldberg for 4 years and she is just not getting better.
SSRI's have done nothing for her. Kutapressin has normalized her
labwork. So even with normalized labwork, she is not better. My older
daughter has responded much differently. She had great results from
SSRI's. Her labwork has normalized as well but she still has language
issues that are being worked on. If anyone recognizes this child I
would like to hear from you, either on the list or in private.
ajmarron@...
Lici

When I got valtrex at the pharmacy, the pharmacist said that this was not
approved for children, never saw it cut up, on and on. When I renewed the
prescription for Diflucan, the pharmacist asked if liver function tests were
being done, this could cause liver damage and on and on. I was concerned.
So I did my own research and found that liver damage from Diflucan is RARE and
when it occurs it is reversible when the mediccation is stopped.
Courtney

Kathy,
My son is now thirteen and recovered as a result of Dr. Goldberg
and ABA. My son got worse (if that was possible) before he got better. I
remember the tears and depression when we thought we were going backwards. At
times it was hard to continue when we weren't sure we were doing the right
thing. In the beginning was how to tell which medical interventions were
working. How can you tell if medicine is working when your child has limited
verbal ability? It takes years for a "normal" child to learn language. Even if
someone could wave a magic wand made my child's body normal, he still wouldn't
have been normal. He spent too many years not speaking, not learning what he
should, and learning weird behaviors that helped him survive this hell. It took
many years to reteach him. I know my son would not be okay if we had not found
Dr. Goldberg and done ABA.
When Ryan started kindergarten, he was in the third percentile for
speech. When he was tested again in the third grade, Ryan was at the 85th
percentile. Fortunately, we don't need to have him tested anymore so we don't
know exactly where he would score today. On his sixth grade report card he
brought home all "A's. " But more importantly, my son is happy, has friends,
and succeeds socially. For someone who had to be taught almost every social
skill, Ryan now has a great group of friends.
The interventions both medically and behaviorally were not an
instant "cure". We worked at this twenty-four hours a day. No one other than
a parent can be that obsessive and stubborn about continuing when sometimes
there were no signs that my son was getting better. The hardest part was to
keep going. When he was little I really didn't believe he would ever be
"normal." His behavior was so bizarre. Even though I thought he would never be
okay, I did many things so I wouldn't have guilt later. I wanted to be able to
say I did everything possible to make my child better.
When I had trouble continuing, I would play a tape in my head that they thought
Albert Einstein had Autism. (Stories of his early life are very interesting.
You can tell he was a member of our club.) I was sure my child would be
brilliant like Albert and would hope he would only be a little quirky like him
too. When that didn't work, I sometimes thought of my son as a stroke victim
that I had to teach everything to, stuff that other kids just learned. These
are just a few of the mind games I used on myself when the roller coaster was at
the bottom of the hill.
My husband and I had many arguments over what was right for Ryan because this
kind of hell causes a lot of tension in the home. When we got this diagnosis,
all the dreams for our son were gone. Sometimes I thought my husband didn't
care because he didn't know what to do, so he just tried to ignore the problem.
Men are different than woman, we want to talk about this so much that none of
our friends want to hear about it anymore. That is our way of coping, but most
men just "go into their cave" and don't want to talk. If they can't solve it,
they don't want to talk about it. But he did care and when I showed him what we
needed to do, he worked at this just as hard as I did. Improvement takes time.
Sometimes you are so fixed on the things you still need to teach them, you
forget to notice all the things they have learned and accomplished.
My kid is going to make it, but there are too many children with autism that
never will. Some of the parents have given up hope of ever helping their
children. I want them to know that our kids can get better. We saw too many
medical doctors that had no understanding or knowledge of autism. Most
physicians did not even perform a cursory exam on my kid. They didn't believe
autistic kids could get better. They had nothing to give us, not even hope.
Unless you have experienced it, I don't think anyone can understand just how
devastated you feel when your child is given the diagnosis of autism. I hope we
can get the message out so other parents don't just accept the life sentence
that well-intentioned but misinformed doctors are handing down. Don't give up.
Your kid might be one of the lucky ones who can recover completely.

In a message dated 10/7/01 6:43:56 PM Central Daylight Time,
eahcsc@... writes:
<< this
Erika,
Thanks again for your response. What bloodwork normalized? We have never
redrawn our viral titers and it has been almost a year and a half. I would
really like to do that with our next blood draw. Again, thanks for your feed
back!!! Kathy

convinced that Colin has really only improved marginally. My husband
will not provide me
Well, there is always the blood work that can help show
"proof" of improvement. Our bloodwork is less
"abnormal" than two years ago. :P
Have you ever tried giving him something specific to
give "feedback" on? There are a couple of things that
occur: some parents do so much want their child to improve
that they see improvements when really, the improvements
are only marginal. On the other hand, sometimes we "forget"
things that used to happen. A recent thread on the Me-list
reminded me of something and I said "gee.. I totally forgot
that my child used to do that." Part of my problem is that I
am always tackling a problem and then on to the next. I tend
to forget to stop and evaluate. I now go back every six
months and say to myself "Six months ago, he used to do this
and six months ago, he couldn't do that." It is nice to remind
myself of all the little things he used to do and all the things
that he now does.
My child is 7 now. We hide the label. We can't hide it from
his school because they fund our ABA program. :P Most people
assume he is a gifted/ADHD child. I recently went back
and six months ago my child:
didn't defend himself when falsely accused.
Couldn't tell in sequential order about an event when conflict occured
Still had series syntax errors
couldn't follow a three step instruction with tons of fluff language
in it (ie, okay class. Today we are going to learn about primary
colours. I want you to take your seats but oh. first wash your hands!
Okay, when you take your seats, you will see a stencil in front of
you. I want you to stencil the picture of the house. See my house?
This is my favourite house...")
Had trouble recognising "cognitive conflict"
had trouble recognising sarcasm
Had trouble telling when he was being bullied
He now knows all of the above. We are now working on other issues
that I hope I can say he doesn't have in another 6 mo nths. :)
There are some other issues for us that were also telling
in the improvement area: our child stopped all ear infections.
our child only had one "bowel" incident where he had chronic
bowel trouble before starting biomedical interventions. He
doesn't wake with night terrors. He doesn't laugh himself to
sleep at night. He has no more eczema. He is not sick EVERY
month. Now, he gets a small cold every year and that is about
it.
That is something that ABA didn't help with. :P
Erika

Hi Kathy,
I understand your post. I am a complete follower of Dr. G.. But, if a child
is nonverbal, how do we know whether a particular medication (anti-viral
etc... ) is or is not causing a headache? Being on the meds, doesn't that at
some time take its toll on the liver? Again, I don't mean to stir things up.
I am just questioning!! Thanks!! Kathy

Neil, I am forwarding your letter to a wonderful friend of my husbands and
now mine. He is a specialist in cancer treatment now but was the youngest
helicopter pilot in Viet Nam. He went to flight school with my husband so
they have known each other for many years. I hope that he can help your
relative. Kathy NIDS-NNY

Remember this is a disease. These kids have systemic problems. Having a
normal GI system, not having headaches, not becoming a diabetic, having a
normal thyroid, having a normal liver, are just a few of the benefits of the
NIDS protocol. Kathy NIDS-NNY

Erika,
Thank you so much for the pointers. I will pass this on to my friend and it
will help me in evaluating my son. It is very hard for us to do this. I
have to hand it to Goldberg for treating our children even though we are far
away and taking our word for it. My problem is that I want to see positive
results so my opinion is skewed at times and my husband is convinced that
Colin has really only improved marginally. My husband will not provide me
with feedback. It is very frustrating to me because I feel like I am in on
this all by myself!! I appreciate your comments!! Kathy

We get mocha mix at the regular grocery store- both chains in my area- Jewel and
Dominicks carry it in the same freezer with the ice cream and frozen yogurt.
Courtney

here are things that I personally think that people need to do:
1. not tell everyone (teachers, therapists, neighbours, the
butcher) about what new meds you are trying or have just stopped
or... This is because you need some objective data and viewpoints.
I remember back when we tried SuperNuThera. My husband and I were
convinced it "might be helping". my son was on it for about two
months. Then.. I unilaterally took him off it without my husband or
anyone knowing. After being off it for 2.5 weeks, I
started "pressing" people for whether or not they thought he was
doing okay. Now.. I did this so as to not arouse suspicion-
I didn't say "does johnny seem different?" Instead, I might ask "is
he tantrumming less now?" or "is still zoneing out lately or has
that improved?" Everyone-
husband and therapists all said that they saw that his behavior was
fine if not a little better recently... I then knew that
SuperNuThera didn't really do it for us. Now a sneakier option would
have been to put him back on to see if his behavior worsened or
continued to improve or "stayed the same."
2. Have consisted measurable data. I will admit that I have a
real issue with the "brighter eyed" thing. It seems way too
subjective for my tastes. So, I have all therapists do a "behavior
notes" with a checklist for them to "rate". I also do it myself for
days that there are no therapists present. My behavior data has
things that can vary slightly from therapist to therapist such as
"moody?" rate 1-5 and things that are more concrete like:
tantrummed? y or n or Are his eyes dilated? yes, a little, no,
they are constricted. This data really helps me track patterns and
was responsible for me being able to say with 100% certainly that
switching to generic prozac was very very bad- something that shocked
me because I didn't think my son was all that "sensitive" to much
besides casein and gluten.
I also try to introduce things one at a time. Starting an antiviral
and a "wh" question program in ABA at the same time and then claiming
that your child started to understand WH questions when he started
antivirals is misleading. It doesn't helpyour doctor really
understand what is going on either. However, making very little
progress or no progress in wh questions and just "suddenly" getting
it witha change in medications is a little more useful to a doctor.
Don't fire all your therapists and get three new ones and then
call your doctor and say that you think a medication might not
be working because your child is being noncompliant. :)
The placebo affect is a very real thing and it is not fair to your
doctor if you don't provide some measurable proof for what you tell
them. Someone like Goldberg has to take a parents "word" for it
during telephone consults and if you haven't come to your conclusion
in any sort of measurable way, then I think that it really misleads
the physician in charge... [ just like the physician is going to
have to actually listen to you when you say that something is not
working even though it works for 99.9% of his/her other patients ]
Erika

Hi All,
It is looking like the east coast talk in Boston Ma will take place on
Saturday Oct. 27th around the 1-2 pm range to 6:30pm or later. Lecture will
probably occur in the Waltham Massachusetts area. Will post when more
details are available. For those interested, please e-mail
nids.lecture@...
Thanks, Linda

We tried biofeedback for a short period of time- it was too expensive. The
speech path we went to charged $75 for 20 minutes of biofeedback and of course
insurance would not cover it. My daughter did not like the leads put on her
earlobes and head. She sat about 5 feet away from a computer screen to play a
game like "pacman". when she looked at the screen, pacman would gobble dots.
When that screen was finished, there would be a new screen in a different color
with a different pattern of dots. Since my daughter was only 4 she was not too
interested in pacman. The idea is that by watching the screen and
concentrating, your brainwaves reach teh level best for learning, etc. The
technician can set the machine so that it is harder or easier. I tried it
be