Nids

tonsillitis. The doctors keep pumping him full of antibiotics...
The same is happening to a special boy (5) who lives down the street
I asked if he had a nappy rash. Yes.
(Yeast)(Antibiotic overdose)
So I told them to stop the antibiotic immediately
and see the doctor.
Perhaps he needs his toncills out.
What else can one do?
--
http://members.xoom.com/Neil_S_Clark/autism.html

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

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 Scott and
Tara, and my grandson is Hayden.
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.
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.
very special to us, but it does get very exhausting. Scott takes 84 tablets a
week to control the PHHI, ADDH combination and has had this level of medication
since he was little.

Hi all, my name is Beth and I live in Victoria, 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 Scott and
Tara, and my grandson is Hayden.
Scott 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 Scott 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. Scott 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

You need to get the text of the full article and probably speak to the
researchers themselves. I have a copy of the article and it says "Each child
received an adequate open-label treatment trial of fluoxetine; optimal doses
ranged from 0.2 to 1.4 mg/kg/day based on best treatment response without
intolerable side effects" (p. 552). Hope this helps.

There is still time to register for the "Defeat Autism Now" "DAN" conference
to be held on Oct.2nd & 3rd,1999. Registration Deadline is Sept.24th.
FAX your name, address and telephone number along with your charge card
number, expiration date and card holder's signature. Specify which day(s)
you plan on attending.
Wellness Workshop
Fax # 973-948-9674
RE: Registration for "DAN" Conference
October 2nd & 3rd, 1999
@$125.00 a day
The following website has more information regarding speakers, topics, cost
and lodging.
http://www.cddatabase.org/DAN.htm

The physician I was talking about is Dr. Massimo G. Montinari, who teaches
pediatric surgery at the university of Bari, Italy, and works at the hospital in
Bari. He carried out a study, together with other collegues, on 30 patients with
disorders of the central nervous system, including some autistic kids, in 1994,
1995. These patients had their first symptoms after an immunization. They had
their blood tested for HLA and immune panels. These physicians wanted to
determine a correlation between the onset of the disorder of the CNS and
specific antigenes (seen with HLA tests), in order to explain a possible
immunogenetical cause with autoimmune characteristics and demyelination
following some immunization.
They found out that in 73% of cases the antigenes A3 and DR7 were present.
Referring to my son and the hepB vaccination, Dr. Montinari said that according
to the presence of autoantibodies against myelin and of a specific antigene, it
was clear that his bbb had been impaired by the hepB shot. (The first autistic
symptoms appeared 3, 4 weeks after the shot).He also told that just the day
before he and other collegues had published some articles about a link between
HepB vaccination and autism.
He prescribed bio-enzymes to reactivate the mitochondrion at a molecular level
on the damaged trait of the blood brain barrier,and said that there had been
good results with these substances, also that autoantibodies had disappeared.
The products are: Bioenzima 2 with rodizonoic acid richinoyl, Glyoxal,
Methylglyozal and Dimethilglycine (He takes DMG already with good results),
Bioenzima 3 withPolichetone and Dmg as well, and then gangliosides for the gut,
to prevent the onset of toxins, that pass through the bbb of these kids very
easily.
Once I read somewhere the translation in english of this study, but I can't find
it.
Laura from Italy

Hello everyone. I am reletively new to this site but have been doing alot of
reading (all info. is so interesting). My son is 5, recently diagnosed PDD/NOS.
After speaking with other parents I am suspecting my son is having difficulty
with milk/dairy. He has some signs and symptoms. My question is if I start a
casein free diet (for awhile) should I also go gluten free? He has been
complaining of a stomach ache for sometime now but his doctor and I associated
it with other things but now I am wondering if the stomach pain and red ears are
associated with the casein. Are these the same signs for gluten? I am very
confused about how to word this since this area is so new to me so please bear
with me. Any advice would be helpful.
Also, for children who are on any of the diets, what if the child attends
school where he eats breakfast and lunch with all of the other children. Do you
pack ALL OF THE TIME? Do any of you ask your schools for their food ingredients
etc? Help please. Thanks to all and your efforts. Since I am new to all of
this, I can tell it will be easier for me due to you previous efforts/progress.
Thanks! Lisa

Hi Lisa
I was looking for my favorite report by Lisa Lewis and came across this
website that looks phenomenal! <A
HREF="http://www.fastlane.net/homepages/thodge/archive.shtml"
List Archives</A
There are direct links about gluten intolerance with respect to autism and
other disorders. Check it out.
Also, I make about 99% of my son's school lunches. I pack him microwave
french fries, garlic bread (rice bread toasted), g-f cookies, a fruit, and
sometimes a meat slice. For birthday parties at his school, he has some
frozen g-f and c-f cupcakes in the school freezer that are thawed when
needed.
Dietary changes are a difficult decision for parents to make because of the
amount of planning and preparation. Once you do get into the swing of it, it
becomes second nature (and you won't mind being a short-order cook! :) ).
Health foood stores usually stock some good foods, plus mail order is a life
saver! The Gluten-free Gourmet is pricey, but they have great mixes. I order
their bulk pizza/bread mix and pizza is favorite of my son's (with no cheese
or a non-dairy cheese). (www.glutenfreepantry.com)
One note: be prepared to waste a lot of food until you find recipes and
alternatives he will like. Don't give up. There really are palatable foods
out there!
I believe that finding the foods that your child can and can't consume
results in dramatic results. You will be so happy you changed things for him.
Becky

The Human Genome Project has been in conception and realization a
tremendous undertaking, a project to map every single human gene type.
This tremendous and highly technical biological resource database will
become available on the World Wide Web and applications for this
information are incredible to imagine. For example, one could determine
from their genetic makeup their possible negative reaction to a specific
drug. A New York Times article (link and excerpt below) discusses this
development and some of its implications. Links to websites related to or
relevant to this article are also included below. In legal work consider
the role of the availability of this information in the area of DNA
testing to identify crime suspects.
.....Source: New York Times (NYT)
Author: LAWRENCE M. FISHER
Title: Surfing the Human Genome Databases of Genetic Code Are
Moving to the Web
Source Date: September 20, 1999
Resource Type: News Article
Description/Keywords: Human Genome Project, Databases, Gene Structures,
Internet/WWW
URL: Listed Below Article Summary
September 20, 1999
Surfing the Human Genome
Databases of Genetic Code Are Moving to the Web
By LAWRENCE M. FISHER
SAN FRANCISCO -- Call it an end-of-the-century business
casestudy.
Pangea Systems Inc. is a small but leading company in
"bioinformatics," a hot new field that combines the two keystone
technologies of the 1990s -- computing and biotechnology. But its
products are expensive and difficult for mortals to use, which limits
Pangea's potential market and reduces the prospects for a public stock
offering.
What to do? This being 1999,
the answer if you are Pangea is
to dot-com yourself.
This week Pangea, which is
based in Oakland, Calif., intends
to begin a shakedown test of
DoubleTwist.com, a new Web
site intended to make online
genetic and biological research
fast, easy and available to any
amateur or professional biologist.
While the test phase is available
only to faculty and students at
Stanford University, the site is
scheduled to go live for general
use in December.
The DoubleTwist site, whose name is a play on the double-helix
structure of DNA, holds the near-term promise of lifting Pangea above
the pack of competitors chasing the business opportunities in
bioinformatics. But other companies may not be far behind. And the
implications go beyond the interests of professional biologists and
biotechnology executives.
Web Sites Related and Relevant to this Article:
Pangea Systems Inc.
http://www.pangeasystems.com/
DoubleTwist.com
http://www.doubletwist.com/
Celera Genomics Group
http://www.celera.com/home.asp
Human Genome Project Related Websites: A Selection
http://www.ornl.gov
http://www.nhgri.nih.gov/Policy_and_public_affairs/Communications/Publications
/Maps_to_medicine/
http://www.gene.ucl.ac.uk/hugo/
http://www.ornl.gov/hgmis/
http://www.hgmp.mrc.ac.uk/
http://www.stanford.edu/group/morrinst/hgdp/faq.html
http://www.ncbi.nlm.nih.gov/genome/guide/
http://www.hgmp.mrc.ac.uk/GenomeWeb/misc-descriptions.html
http://artnetweb.com/artnetweb/projects/clarke/genome/list.html
http://www.mag.com/links/genomelinks.html
GeneSolutions.com
http://www.genesolutions.com/
Informax Inc.
http://www.informaxinc.com/
Lion Bioscience AG
http://www.informaxinc.com/
Compugen Ltd.
http://www.compugen.co.il/
Genomica Corp.
http://www.genomica.com/
Molecular Applications Group
http://www.mag.com/
Netgenics Inc.
http://www.netgenics.com/
An abstracted citation for this story will be archived in an edition of
E-Carm News at http://www.ecarm.org
Full Story May Be Read At:
http://www.nytimes.com/library/tech/99/09/biztech/articles/20gene.html
.

Sounds like its looking positive. The neutralizing allergy shots we
did on my teen really made a difference. He wasn't getting sick all the
time anymore. I just wish all of this would get figured out. If you
have a,b,c abnormalities, treatment d works if you have e.f.g
abnormalities, treatment h works. Wouldn't that make it so much easier
for all of us. Someday........
Cheryl

Dear Jeff
Could you explain to me what is EPD ?
Thanks
Martha

A traveling Aspergerian reporting in:
Howdy folks,
Enroute from Hammond IN, "near" U of Chicago med library, I had a
wonderful visit with Maura and Jonty, then resumed the westward
journey, will now obtain some articles from the med journals here in
Vermillion SD, wherein the med library is a tad (or several tads)
smaller than those in big cities...
Teresa

Hi again,
I am the original poster of the Goldberg/DAN question. I have been sitting
here catching up on all of my emails (I get digest form), and want to
apologize for stirring this whole thing up. WHEW!! While I did post this
question to get others opinions on the matter, I did not expect such a
response. I hope my bringing up the issue has not offended anyone as a
result. I consider myself very self directed, in that I never put all of my
eggs in one basket (with just one treatment type). Rather, I glean from all
different kinds of ideas and theories and therapies to help my son. I do
believe in the whole Goldberg theory. I believe he has the right idea. I
knew he did not totally agree with all of the DAN docs and their theories
and treatment plans. I was still going to go the conference. But, after
talking to Goldberg on a phone consult call, I changed my mind. I AM torn
on this decision. But, because of other outside circumstances, I am not
going to go after all. Part of me wishes I had not cancelled. I have an
overwhelming desire to always know the most recent ideas on autism and not
be "left out". I hope by not going I will not be "left out". I am sure I
can order the tapes or something. Or better yet, I can hear what all ya'll
have to say after you get back from the conference. In some ways, that is
even better.
Anyway, I hope no one got their feelings hurt. I do appreciate all of the
responses, either pro or con Goldberg. It is always beneficial to hear both
sides of the story. How else can one make an informed decision?
Sorry for the fuss, and thanks again,
Trina

In a lay person's answer to your question--casein is a protein and lactose is
a sugar. Either one or both can be a problematic ingredient for our kids.
On our dairy free diet, we stay away from both of them if they are listed as
one of the first 5 or so ingredients. Hope this helps. Lori

So far Caleb has only had EPD 2 injections. Because he is allergic to many
environmental elements and food types, we don't expect to see any
significant improvements for at least 4 more injections which is 8 months.
It is worth noting that after his last EPD shot he was rubbing his eyes and
nose quite a bit less for a couple weeks -- however, this may have been due
to a lowering of pollens and such which is no longer the case as ragweed is
pretty high now.
We don't expect EPD to be a cure for autism, just something that will help
Caleb with his allergies and that is less stressful than getting several
weekly shots. EPD has been very effective in Europe.
FWIW
Jeff

Hello to all,
We are in the process of making a decision as to whether or not to take our
son to see Dr. Goldberg. We have read many of his articles and have even
asked questions on the net that he has answered. After reading some of the
post we have some second thoughts as to whether to follow thru or not. We are
desperate to do anything to help our son but when one is in the lower bracket
of income it makes it hard to do the things that others are able to provide
for their children. We read about people who are able to do ABA, AIT,
Secretin, PT, OT, etc., and think "if only." We live in Indiana so it would
not be an easy thing for us to see him but are willing to raise the money
somehow if it is really worth it. We have been trying to find ways to make
extra money (even my 15 year old is looking into trying to get a job to help
her brother) just to be able to make this visit happen. Bottom line is that
we do not want to do all these things just to walk away disappointed and
thousands of dollars in debt. We know that we are asking a lot but please
give us some information that will convince us that this is the route to go.
By the way, we have been GF/CF for 2 1/2 months and have seen an improvement
in our son. Thanks in advance.
Gary and Michele

I looked up the abstract for the study done by Robert Delong regarding
Prozac(ncbi.nlm.nih.gov). I could not determine the dosages they used in
this study. My daughter is currently taking 1/2 of a 10mg tablet of Prozac
every morning. She is doing well - but is this the level that they used in
the study to get the positive results? Any help would be appreciated.
Bonnie Marshall

Hi all,
Here is a question. In the ingredients of medications (for ex. iron, ginko
biloba), if lactose is listed, does that mean that casein is in that
product? Can there be lactose without casein?
Trina

The study at Duke University on Prozac involved 37 children. The study was done
by Robert DeLong and published in August 1998. You can find an abstract of the
study at http:www.ncbi.nlm.nih.gov. The results of the study were extremely
promising - around 60 percent (22 of the 37) had a "beneficial" result with 11
children able to attend mainstream classrooms. Those that did best had a family
history where depression had been a problem. Some of the "successful" children
were also doing ABA and the Prozac helped these children to progress more
rapidly through the programs. My recollection is that prozac had to be
continued to retain "gains".

Well said; like you I have seen tremendous gains in my children. And to
satisfy the skeptics (and check myself as well), for years I into'd new meds
, changed SSRI's, adjusted dosages "blind": The children's tutors were
unaware of any changes, then I could refer to their detailed notes, the
children's performance, and feedback from teacher's to add to what I
perceived as "working" or "not working". Dr. G has been a godsend to us; I
have friends who chose to switch to different physicians and whose kids are
doing well also---GREAT---we're all in this together.
Kate

I am sorry Dr. Goldberg could not help you. You are entitled to your opinion.
But
dont insult the great number of parents who see their kids doing better since
they follow Dr. Goldberg's prescriptions. And YES, it is not just the diet. And
yes, SSRI make a difference. When we stop them, it shows. Big time. We are not
idiots. And NO, he does not prescribe the same drugs to everyone. I know enough
parents to tell you that it is a fact.
If you knew anything about my son condition, you would not write that the
auto-immune dysregulation is "bull".
As far as insulting Dr. Goldberg himself, accusing him to seeking money and
recognition, I find it utterly pathetic. If you were not, like me, parent of a
sick child, I would not forgive your lack of decency.
I have seen Dr. Goldberg do for parents things no doctor does. Like answer their
questions until 2 am after a 8 hour work day, listen to their observations, be
open to many types of therapies, accept his mistakes, admit his doubts, correct
his approach, travel all over the US to see patients, answer questions from all
on a web site...
Can anyone on this list understand that not all kids are alike, that not all our
problems are the same, that there is no magic cure, no one size fits all therapy
?

in food and the atmosphere. Many cases of cancer, chronic fatigue syndrome,
immune deficiencies, lung and nerve damage, asthma and hay fever can be
directly traced to chemical residues in our food, homes and workplaces,
according to a former government adviser.
biochemistry and food safety, follows last week's government report which
showed that some foods on sale in supermarkets, including Marks &amp;
Spencer and Tesco, contained more than the legal limit of chemical residues.
mystery illness in 1988, later linked to pesticides. One boy almost died
and the other was seriously ill for months before it was discovered they
had been poisoned as they played in a field next to abandoned barrels of
agricultural chemicals.
Agriculture in the Sixties, and I am convinced we are being suffocated by
them,' said Routledge. 'At least a third of all ME cases are
pesticide-related. Add to that cases of immune deficiency, asthma,
irritable bowel syndrome, food and chemical allergies, the 7,000 or so
farmers affected by organo-phosphates in sheep dip, and I think the half a
million figure is conservative. Even hay fever may be triggered by
pesticide bound to pollen.'
overwhelming evidence to ban pesticides. Pete Riley of FoE said: 'It's
extremely refreshing that academics are prepared to come out and reveal
what is happening. We know millions of people have been exposed to harmful
pesticides in drinking water, in food, in the air, in the home - everything
from cats' flea collars to children's medicated shampoos...
of pesticides are unknown. In July it banned the chemical lindane from use
in seed coating because of the effects on factory workers handling it. But
it is still legally used on fruit and vegetables in the field.
products tested contained traces of pesticides above the legal limit. But
John Bainton of the Pesticide Safety Directive said: 'None of the findings
here poses problems for human health.'
for the true risks to be understood. 'Surveys have shown that one in five
sheep farmers may suffer from the effects of organo-phosphates in sheep
dip, but it is difficult to isolate cases.'
said: 'The pesticides safety directive produces a report every year and
this last one showed 98 per cent of everything they tested was at or below
the legal pesticide residue levels. There isn't a problem for consumers and
what they are eating. But we are looking to reduce the direct contact that
farmers have with sheep dip and obviously we are looking at ways to scale
down the use of organo-phosphates, but they do play an important part in
the work farmers do.'

Laura,
Where do you get them? Thanks, Lois

damages from vaccines in autistic children), who has come to the conclusion that
his blood brain barrier has been damaged by the hepB vaccine, according to his
HLA bloodtest, his positive test for autoantibodies against myelin and his
story. He prescribed byo-enzymes. (I will buy them tomorrow).

My 8 year old son was seen by a doctor in Italy (who made a study on possible
damages from vaccines in autistic children), who has come to the conclusion that
his blood brain barrier has been damaged by the hepB vaccine, according to his
HLA bloodtest, his positive test for autoantibodies against myelin and his
story. He prescribed byo-enzymes. (I will buy them tomorrow).
Has anyone ever heard of such a therapy?
Thank you
Laura from Italy

Regarding Vijendra Singh's recommendation that my 40lb son receive no more
than 1/2 capsule/day, this came from a phone conversation I had with him a
month ago. Dr. Bradstreet originally was recommending up to 1 capsule for
every 10lbs/day but changed this recommendation based upon adverse reactions
(especially right after secretin infusions) various children were
experiencing down to no more than 1 capsule/day, I believe, regardless of
size.
FWIW
Jeff

stumped.
Do they take Prozac too?
How else would they know.
IMO
--
http://member.xoom.com/Neil_S_Clark/autism.html

IMO To get any so called expert agreeing with any other,
would be a miracle.
In my experience, everyone has their own opinons,
and usually anyone elses opinon is to be ridiculed.
There are lots of things dangerous,
Glutein or Casein if one is intolerant.
For me it's potatoe chips.
Everything is trial & error.
It either works or doesn't
thats the important part.
--
IMO Neil

related?
--
Everyone sees things differently.
I don't see the scientific base for ABA
The basic fountain 'principale' is non-scientific,
a guess at best.
But who cares as long as one feels it helps.
The scientific base is relatively unimportant
in relation to results achieved.
Although it would be nice for scientific theory
to be based on results.
So if one feels that ABA makes a dramatic difference
to 5% of those who start it.
Would one then scientifically say ABA
is relatively 95% unscientific or effective?
Heck I personnally would go with anything that
had a 1% chance of doing something for my child.
But thats not scientific.
Well you may say 'You feel' that ABA makes
a difference to 50% of those who start it.
That's very scientific,
just like tossing a coin heads or tails.
Well you may say 'the program is scientific'
after all it's based on 'repetitious trials'
similar to so called mindless 'patterning'
True
Hopefully something can be achieved by
making & correcting error
with a set of rules & set reponses,
to an attempt, in a patterning or repetitous way.
After all 'Behavioural Intervention' scientifically
may alter Behaviour.
But what has it got to do with Autism?
repair a damaged motor cortex.
One principale that many believe in is:
"Use it or lose it"
Patterning is not only using it, but keeping the potential alive.
Remember the body seems to have a memory.
The brain & body is supposed to be alive.
It has some potential for growth & repair.
If there wasn't why bother with an Autistic child?
I suppose if one goes through the motions enough
there is at least hope.
Even if it is my trial & error.
--
IMO Neil

Please unsubscribe dthomps8629@...

Is there another name for Kutapressin? I can't find it in any of my drug
books. My husband has never heard of it. If it is an anti-viral it can't be
that old but it sounds quite interesting. Kathy

Mr Dugua:
Please look up the original DAN! document written in 1995. You will see
that the original DAN! protocol refers to autoimmunity in autism and
recommends several tests and treatments. DAN! has always been "on-board".
I got in on this thread because someone was interested in going to the DAN!
Conference and Dr. Goldberg did not agree with the approach so they decided
not to go. My point here is that Dr. Goldberg criticizes DAN! and all his
points can be applied right back at him and his approach.
I believe Dr. G's approach has merit. That is why I subscribe to this list.
My daughter was in his care for two years. I have had many hours of phone
conversations with him.
My daughter was on Nizoral for 9 months and Diflucan for 7 months. My
daughter never had a candida problem. None of her testing ever showed a
candida problem. He told me all kids with a dysregulated immune system have
a candida problem. She was on zovirax for 8 months then switched to valtrex
for 9 months. Her HHV6 tires went from 1:120 to 1:640. This is also after
the kutapressin was added. When we started with Dr. G my daughter had
reactions to 2 foods. Her eosinophils were 1.2% When we finished she was
allergic to 12 foods. Her eosinophils were 4.5% She ate everything when we
started with him. When we finished she was eating only a few items.
The SSRIs were a disaster in our case. He kept promising me that when we
got everything adjusted she would be "normal". He kept pushing the "normal"
as opposed to what the DAN! docs could do for her. Her neuroSPECT was one
of the most severe he had ever seen, and this was after being in his care
for 13 months.
This is something else I would like to let you know, Mr. Dugua. Dr.
Goldberg told me that Carmen was one of the more difficult kids he was
working with. He told us to come out to LA for a neuroSPECT in December
1997. He flew out there from Miami. He took a look at her and said she was
a bright eyed kid and a neuroSPECT was not necessary. He told us we should
spend the time seeing Susan Fosnot. We stayed 4 more days to see Dr.
Fosnot. It was a huge expense. I still owe Dr. Fosnot money. Dr. Goldberg
told me she was the best SLP he had seen and she had a different approach.
Dr. Fosnot's approach was no different that the approach we had been taking
since 1995. The idea that what Susan Fosnot does is unique is unfair to the
parents that spend thousands of dollars to fly to LA to see her. I got a
hold of a transcript of a presentation Dr. G. made in North Carolina. In it
he discusses my daughter's visit to see Dr. Fosnot. His spin of what
happened is inaccurate. It was when I read that that I decided he would no
longer be my daughter's physician. I was not impressed with Susan Fosnot,
and Dr. Goldberg used his interpretation of our experience with her to
promote Dr. Fosnot.
He told us he knew he could reach Carmen because she was so bright eyed. He
told us he has never lost a bright eyed kid. I kept asking him if I should
take her to an immunologist. He kept saying not yet. Let me remind you
that I live in Miami - Nancy Klimas is right here. He kept telling me not
yet. Well, if this is an autoimmune disease, why should I wait to go to an
immunologist? I finally took her to an immunologist that works with
autistic kids. He was amazed that I found one. See, this is what kills me.
He feels he is the only one doing this, and it has been going on for years.
He told us the earlier a kid came to him the better. We started with him
when Carmen was 3. She is now 6. While in his care her home program was
directed by Erik Lovaas. The Lovaas Institute dropped us after 18 months
because of lack of progress. My daughter's greatest progress happened in
August 1998 - October 1998 when we took her off valtrex and kutapressin and
started doing what the immunologist recommended.
He kept pointing at her HHV6 tires. Did you know that HHV6 tires can be
elevated not because of HHV6 but because of another infection? He kept
stressing that HHV6 was the culprit. However, when we would look at her
elevated measles and rubella tires he would tell me those numbers don't mean
anything. He treats the HHV6 with high doses of acyclovir. There are no
papers proving acyclovir is effective against HHV6. There are no papers
showing high doses of acyclovir are safe in pediatrics.
And just because Dr. G thinks Kutapressin is safe does not mean that it is.
I believe there is a chance in some of these kids with the hyperactive
immune systems, that injecting a child repeated with pig liver can cause
them to build up antibodies against the medication. My daughter's
eosinophils went up on Kutapressin - steadily. I asked Dr. G if she was
reacting to the kutapressin. His response was to assure me she was not.
How can he assure me she was not.
He would make negative comments about Sudhir Gupta who has been working in
autoimmunity in autism for several years. He would discount all the work by
Andy Wakefield. If you would really see the research Wakefield has done you
would see this is hard to discount.
Look, I don't know who did what at DAN!. I have never heard a DAN! doc say
anything negative about Goldberg, but I have heard Goldberg spit venom about
DAN! Again, I started at this because a parent wanted to learn more by
attending the DAN! and Goldberg did not agree. I get concerned when parent
think Goldberg is the only game in town.
Thanks for your time.
Jo

I suggest people interested in what Dr. Goldberg thinks of DAN, ask him
directly. He has a web site. And he answers questions from anyone.
I am not a spokesperson for Dr. Goldberg. I can tell you though that at the
MAT-NIDS conference last june, MAT made it clear that it was in favor of any
organization that will pursue our goal, i.e. treat this "autism" epidemic as an
auto-immune issue and test existing agents that appear likely to regulate immune
dysfunctions. One MAT exec. said publicly "we are pro DAN, we are pro CAN".
My understanding (I may be wrong) is that when Goldberg told DAN and many
others, YEARS AGO, about his approach, many dismissed him. If DAN is now
on-board with the auto-immune approach, it is great ! We will ask DAN to help us
in our Phase one trials. If you know of any other autism organization who is
interested in MAT-NIDS' approach, let me know. We will gladly talk to them.
PYDugua, a MAT member

My daughter is also in the 40 pound range. I never heard Singh recommend it
by weight. He stated at the Orlando Conference 1 - 2 capsules a day. Jeff
Bradstreet in Florida was recommending 4 capsules a day, and many of his
patients had negative reactions.

How could I go about getting the numbers of autistic spectrum children in
each state?
How could I "estimate" how much it costs to educate them long term, verses
educating them appropriately while they are young, to possibly avoid long
term education? Example, shelling out more money while they are between 3
and 7 for more "one on one" education, and possibly mainstreaming them
earlier because of the appropriate early intervention. VERSES, spending
mediocre funds in generalized programs that are in place now, and having to
do it longer because IT DOESN'T WORK!!!
It bugs me because if the education society would see that spending more now
on APPROPRIATE education, will alleviate the possibility of having to pay
for long term institutional type care later! If they would do the best
with them now, then possibly, just possibly, these kids will be more
independent later!!!
Any ideas???
Post any information you have or can get to me at:
Michelle Guppy
tguppy@...

Dr Lawrence Leightman who served on an FDA investigation board also did not
have a very warm review of her work. I think I saved his note in a file if
you wish to read what he had to say. Marlene

Thanks for sending this. It looks like a wonderful book and I plan to go
right out and get it. thanks again. Margie

Trina,
We got the fatty acid and blood test analysis from Patricia Kane at Body
Bio. As a former biologist, I found several of her recommendations
far-fetched and possibly dangerous. I then showed the reports to two
doctors who also reached the same conclusions. For example, the report
recommended that my son have no calcium supplements even though his calcium
levels were perfect. A calcium deficit can lead to rickets or worse. Bill
Shaw knows of kids gouging their eyes because of lack of calcium. The
report also recommended my son be given up-to 5 capsules of sphingolin/day.
Vijendra Singh, the expert on MBP anitbodies, was horrified and said that
1/2 capsule/day should be the limit given my son weighs 40 lbs.
There may be some good info in the reports but it gets tarnished by the bad
info.
FWIW
Jeff

What is it specifically about DAN that does not jive with Dr Goldberg.
Thank you

He calls it Floorplay. you can get the book at your public library it is
called "the Child with Special Needs" . If you want to buy it, best to
compare prices at www.bestbookbuys.com ISBN#0201407264 , although I got my
copy at www.bookcloseouts.com for $7 hardbound, it is currently sold out.
www.hamiltonbook.com is also inexpensive but do not take credit cards over
the net. Mail a check and first come first served.
Marlene

For us, ABA didnt work either. What did was a combination of medical with Dr.
Goldberg, Greenspan to reach the emotional side of the child (which ABA
doesnt try to do), and the Koegel's for the speech. When we stopped ABA, and
started the other, is when our child started to develop as a real person,
instead of just learning "things".
I know it is rewarding to have your child learn anything, but "facts" are not
what you want to teach. You want them to learn other things that will allow
them to learn on their own in the future. That's what Greenspan and Koegel
both teach.
Good luck to everyone-one thing for sure is even though we may disagree on
the approach, we all have the best intentions

Whats the Greenspan approach to learning?
--
Neil

We are from Alberta, Canada, and are planning a visit to Dr. Goldberg.
We would like to get the Neurospect scan done while we are there. I
need to know if any other families from Canada have done this and found
a way to have insurance at least share in the cost of both the scan and
consultations.
We have our regular provincial health care as well as some extended
health care. I have found a doctor that has shown some interest in the
NIDS theory and will be discussing this with him as well.
Any insight and experience with this would be greatly appreciated,
please feel free to e-mail me.
Thanks,
Sheree

J said
re: but luckily she moved.
I don't understand that statement. IMO
Anything & everything is worth a try (even ABA),
especially if nothing else seems to work
(for whatever reason)
Patterning responses is a major component of ABA
The earilier one starts the automation/practice/brain training
the easier it gets accepted.
We've tried pattern crawling, upside down swinging,
vestibular exercise etc.
just in case it did some good.
I assume thats what you're talking about.
For us ABA didn't work - (or we failed ABA)
late diagnosis or failure of Dr to label child
(he didn't want to tell us, we in the end told him)
didn't help (delay in starting program to 6yo)
Unable to get enough therapists, trained or experienced enough.
(hard if you live in a small centre)
Soon enough to impliment program efficiently/sufficiently.
8-10 hours instead of 40+ hours per week.
Compliance was never really achieved,
Drills only succeeded in
turning him off, bored with repetition etc,
reduced his motivation for doing things,
once introduced to drill format.
He really objected to doing anything
more than once (unless he wanted to)
Lost his ability to spell words,
for wants spontaneously
once introduced as drill,
reverted to learning/doing things only under protest.
(although he did them)
A total family life-commitment helps any program.
Really he was learning things, in spite of ABA intervention,
and mainly by doing himself, without intervention.
Really self motivation and his obcessions
is what really what teaches him now.
(With a little planned guidance)
To get speech therapy, I had to get someone from
Australia, (coming end of month)
the resources haven't been available locally.
I know that age of 8 is not the ideal time to start,
for a non-vocal Autistic boy.
But progress is starting to come
at an increased rate.
--
Neil

Hi all,
Thanks for all of the responses about PT in school. I have taken action and
plan to see this through. But, I do have another question. I found out
that the PT who evaluated my son last week at school spent a grand total of
15 minutes or so doing the eval. How long should a thorough PT eval take?
Thanks so much,
Trina

Hi all,
My son is a Goldberg pt. Goldberg has made it clear that he does not jive
with the DAN docs. He has a different opinion. I trust him. I was
planning to attend the DAN conference, but have since changed my mind, as he
does not agree with what all they are saying. Anyone else in the same boat?
Also, I want to implement some of Dr. Patricia Kane's ideas, although I have
not taken my son to see her. I have just read some of her stuff. Has any
Goldberg pts also tried the Kane approach with success??
Trina

Dear Friends,
I just wanted to take a few minutes to announce that Victoria Beck's book,
entitled "Confronting Autism: The Aurora on the Dark Side of Venus" A
Practical Guide to Hope, Knowledge and Empowerment, has been completed and
will be available soon.
Victoria's book takes a critical look at the autism community today,
including the sometimes debilitating cycle of hopelessness it generates,
which we have all experienced in our plight to help our children. It is a
discussion about the positive transformation that can take place for parents
and their ill children when knowledge, wisdom, and truth in science are
sought collectively by those of us whom comprise the body of the autism
community. Victoria's book presents a philosophical and pragmatic look at
the plan that she and Gary have used to break the cycle of hopelessness for
their child. It comprises the eight steps Gary and Victoria designed and
implemented to empower themselves, which eventually led to the discovery of
secretin as a treatment for autism. "Confronting Autism......" is not
about any one particular treatment or approach for every autistic child, but
it is
most certainly about working through the enormous and overwhelming
responsibilities of life with autism. This book challenges the myths about
autism that have limited biomedical research and treatment for decades and
challenges the reader to change the entire way they look at autism.
"Confronting Autism....." is a book of hope, knowledge and empowerment and a
call to truth and progress in the research and establishment of treatments
for autism.
I had the great pleasure and privilege of previewing "Confronting
Autism....." and I could not put it down. This is the book that you will
want to give to every friend and stranger with a child newly diagnosed on the
autistic spectrum. It is the book that you will keep and use, as it is one
of the few books on autism that actually gives us tools that we can each
integrate into our lives, helping us to stay focused on our mission to help
our ill child(ren); keeping our families intact. It is a book that reminds
us that our love for our children and our commitment to our families entitle
us to be heard by the medical community. Our tireless efforts to heal our
children are worth something, and Victoria reminds us of this in her
wonderful book.
"Confronting Autism: The Aurora on the Dark Side of Venus" will be
available October 1st, and will be previewed at the DAN Conference. The
price is $18.00 plus $3.00 shipping and handling. Advance orders (received
before October 1st) will be sold for a discounted price of $15.00 plus
shipping and handling ($4.00 for shipping international orders). Anyone
wishing to order can fax or email their Visa or MasterCard number, along with
the expiration date on the card to vbeck@... , or you can send a
check to:
New Destiny Educational Products
188 Route 101
The Great American Office
Suite 314
Bedford, NH 03110
FAX (603) 471-6362
Orders will be shipped in the beginning of October.
It will come as no surprise to those of you that know Gary and Victoria,
that they will be sharing a portion of all proceeds from the book with various
autism foundations and organizations.
Kind regards,
Ricci
P.S. Please feel free to forward this info to your friends in the autism
community, as well as other lists.

I'm going to be traveling for several weeks and will resume list
participation after the DAN! in Cherry Hills.
Meanwhile, I'll still receive email via <aspergerian@...
although I won't be able to access the account often while traveling.
Teresa

Why geek geniuses lack social graces
Norman Doidge On Human Nature
National Post
The Massachusetts Institute of Technology, perhaps the finest post-graduate
school for mathematical and computer minds in the world, has a course that
teaches its entering geniuses the most basic social skills -- often at a
rudimentary level. MIT students wittily dub it "charm school." Many of the
best and the brightest minds in science, math and computers are often
physically and socially clumsy, and they know it. They've been teased
mercilessly for being "klutzes" of one sort or another most of their lives.
Ten years ago, Dr. David Forrest, a psychoanalyst who had studied
schizophrenics, turned his research attention to those who are designated
"nerds," "geeks" and "space-cadets," to understand why so many with superior
mental abilities are uncoordinated, come with plastic pen packs in smudged
shirt pockets, have an often whiny voice with a mechanical timbre, and a
sudden loud, peculiar, foghorn laugh and snort. He wondered why a "nerd"
stoops to take such a close look at what interests him, sniffing his food if
it smells funny, placing his nose right in it, "locking on" with his eyes.
Forrest wondered if there was some special relationship between certain kinds
of intelligence and the absence of physical and social graces.
Now there's a book, Shadow Syndromes, that begins to answer Forrest's
questions, and many more. Shadow Syndromes, by Harvard psychiatrist John
Ratey (co-authored with Catherine Johnson), sets off a cascade of "aha"
reactions that significantly alter one's conception of oneself and others.
It's only in the last few decades that we have learned that most of the major
mental disorders have "shadow syndromes" or milder versions. Ratey's and
Johnson's book brilliantly describes numerous shadow syndromes -- masked
depressions (that show up in those who are always "being difficult"), less
severe manias, obsessive-compulsive disorders, rages, and attention deficits,
all of which influence our work and love lives.
For instance, Shadow Syndromes builds a powerful case that many of us "nerds"
are at the mildest end of a spectrum of autistic disorders. Till recently,
autism was believed to exist only in a severe form. Autistic kids have
profound difficulty connecting with people, and always appear "out of it."
But many have neurological difficulties as well. Autistic infants, when
startled, can't turn off the startle response. They are hypersensitive, and
are well-known to spend hours rocking or moving their hands rhythmically, to
soothe themselves.
But 10 years ago, Edward Ritvo of UCLA, in an attempt to study autistic
children, went around Utah, and spoke to the parents of every known autistic
child in the state. He discovered that a number of the parents were mildly
autistic themselves. Some were socially isolated, had autistic ways of
walking (were "odd ducks") and spent long hours rocking.
Suddenly, it seemed that along with some well-known physical causes, there
was likely a genetic component to autism. As well, the psychoanalytic
observation that some autistic kids had parents who could not connect with
them seemed not so far-fetched: Some of these parents were autistic.
Mildly autistic people have a characteristic, Mr. Spock-like way of speaking
-- overly formal, with little emotion. They have trouble understanding the
meaning of tone changes in speech and can't easily make small talk. They
can't read people. One of Dr. Ratey's patients, Aaron, a socially awkward
computer programmer and a 34-year-old virgin, who might have passed for
neurotic, couldn't empathize at all. Never having known what empathy was,
when others understood him, he felt they had invaded his mind. He showed the
signs of physical awkwardness and couldn't dance unless someone physically
guided each step. (Many autistic kids can't skip, or clap in time to music,
and have problems with rhythm and balance.)
Co-ordination of movement and balance are known to be regulated by the part
of the brain called the cerebellum. We now know, from brain scan studies by
Eric Courchesne, that the cerebellum is significantly underdeveloped in
autism. It has also recently been shown, to the surprise of many, that the
cerebellum co-ordinates both physical movement and the shifting of attention.
This finding is momentous. It led Courchesne to ask, "What would happen to
the infant who comes into the world with cerebellar damage, and a clumsy
attentional apparatus?" Courchesne showed that it took these kids six seconds
to shift attention, and hypothesized that this was not fast enough to make
out the fleeting sweeps of emotional expression and social information. A
smile erupts and disappears in a moment on a mother's face. The child who
cannot catch it, or who can't shift his attention quickly enough to see what
the mother is smiling at, feels "out of it." At best, he catches the shadow
of her smile. Thus, he cannot "tune in" to people, or share in a moment of
joy. Later on, he may learn to tediously calculate what others are feeling,
but that is hard work, indeed.
This cerebellar slowness may also explain some of the intellectual feats of
the mildly autistic "computer nerds" that are now reorganizing the planet.
(Bill Gates, according to Shadow Syndromes, is reported to rock himself,
spend hours on the trampoline, not make eye contact, and have trouble making
social conversation.) It is not just that computers provide an alternative to
direct contact with people. Many mildly autistic people are right-brain
types, often with great visual-spatial skills. Silicon Valley is filled with
shy, awkward geniuses, who are able to be obsessed with certain interests or
ideas; never letting go of them, they are able to make connections and
discoveries the rest of us cannot.
But more importantly, because attention shifting is slowed, autistic people
experience life as a series of freeze frames. Thus, they have trouble
perceiving the whole. But they are far better than "normal" people at
perceiving the parts. Some autistic artists can reproduce, in perfect detail,
a building only seen once; the "normal" artist starts from a sketch of the
whole, then fills the details in. Autistic people can see things out of
context -- the starting point for invention.
Ratey and Johnson state that neuroscience "is proving Freud right: probably
none of us is 'normal' -- normal in the sense of possessing a brain in which
every part and system works as well as every other part and system -- and all
functions lie well within an optimal range." In Shadow Syndromes you may just
recognize your own "noisy" brain and the way it, for evolutionary reasons,
biases how you process information. It's getting late in 1999, so it's not
too early to recommend Shadow Syndromes as one of the most fascinating books
on psychiatry, for the general reader, of the decade.

We live in El Paso Tx, here most of the schools are using TEACCH for
autistic children, but is not helping most of our kids. I have two
autistic sons (7 & 5 yo), they are attending school (special ed), and we
are doing ABA at home (15 hrs/week), they are learning more from ABA
than from TEACCH. I have been trying to see if Medicaid would pay for
ABA, but nothing, there is no way. Financially is imposible for us to
give our kids more ABA hours therapy. Applied Behavior Analysis employs
methods based on scientific principles of behavior.
I hope somebody can help us, our children need ABA !!!!!
Thank you
Martha F. Negrete
mnegrete@...

I have a daughter, 12 years old with PDD-NOS, ADD, ?Aspergers, diagnosed at
age 3. How can I find out where Dr G.is located? Thanks

Thank you to all who sent me stuff for my "term paper" report!!! ANY
information or resources that you can give me about how ABA is necessary in
the schools to help teach our kids would be great!!! I am tying to hunt up
any and all resources to document that. Books, papers, legal proceedings,
therapist recommendations, etc. ANYTHING that shows how that is needed to
help teach Autistic children.
I want to make as big a report as I can backing up our need for more
appropriate teaching methods for our kids. After my meeting with the
school district, I plan to send my report to all state agencies on
education. So, it doesn't matter from what state you are from, this is for
the U.S., all schools !!!!!
IF YOUR SCHOOL ALREADY DOES ABA, OR HOME ABA FOR YOU, PLEASE SEND ME THE
NAME OF THE SCHOOL AND HOW YOUR PROGRAM IS SET UP!!!!
THANK YOU ALL FOR YOUR HELP!!
MICHELLE GUPPY
tguppy@...

Cow's milk is high enough in sodium and protein that you can damage a babies
kidneys, kill them in fact. Cows milk is excellent for calves. Anybody ever
read "Don't Drink Your milk" a fairly old book by a Med. Prof. Dr. Osofsky I
think from Hopkins Medical School. Kathy R

With all the possible problems with dairy, heres another. In CFIDS, some of the
recent research has been looking at the blood pressure/volume problems that seem
to be of of the 1000+ abnormalities. I was reading some of the information on
the John Hopkins studies. One of their recommendations is to avoid dairy, since
it seems to worsen this problem.
Cheryl

Please e-mail me at JOSKAT95@.... Have some ideas for fundraising but
need to know size of organization, number of volunteers etc. KathyR

You want to heal autism ? Medicine For Autism Today has a plan...
We need money to fund "phase one" trials of existing agents that are likely to
help regulate the immune system of our kids. This fund raising project is real.
It is not a PR campaign to raise the public awareness. It is real applied
science. It will happen if you help.
Contact MAT with your ideas to raise funds. We have various schemes already
going and we found a donor for a 50,000 dollars matching contribution. Running
around in circles and trying to find the right diet is not enough. Thanks to the
medical experts on the NIDS board, MAT is closer to finding a real solution.
Help us.

Does anyone know what kind of imaging Dr. Eden at Georgetown is doing to
assess the effects of FastForword on the brain?
Kate

re (http://www.neuroimmunedr.com/present3/tsld035.htm)
slide show of autism and immune connections
Immune abnormalities reported:
a.. Changes in T cells (& T cell function)
a.. CD4 / CD8 - increased / decreased
b.. Low (and elevated) NK cells
c.. B cells - increased / decreased
d.. Increased DR+ T cells
e.. Increased Interleukin 2 Receptors
a.. Decreased Mitogen response
a.. Altered Delayed hypersensitivity
a.. Antibodies to serotonin receptors
a.. Antibodies to neuro elements
a..
--
Immunodepression (http://solsticepoint.com/imunodep.htm)
For an underactive immune system-
A compromised state in which the body's antigenic response does not
respond to appropriate cellular immune reaction.
It may also be a result of a loss of immunoglobulins or an abnormality
of the B or T cell lymphocytes.
Contains: Aloe Vera, Echinacea, Garlic,
Panax Ginseng, Silymarin, Siberian Ginseng, Zinc
--
My Questions:-
What is the Immune System?
and How can we tell is too weak
or over active?
What obviously shows,
assuming no special blood tests have been done yet.
--
Neil

Hello Folks !
Those of you who have sold bulbs to raise funds for MAT can now send me back
their order sheets and their checks made to MAT: my address: 4208 Dresden
Street, Kensington, MD 20895
Thank you for your help !
Lisa
.

At the risk of sounding dim and not wishing to offend, can you kindly
explain what the implications of this information is?
Thanks.
Franco
Benedict's Dad

D said
(besides using Epsom salts as a calming/relaxing bath)
Maybe thats where a problem lies with Autistics
the bacteria aren't there, perhaps
or the normal mechanism that happens doesn't or can't.
Perhaps this is what they refer to as
'the sulphation deficit' prob ???
Perhaps thinking about it is a waste of time etc
Perhaps we should just revert to trial & error.
If nothing happens we've learnt nothing much about our child
(except to try something else)
Even if there's a negative reaction that would suggest a lot.
If there's a positive reaction - super!
--
Neil.

Polly,
You mentioned that Armour has corn sugar in it. That gets me a little
concerned because my son is off corn and on a low sugar diet. How does one
find out about the contents of a prescription medicine including additives
like corn and sugar? Would the PDR contain this kind of info?
Also, in this case if I wanted to get a different formulation of Armour am I
out of luck?
sanjay
stikku@...

Hi,
We tried every single one. Even specially compounded beef based and then
pork based. When he was started on thyroid he was not showing any thyroid
antibodies. They developed later. They seem to rise and fall depending on
his infections. His low
a.m. temp. stayed low. One concern regarding thyroid replacement, from what
I've read,is they affect adrenal problems. Problems with the adrenals are
mentioned alot in the CFIDS literature. This illness can affect every
system in the body. While correcting
one area there is the possibility of worsening another area. So when doing
anything it
seems important that the doctor is aware of all the areas of this illness.
Cheryl

Hi Maura,
No, my daughter did not take the TRH test. Her diagnosis was based on her
symptoms only. Taking the TRH test is a waste of your time and effort. It
probably isn't going to show the problem. You just have to get up the
courage to say no to the mainstream doctors and their requirement to have a
labratory test show the thyroid problem. You must believe the alternative
doctors when they say that the problem will not show up on the labratory
tests. You can get a doctor to do thyroid supplementation without the
tests. But you need the political backing and the expertise from the Barnes
Foundation to find such a doctor. Doctors can get in trouble if they give
thyroid based only on symptoms. Taking a blood test first, even if they
discount the results, gives them some safety from prosecution by the medical
boards. Any doctor that gives your child thyroid is doing you a big favor,
because they are more concerned about your child than covering their behind.
Polly

Hi guys. I'm out of here for a while. Nasty storm coming. If it turns I
will see you Wednesday.
Jo

I don't believe this is available in the states yet......
<< Saturday September 11, 12:20 pm Eastern Time
Company Press Release
Helix BioPharma Corp.: Isoprinosine Successful In Treating Chronic Fatigue
AURORA, ONTARIO--(BW HealthWire)--Sept. 11, 1999--(TSE:HBP. - news)
Patients
suffering from Chronic Fatigue Syndrome (``CFS'') who were treated with
Isoprinosine(r) showed a significant reduction of their clinical symptoms
and a
significant improvement in their immune system function.
Isoprinosine(r) is an anti-viral and immune modulating drug. It is approved
in
Canada and in many other countries for the treatment of certain viral
infections and disorders of the immune system.
Renowned CFS specialist, Dr. Byron Hyde of the Ottawa-based Nightingale
Foundation, presented the results of his seven-month placebo controlled
clinical study at a conference in Brussels today.
The clinical study showed that 50 percent of the 16 patients in this study
who were treated with Isoprinosine(r) demonstrated considerable improvement
of
the symptoms as well as increased immune function, including immune memory
for common infectious agents. One patient even improved to the point of
being
able to return to work. Furthermore, there was no worsening of symptoms in
any of the patients treated with Isoprinosine(r).
``Our study of Isoprinosine(r) is a milestone in the treatment of CFS. I
believe that this medication, with its proven safety record, holds the
promise of an improvement in the quality of life for some CFS patients,''
stated Dr. Hyde.
Isoprinosine(r) is distributed in Canada exclusively by Helix's subsidiary,
Rivex Pharma Inc.
Approximately 500,000 people in North America are believed to suffer from
Chronic Fatigue Syndrome, many of whom are unable to work due to the
debilitating nature of the disorder. Patients typically exhibit impaired
cognitive ability, profound fatigue and disregulation of the immune system.
Isoprinosine(r) is a registered trademark of Newport Pharmaceuticals Ltd.

Dear Polly:
Thank you for this information. I have suspected thyroid problems and we have
gotten the regular tests (which came back normal). I was pushing for the TRH
test since I can't get a dr to try thyroid supplementation empircically.
Sounds like this is what you tried and it was successful. At least I got one
Dr to take an interest in the more sensitive TRH test.
Maura
In a message dated 99-09-10 14:47:02 EDT, you write:
<< From: "Dale Goudey" <goudey@...
Very fast growth can imply a need or a borderline need for thyroid. No
growth is an indication of not enough thyroid. Poor muscle tone is a
classic symptom of low thyroid.
My daughter has always been over the 95% range. (She doesn't have autism.)
She started to mature early (precocious puberty). I took her to a
mainstream endocrinologist who confirmed the precocious puberty and the high
estrogen. But when I asked if she needed some thyroid, he said absolutely
not! She is tall. But I then asked the Barne's Foundation. They said
that she could be tall and need thyroid. That she had enough thyroid to
grow, but not enough to control the growth. This will not show up in a
blood or urine test in a child. You have to go by symptoms. When she got
the thyroid, her depression lifted within a month, and her hair started to
grow faster, her ability to focus improved, and she went from the bottom of
her class to an honor roll student.
Barnes Foundation phone number (203) 261-2101
Polly

If an autism-spectrum child's immune panel has revealed a highly
atypical level of pertussis antibodies, Schlapfer et al may be of
interest.
The following quotes are from an article: by four Swiss researchers
(1):
Diagnosis of Bordetella pertussis infection is not always straight
forward. The conventional laboratory methods consist of culture and
serological testing. Diagnosis by culture is more specific but shows
low sensitivity, whereas serological testing for specific antibodies
is more sensitive but lacks high specificity... Establishing a
clinical diagnosis is becoming more difficult, because an increasing
number of vaccinated and/or adult patients show mild or atypical
symptoms. Hence, many infections remain undetected and may be a
source for spread of Bordetella pertussis...
Information about the vaccination status was obtained for 146
patients. Table 2 shows the vaccination status and symptoms of
patients compared with laboratory data: 26% (5/19) of culture
confirmed cases and 50% (39/78) of those detected exclusively by PCR
had completed vaccination with three or more diptherial, tetanus and
pertussis vaccine (DPT)... Patients in this group with mild or
atypical symtpoms (59%; 23/39) may, at least partly, be infected with
Bordetella pertussis bacteria in the avirulent state...
In the avirulent phase bacteria loose the whole set of virulence
determinants, including adhesion factors and toxins, which are
reponsible for the clinical symptoms...
The switch from the virulent to the avirulent phase may occur during
an immune response to infection with Bordetella pertussis or to
vaccination. Therefore, the increasing evidence of frequent pertussis
infections in adults with mild or atypical symptoms... may be
explained by changing epidemiological behaviour of Bordetella
pertussis in response to vaccination...
In our study 47% (83/177) of patients tested were younger than two
years. Fifty-three percent (44/83) of these were positive in the PCR,
but only 7% (6/83) were positive on culture.
1. Eur J Clin Microbiol Infect Dis 1993 Jun;12(6):459-63
Use of the polymerase chain reaction to detect Bordetella
pertussis in patients with mild or atypical symptoms of
infection.
Schlapfer G, Senn HP, Berger R, Just M
University Children's Hospital, University of Basel, Switzerland.
Nasopharyngeal aspirates and nasopharyngeal swabs from 177 children
exhibiting mild to severe clinical symptoms of whooping cough were
tested by the polymerase chain reaction (PCR) and culture for the
presence of Bordetella pertussis. In the PCR analysis amplifications
of samples prepared with and without DNA extraction were compared.
In 26% of samples prepared without DNA extraction, the PCR was found
to be inhibited, whereas no inhibition was detected after DNA
extraction. Twelve percent (21/177) of the samples were positive in
both culture and the PCR, and an additional 49% (87/177) of the
samples were positive exclusively in the PCR.
Thirty-eight percent (8/21) of culture-positive patients and 63%
(55/87) of the patients in whom infection was detected only by PCR
had mild or atypical clinical symptoms. Of these groups 26% (5/19)
and 50% (39/78), respectively, had been fully vaccinated with three
or more doses of
diphtheria, tetanus and pertussis vaccine.
PMID: 8359168, UI: 93365463

Neil,
Yes, some children may be impacted in utero by mercury, but I bet a lot more
have been impacted after birth from vaccines. When the thimerosol news came
out I reviewed my son' vaccine history and all three of his fist vaccines,
DPT, HIB, and hepatitis contained thimersol for a grand total of 62.5 mcg
of mercury which he received at 2,4,&6 months of age. This dose well
exceeded EPA's maximum recommended daily exposure of 0.1mcg per kg. per day.
I would be very interested in finding out more about sulfur sensitivity
from mercury poisoning and the enzyme that converts cysteine into taurine
and the sulfur sensitivity diet. There are so many pieces to this Autism
puzzle, but they are starting to fit together. Thanks for the information.
Lyn

Neil,
I'd like to read the whole article from which you are quoting. Which article
is this, and where can I find it. The list of "sulfur" foods is the same
one that people with sulfur sensitivity due to mercury poisoning are
avoiding. Their sensitivity is due to a lack of the enzyme that converts
cysteine into taurine. (Then taurine converts to sulfate.) Since mercury
crosses the placenta, just how many of these kids are compromised by mercury
poisoning before they are even born?
Polly

We are taking our 5yr. old to Cleveland Clinic in Cleveland, Ohio. This is his
first visit to a specialist, outside of a clinical psychologist who simply gave
us the dx PDD/NOS but no other help or direction. Has anyone ever gone to the
Clinic with an Autistic child looking for answers? Just wondering if it is
going to be worth the wait. Thanks for any information. Lisa Hughes

Familial clustering of autoimmune disorders and evaluation of medical risk
factors in autism.
Comi AM, Zimmerman AW, Frye VH, Law PA, Peeden JN
J Child Neurol 1999 Jun;14(6):388-94
Johns Hopkins Hospital, Division of Pediatric Neurology, Baltimore, MD
21212, USA. acomimd@...
Autism is an age-dependent neurologic disorder that is often associated with
autoimmune disorders in the patients' relatives. To evaluate the frequency
of autoimmune disorders, as well as various prenatal and postnatal events in
autism, we surveyed the families of 61 autistic patients and 46 healthy
controls using questionnaires. The mean number of autoimmune disorders was
greater in families with autism; 46% had two or more members with autoimmune
disorders. As the number of family members with autoimmune disorders
increased from one to three, the risk of autism was greater, with an odds
ratio that increased from 1.9 to 5.5, respectively. In mothers and
first-degree relatives of autistic children, there were more autoimmune
disorders (16% and 21%) as compared to controls (2% and 4%), with odds
ratios of 8.8 and 6.0, respectively. The most common autoimmune disorders in
both groups were type 1 diabetes, adult rheumatoid arthritis,
hypothyroidism, and systemic lupus erythematosus. Forty-six percent of the
autism group reported having relatives with rheumatoid diseases, as compared
to 26% of the controls. Prenatal maternal urinary tract, upper respiratory,
and vaginal infections; asphyxia; prematurity, and seizures were more common
in the autistic group, although the differences were not significant.
Thirty-nine percent of the controls, but only 11% of the autistic, group,
reported allergies. An increased number of autoimmune disorders suggests
that in some families with autism, immune dysfunction could interact with
various environmental factors to play a role in autism pathogenesis.
PMID: 10385847, UI: 99313625

.. many children reacting to many foods, in particular, wheat, cow's
milk, oranges, tomatoes, chocolate, bananas, cheese. These foods and
many
others contain amines and phenolic compounds. Both of these are broken
down
by a substance called sulphate which is produced in the body from
sulphur-containing amino acids. From the tests we have run, we have
found
that these children do not have either enough sulphate, or the enzyme
that
uses this, called phenol- sulphotransferase-P. This means that they
will be
unable to get rid of amines and phenolic compounds once they no longer
have
any use for them. These then stay in their body and may cause adverse
effects, even in the brain. We are unable to say exactly which foods
cause a
problem in each child, but the above list is a guideline. You need to
observe
your child and see which foods cause the worst problem. The foods then
need
to be cut down or removed
.....you should avoid foods which contain
sulphur, ie. garlic, onion, cabbage, egg yolk, and foods which are
preserved
with sulphur. Avoid sodium metabisulphite (a preservative) and any
foods which
contain sulphites, as some children have a deficiency of sulphite
oxidase,
which makes sulphites safe in the body. Foods which are naturally
highly
coloured should be avoided, as it is the colour and the aroma which
contain
the phenolics, ie. oranges, tomatoes, red grapes, red apple skins, etc.
--
via Neil S. Clark

Neil,
Your post describes my son exactly! I've used MSM briefly, but really saw
no improvement. Although I have heard of PST deficiency, I have not heard
of anyone who actually is testing for the disorder. Does anyone have
information about testing for PST deficiency?

Dear all,
I heard Dr. Goldberg speak on Tuesday night and I was very impressed
with his research concerning NIDS. My son has the type of "acquired
or regressive autism" that he described. I would like to have my son
evaluated for possible treatment with meds, but I belong to an HMO.
He has already undergone an EEG, MRI, blood counts, genetic screening
and various other tests, but they have all came back normal. Should I
ask his pediatrician for a referral to an immunologist?
If anyone belongs to Kaiser Permanente in Southern California and is
trying to get this type of treatment for their child, I would like to
hear from them. Any other suggestions would be appreciated as well.
Tiff

ENZYME AND SULPHUR OXIDATION DEFICIENCIES IN AUTISTIC CHILDREN WITH
KNOWNFOOD/CHEMICAL INTOLERANCES
B. A. O'Reilly*. Director, Allergy-induced Autism Support and Research
Network(UK), 3 Palmera Avenue, Calcot, Reading. Berkshire, RG3 7DZ,
United
Kingdom, and Dr R.H. Waring,Department of Biochemistry, Birmingham
University, Edgbaston, Birmingham, B152TT, UnitedKingdom
We are currently carrying out studies to determine whether children with
autism and known food/chemical intolerances have a deficiency of
phenol-sulphotransferase-Penzyme and/or a low capacity to oxidise
sulphur
compounds. On the results obtained so far,a ll 18 children have a low
enzyme level, and some have a low capacity to oxidise sulphur compounds.
This enzyme metabolises phenols and amines. Therefore with a reduced
level, these children will be unable to fully metabolise foods and
chemicals which contain phenols. Many drugs are metabolized on this
pathway, and these children do have adverse reactions to various
medications. Courses of antibiotics result in a worsening of autistic
behaviour, sedatives have the reverse effect, and anaesthesia is known
to
cause difficulties. Amines are also metabolized with this enzyme, and a
deficiency would cause a build-up of substances such as serotonin,
dopamine
and noradrenaline. If, as a result of this build-up, serotonin,
dopamine,noradrenaline, and other body chemicals are being further
metabolised this will produce substances similar tophytotoxins, for
example. This could happen due to phenolics competing for and
inhibiting
amine oxidase. Inert neurotransmitters could also be manufactured, such
as
octopamine, which is the phenol analogue of noradrenaline, as well as
substances similar in structure to morphine or LSD, which may well
explain
the bizarre behaviour seen in autism. The majority of children in this
category - autistic-like children who were perfectly normal up until a
certain age (mainly between 18 months - two years, although this varies)
-
have allergy to or intolerance of many foods/chemicals, the main
offenders
being wheat, cow's milk and salicylates. Their family histories show
asthma, eczema, migraine, hayfever, plus many other allergy-related
conditions. Their siblings display learning difficulties, dyslexia,
etc.
and the affected children have a strong tendency towards being
left-handed
or ambidextrous, this mostly occurring when they transfer from their
normal
state to their autistic-like state. Many metabolic processes can be
disturbed by phenolic compounds, and so cause many physical problems
which
are only slightly noticeable in childhood, such as excessive thirst,
night
sweats, facial flushing,increased pulse rate,abdominal disturbances,
etc,
but nevertheless are present, but not investigated as a part of their
mental disturbance. The children display cravings for the very
substances
which do them damage, which are not only contained in foods, but also in
the non-food items they mouth, suck,chew and ingest, eg. plastics,
rubber,
paper, metal, cement, soap, perfume,food colourings,and at the onset of
autism, their diet changes completely. They become picky eaters, only
eating very few foods, and start to eat non-foods to great excess. The
results so far have proved that there is a metabolic disturbance in
these
children, and we now hope to carry out further studies on more children
and
different biochemical pathways to determine whether there may be other
factors contributing to this condition.
--
via Neil S. Clark

Very fast growth can imply a need or a borderline need for thyroid. No
growth is an indication of not enough thyroid. Poor muscle tone is a
classic symptom of low thyroid.
My daughter has always been over the 95% range. (She doesn't have autism.)
She started to mature early (precocious puberty). I took her to a
mainstream endocrinologist who confirmed the precocious puberty and the high
estrogen. But when I asked if she needed some thyroid, he said absolutely
not! She is tall. But I then asked the Barne's Foundation. They said
that she could be tall and need thyroid. That she had enough thyroid to
grow, but not enough to control the growth. This will not show up in a
blood or urine test in a child. You have to go by symptoms. When she got
the thyroid, her depression lifted within a month, and her hair started to
grow faster, her ability to focus improved, and she went from the bottom of
her class to an honor roll student.
Barnes Foundation phone number (203) 261-2101
Polly

Clonidine is another name for catapres. Margie

Well, this is probably going to sound crazy... When my son was 2 - 3 years
old, giving him baths in warm water and Epsom Salts would calm him down, and
he'd use his words more. I had read it was a way to get Magnesium into the
kids, so I figured it was worth it. I swore by it, and I think I got the
idea from the autism listserv from other parents doing the same thing. It's
so hard to get the supplements into them orally, so I was also rubbing oils
(essential fatty acids) into his skin rather than trying to figure out how
to get him to take it. He had oral/motor problems anyway at that point, and
was in feeding therapy - and if nothing else, he enjoyed the sensory feeling
of a massage with the oil while hopefully getting some nutritional value
from it as it went into his skin.

Ms Adams,
I live in Western Louisiana and have a seven year old autistic daughter.
The doctors here are not equipped to treat autistic children whether one
is trying to live with it or find a fix. After several months of
searching for a doctor anywhere who was treating children like my
daughter, I took her to California to Dr. Goldberg this summer.
Her initial blood work indicated a candidas infection. Dr. Goldberg
prescribed an anti fungal. In one week, she was toilet trained. looking
us in the eye and speaking in complete sentences. She did get a bit
undisciplined; but who cares? Now she is sleeping through the night
without medication, playing with her brothers and sisters and has
stopped banging her head. All this occurred before we started the second
phase of treatment which is the low dose SSRI.
Taking my daughter to Dr. Goldberg was the best thing I have ever done
for her. I regret waiting.
By the way, my insurance company fights every step of the way.
Randy Perez

never obviously ill.
You can still be ill and not show symptoms,
inability to develop muscle tone is that not a problem?
ONE can have cancer years before symptoms show.
--
Neil

If MSM seems to help children with their PST deficiency / sulfation deficit,
why wouldn't sulfates themselves be of value too? e.g. Magnesium sulfate
from Epsom salts? Anyone know about this?
Polly
many autistics
is responsible for cleaning
works within the liver to help remove other
unusual odor at night or on their bed clothes, or if they sweat
this. It did in
stores.)

In a message dated 99-09-09 09:47:35 EDT, you write:
<< From: Plant <aplant@...
My son had good tone for the first four years of his life. Then after a
paired
infection roseola (HHV6) and immunizations (DTP, OPV and MMR) he lost it.
Now his
tone is very low. He also stopped growing for nearly a year. In 1 1/2
years he went
from above the 95th to below the 50th percentile for height. OT has helped
his tone
some, but every time he has a strong viral infection we are back to square
one.
Allison
Allison: My son still has decent tone, but has definitely fallen off the
growth charts. He went from 95, to 75 and now he is in the 5-10% range. I
have dragged him from DR to Dr about this and none of them seem to think this
is a problem! My 2 yr old is as big as Jonty is (Jonty will be 5 next
month). He hasn't grown out of shoes or clothes for 2 yrs now.
He stopped growing when he got sick in the spring of 97. He ended up losing 4
out of 32 lbs and only gained it back 1.5 yrs later after secretin. He ended
up getting his tonsils/adenoids out that Fall and finally we stopped the
endless cycle of obvious UR viral illnesses, but he still didn't grow til he
had secretin in 11/98. I also know he has viral/immune problems and
reactions to vaccines. He also had roseola and now has elevated HHV6,
measles, diptheria, tetanus titers and no antibodies show for the varicella
and HepB vaccinations he has gotten.
In sum, I do think that the paired infections/immunizations could play a role
in your child's change in tone and growth.
Maura

You may have kutapressin confused with Catapres (clonidine?). Catapres is
used as a patch for more of the hyperactive symptoms I believe. Kutapressin
(per Dr. Goldberg) has anti viral and immune modulating properties. I use it
for CFIDS and my son for ADD/Speech disorder. It is taken as an IM shot.

So happy for you and him, Trina!

Here are a couple of links re: Spec Ed. http://www.wrightslaw.com
http://www.kidsource.com/NICHCY/index.html
Hope that helps.

I don't know about the prescription one, but the times my son has gotten an
IV the nurses have put a patch on his skin for 30 minutes before the needle
stick. Maybe ask about that too.
Here's a story - my son needed a blood draw for Fragile X checking - so we
went through the ordeal, waited and waited for the result, and then found
out the lab lost his blood. Had to do it all over again. Arrgh!

Hi, All. To those of you who have seen Dr. Goldberg with your NIDS kids, I
have a question. I have an appointment to take my son to see him for the
first time in November. One of my biggest fears about the lab tests is the
blood draw. My 3 year old is very very afraid of pain, and I know he will
fight like a demon and be totally traumatized if it's painful.
I have heard on one of the lists I'm on that a topical anesthetic called EMLA
can be used to prevent the child from feeling pain from the needle. However,
you need a prescription in order to get it. You put it on the child an hour
before the blood draw and they reportedly don't feel any pain at all. Has
Dr. Goldberg's office used this for any of your kids, or anything similar? I
was considering calling their office and asking for a prescription for it
before our appointment. Thanks!
Linda M.

I don't know much about vitamin A, but I do know that my mom gave my siblings
and I a spoonful of Cod Liver Oil everyday in the winter while we were
growing up to help prevent sickness and we were hardley ever sick! After
reading the theories on it online, I decided that it couldn't hurt my 6 year
old non-verbal autistic son. I have been giving him one teaspoon of liquid
cod liver oil per day for two weeks. Although I haven't noticed any changes,
I am astounded and surprised at the way he seems to love it! He takes it
without fuss and licks the spoon! And he won't ever usually take any kind of
medicines at all without having to hold him down.
Ron

Hi all,
Thanks so much to everyone and their great advice on pumping legs. Guess
what? Today he and his ABA therapist were