Nids

I suggest that the UK doctors do a course of ECT on Dr. Pete Singer!

In a message dated 1/4/00 1:22:13 PM Eastern Standard Time, feat@...
writes:
<<
Hi my name is Denise and I have a 6 year old son with Nero- Developmental
Disorders/ Seizers, has any one done Stem Cells on there children, and the
outcome, also, in NY or any place there must be more information on Stem Cell
and people/ Children, I run a nonprofit organization called ACPDD,
Association of Cerebral Palsy& Developmental Disabilities and would to here
about up and coming news on Stem Cells. I am also putting out a newsletter
for Long Island parents, please leave me your address and I will send a copy
of my letter. In my Newsletter it will be on HBO, Tomatic AIT training, that
is some of our topics. Thank you.
Denise

combination with
no real information on the
would be helpful.
Dawn,
We used zoloft and revia. The theory was that the zoloft would help
cognition, and the revia would help the SIBs.
It didn't help. We added prozac to the mixture, and that made things worse.
He had terrible diarrhea from the revia, and the prozac made him agitated.
I'm not really sure I can tell you exactly how we eliminated the SIBs
because we have done SO much. But I'll give you a summary of what we have
done in the last few months, and maybe you'll see something.
First, I'll start by saying Kenny had an adverse reaction to the MMR. He is
hyper sensitive to most foods, dyes, chemicals. He is 6 1/2 years old, and
was diagnosed at 27 months.
He was one of the first children (I think maybe the 4th or 5th) who was
treated with secretin by Dr. Horvath. We began in June 1998 with an
endoscopy because he had been in severe GI pain for over 18 months. To
make a long story short, we continued infusions for a year. We saw great
improvements, including some better speech, and he also became completely
potty trained (even at night). We noticed improvements in gross motor, eye
contact, social skills, and he just seemed much happier. On the down side,
we had lots more stimming, and he was much more hyper. When Dr. H performed
the endoscopy, he did find significant GI problems. He put Kenny on Zantac
instead of pepcid for reflux and told us that Kenny had inflammation and
erosion of the mucosal linings of the stomach and duodenum.
We stopped seizure meds in Dec. 1998. (It was never clear that he was
having seizures anyway.)
We stopped giving zoloft at the end of Feb. 1999.
In June 1999, my husband switched jobs, and we could no longer travel to
Baltimore for infusions every 5 weeks. In addition, Kenny had lost ALL of
his speech in April, 4 days after getting out of night time diapers, and
about 10 days after an infusion. We attributed the regression to the big
developmental milestone he had reached, and waited for the speech to come
back, but it didn't. So now the theory was, perhaps the secretin has
somehow reactivated a virus.
Teresa Binstock then looked over his immune panels (we redid them after a
year on secretin) and recommended we try acyclovir as it appeared that he
had active EBV and HHV6. We did try the acyclovir, starting at a small dose
and increasing gradually. We saw some improvements, but LOTS more stimming.
At this point he was still hitting his head, and biting his thumb. We
started more behavioral intervention for the SIBs.
We felt that after the last infusion of secretin wore off, his ABA therapy
really went down hill. At the end of July we began transdermal secretin.
ABA percentages shot back up. He was much less stimmy on the daily dose,
and the switch from secretin to gaspretin also seemed to help. (Apparently
gaspretin does not contain cysteine).
At the end of September we concluded the acyclovir was doing nothing for
Kenny but causing more stimming. We stopped it.
At the DAN! conference at the beginning of October, I spoke with a
researcher about the effects of zantac. She had emailed me previously and
suggested I get him off the zantac as it is known to have some bad
neurological side effects. In my gut, I felt she was right, because it
seemed to me that Kenny was not doing nearly as well when he was switched to
zantac from pepcid.
By the third week in October, we switched him to prilosec from zantac. Then
a few days later to prevacid (which is the same as prilosec, but does not
contain lactose). That very first day off of the zantac, the sounds that
had disappeared began to come back. (Although, I will say that he still
can't say as much as he could prior to April of this year.) He started
doing some amazing things, like pumping himself on the swing, and just
acting like a "real little boy". We attribute this not only to REMOVING the
zantac, but also to ADDING the prevacid.
We had also started supplementing with 2500 IU of cod liver oil after the
DAN! conference, where we heard Mary Megson speak. We have always felt he
had a vision problem, and recently he had become afraid of heights (although
he has an incredible sense of balance). Within days of starting the cod
liver oil, the fear of heights disappeared.
We also moved the zinc supplementation to a separate dose in the evening.
Dr. Woody McGinniss said this would be the most effective way to use zinc.
In November when our ABA consultant came, the first thing she said to me was
"WOW, he's not SIBing". To tell you the truth, I guess it went away
gradually, so we didn't really notice it.
We *think* that what is helping the most with the SIBs is the combination of
gaspretin and prevacid. We've been doing some experimentation temporarily
stopping things, but it is hard to know for sure. We've also made a real
push in the ABA to try to eliminate SIBs.
I also think that the zantac made Kenny very hyper, and the more hyper, the
more he SIBed.
I know I've packed a lot of information into a short space. The truth is,
we have tried a LOT for Kenny because we still have a LONG way to go. We
are making progress though. This year at Christmas, for the first time ever,
he enjoyed opening presents and actually played with them somewhat. In the
past, we had to bribe him with food just to tear the paper.
Prior to last April, Kenny could say over 200 words. Now he is nowhere near
that. We have fought so many regressions in the 4+ years we have been
trying to help him. I've lost count of the number of times we have had to
start over from scratch in his ABA program because he had a complete "memory
wipe". We are still on the early programs, even though we've been doing ABA
for 4 years. But recently I have gotten the feeling that the learning is
more "secure". I think the speech will come back, slowly but surely. He
seems to be doing things in the correct progression now, whereas before he
wasn't.
Cindy (Cary, NC)
cindy.p@...

It would seem the issue would be seizures and not hyperactivity.

Change is required unless you want to
remain as he is forever.
Development & behaviour change often go together.
IMO

Hi my name is Denise,
I understand a cell cannot pass the Blood-Brain - Barrier, how can we be sure
that a protein can, where can I find this information on. Now with Stems
Cells and FGF proteins, does any one know or has done this, what the long
terms effects would be.
I know it is a lot to ask, since this is not FGA approved yet, but I am
looking for information, about this.
Thank you
Denise

Does that mean taurine supplementation
may be a depressant
& possibly suitable for
trial on hyperactive Autistics?
--
http://members.xoom.com/Neil_S_Clark/contents.html

Charles,
My three kids are being treated by Dr. Goldberg, and I believe he told me
that they COULD experience die off when switching to an new antiviral
Kate

I have seen MAJOR improvements in all three of my children on low dose SSRI's
with auditory processing. My youngest child was stammering, and this went
away with the SSRI
Kate

I wanted to make sure that I remembered to thank
everyone who responded to my gaging improvement
post. I was in the process of a move, finding more
tutors for ABA, etc that I think I forgot to thank some.
Anyway, mind if we talk SSRI? Why give them?
(I am thinking int erms of the ultra low dosages
that Dr. Goldberg gives.) What is the purpose
and what improvements, negatives, etc did others
see? How long did you give it a shot?
ERika

We started our son on Famvir 14 days ago, and though he is still doing great
in most all areas, he seems to have become more emotional, and is having more
difficutly dealing with a few more difficult situations.
Does anyone have any thoughts on this? Could this be some kind of "die-off"
effect he is experiencing?
Charles

It seems to me that the more we learn the more we ought to realize that there
is so much more out there to learn. This rush to publication and the media's
need to have dramatic headlines does so much damage. How many parents will
now give up and take that stand that genetic conditions are irreversible so
why keep searching for answers? How many health care providers will say "See
I told you so!"? How many educators will say "training, that's the answer,
training." How many more kids will be lost? Does anyone have the address of
the author of the "Times" article? I think it was provided previously but
somehow I lost it! Kathy

According to twin/genetic studies etc
offspring often reflect up to 50% of characteristics
genetic to their parents.
The other part may be environmental, peers, chance etc, etc.
--
http://members.xoom.com/Neil_S_Clark/contents.html

An update of Willis Langford's compilation/paper:
"A guide to manage Autism"
is available on request from:
WillissL@...
A previous version exists @
http://members.xoom.com/Neil_S_Clark/Willis.html
(this is chapter 1 of 20)
(chains on to further chapters)
--
http://members.xoom.com/Neil_S_Clark/autism.html
For those who think
"to manage Autism"
must begin & end with
ABA
(which is understandable because
of the effort & committment required)
U may B disappointed.

I'm finally able to begin catching up on some overdue
immune-panel analyses.
The most recent is very much a "case in progress" and focuses
upon a 26 year old male who has had years mild and not so mild
regressions. EBV and hemolytic E. coli are among his challenges.
http://www.jorsm.com/~binstock/ebv-cas2.htm
Teresa Binstock
Researcher in Developmental & Behavioral Neuroanatomy

Hi all, I cant access the NIDS website, it says I dont have permission, is
this happening to anyone else? If not would someone please be so kind as to
forward the webmasters' address, I really need to get to Dr.Goldbergs' site,
thanks in advance, Liz.

I would like to remove my e-mail address from the NIDS
list serve. Can you please advise me how to do this?
Many thanks.

FEAT DAILY ONLINE NEWSLETTER http://www.feat.org
Letters Editor: FEAT@... Archive: http://www.feat.org/listarchive/
"Healing Autism: No Finer a Cause on the Planet"

Cheryl, thanks for your note and for the information. I have also read about
the overlap between CFIDS and MS and am intrigued by the relationship to
NIDS. My son has been taking Zovirax for 2 months and it is helping him so
much...I really believe that the NIDS research is on target. does your child
see Dr. Goldberg? What are you doing to treat your CFIDS? I am currently in
search of a doctor who is open to some of these newer ideas...and I have yet
to find a neurologist who has been exposed to any of this information. Very
sad...Anyway...thanks again. Margie

Hi! Just sending some infomation! Lois (JJsmom)
Welcome to Parenting from the Heart
Parenting Special Needs Newsletter
About.com
January 2nd, 2000
Volume 2-Issue 1
ISSN- 1526-9965

Does anyone know where Dr. Oleske practices medicine?
Kate

Here's the first sketch of a paper I laid aside while emoting in
response
to the NYTimes article:
Many parents of autism-spectrum children report that the child
improves
in various ways (eg, behavior, speech, etc) during and in the
days prior
to an illness.
We have speculated that these improvements may derive from an
altered
cytokines profile initiated as the child's immune system responds
to the
developing illness.
Relatedly, immune panels, CBCs, and other medical data from
autism-
spectrum children document that many of them have atypical immune
profiles and/or signs consistent with chronic-active infections
(eg,
elevated antibodies titres against HHV6, EBV, pertussis, Yersinia
enterocolitica, etc).
Furthermore, some autism-spectrum children improve significantly
or even
dramatically in response to acyclovir, which provides a growing
body of
anecdotal evidence that some autism-children have etiologically
significant viruses which are not properly immunosuppressed.
In the context of growing evidence that some autism-spectrum
children
have an etiologically significant virus (and/or other persisting
pathogen), a recent article by Scripps Institute researchers Luca
Guidotti and Francis Chisari (1) provides insights regarding why
some
autism-spectrum children manifest noticeable improvements prior
to and
during an illness. The mechanism, as we have anticipated, may be
endogenous anti-viral cytokines induced by the child's responses
to the
recently acquired infection that gives him the obvious illness;
and this
increase in new-response cytokines may be having a secondary
effect upon
the child's underlying, chronic-active infection etiologically
related to
his or her autism-spectrum traits.
Importantly, Guidotti and Chisari document human cases wherein
this
process is known to occur, present a fine discussion and
citations
wherein these processes are elucidated in non-human species, and
state
that, depending upon certain tissue-specific considerations, the
process
of cytokine-dependent viral clearance often procedes in a
non-cytolytic
way. In other words, in many tissues the viral clearance may
occur
intracellularly without generating cell death.
Towards the end of their article, the researchers describe
experiments
that focused upon mice persistently infected with lymphocytic
choriomeningitis virus (LCMV) who where then superinfected with a
"replication deficient adenovirus or [treated] by repetitive
injections
of IL-12."
"The results of this study indicate that LCMV can be eliminated
from the hepatocytes in a cytokine-dependent, noncytopathic
bystander manner, but [and here's an important tissue-specific
consideration]... other events, presumably killing [of infected
cells], are needed to eliminate LCMV from nonparenchymal cells
of the liver and from the spleen..."
"Thus, the relative sensitivity of viruses to curative
mechanisms may depend on the capacity of the infected cell to
produce the appropriate intracellular antiviral factors. This
may be particularly important for viruses that infect... cells
in vital organs, like the liver or the brain. Indeed, it has
been shown that the control of murine cytomegalovirus infection
in the liver and vaccinia virus in the central nervous system
primarily depend upon IFNg-dependent non-cytopathic mechanisms,
whereas cytopathic events probably contribute to the clearance
of these viruses from other organs..."
The authors mention type I and II interferons as well as
TNF-alpha as
cytokines that can induce non-cytolytic viral clearance (in some
cell
types) and list recent infections of vaccinia virus, adenovirus,
cytomegalovirus, coxsackievirus and measles virus as pathogens
already
documented as capable of inducing bystander viral-clearance.
Teresa
http://www.jorsm.com/~binstock
http://www.jorsm.com/~binstock/mono-1.htm
who is sad
that despite the increasing evidence of
etiologically significant viruses
in *some* autism-spectrum children,
they and their parents must wait
while Marie Bristol-Powers and her cohorts
effectively curtail research
pertinent to clearing viruses and other pathogens.
who is glad
that an increasing number of studies
focus upon cytokine-augmented antiviral therapies
and some such studies
focus upon various transfer factors
1. Cytokine-induced viral purging -- role in viral pathogenesis.
Guidotti LG, Chisari FV. Curr Opin Microbiol 1999 2.388-91.
Bcc: Guidotti, Chisari

Teresa, I wanted to let you know that I appreciated very much your response
to the NY Times article and will try to respond as you have requested.
also, I thought you might be interested in knowing that while researching my
recent diagnosis of Multiple sclerosis (just what I needed -- another medical
condition to become an expert on!!), I found an article discussing the
possibility that the HHV-6 virus is playing a role in MS. the only citation
I have is: Emerging Infectious Diseases, National Center for Infectious
Diseases, Center for disease control and Prevention, Updated: 5/17/99. I
find this quite intriguing and wish that all of the researchers were like
you! Thanks for all you do. Margie

A number of parents have written me encouraging comments about my
letter to the NY Times.
I felt a need to respond quickly to Blakeslee's article, and soon
after sharing the letter
realized that the gastro findings of D'Eufemia et al and Horvath
et al had been omitted.
Parents can write to the NYTimes and to its Science Times editor.
Go to http://www.nytimes.com/science
Find the autism essay, look around its page and you'll find links
for writing the editor and for
adding a comment to a Discussion group about various science
articles.
Also, I believe that writing the the NYTime's primary editor
could help, because Blakeslee's
article was so very one-sided (rare for a Science Times article)
but also because some kids
and families are injured by the child's not receiving
infectious/immune diagnostics that lead to
very effective treatments in a size-still-unknown subgroup of
autism-spectrum children.
So, quite a project list:
1. Visit the SciTimes URL and leave several comments.
2. Appeal to the NYTimes editor, calling for a more balanced
article -- especially since some
kids are being injured if and as they are shunted into clinics
insisting upon diagnostics and
treatment based upon "it must be genetic" diagnostics and
treatment. And imagine the
treatment progress if research were not limited by the "it must
be genetic and in-utero"
model so irrelevant to many autism-spectrum children.
If someone is so inclined, sending a copy of my written response
(get if from the webpage,
better visual impact) to the Times editor along with a parent's
cover letter would have fine
impact. My article is at
http://www.jorsm.com/~binstock/nytimes.htm
Let us turn Blakeslee's article into an opportunity to generate a
better article!
Teresa Binstock
Researcher in Developmental & Behavioral Neuroanatomy

Thank you for the card! Lois (JJsmom)

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Just passing the info! Lois (JJsmom)
From: "Libby Simmons" <simmons@...
*Feel free to pass this around to other list*
Dr. Jay Gordan is going to be on Good Morning America on 1/5. He will be
discussing immunizations with Cindy Crawford. (by the way...no shots for
her
babe at 6 mos). Be sure to write GMA and let them know what you think about
the spot
Libby (Mom of Kelsey 8)
A mom on a mission
In Indiana mailto:simmons@...
To see a picture of Kelsey visit my website at
http://members.tripod.com/~cluless_2/index.html
The best Homeschooling Autism website anywhere
http://paulbunyan.net/users/shannon/autism.htm
God invented man because Eve's vibrator ran out of batteries.
"The world is so empty if one thinks only of mountains, rivers and cities; but
to know someone here and there who thinks and feels with us, and though distant,
is close to us in spirit - this makes the earth for us an inhabited garden."
- Goethe

Lois -- this is a great group of people, and if you get on their mailing list
you find out about a lot of different seminars/treatments etc. I'm glad you
shared the information. Margie

In my opinion, Sandra Blakeslee's New York Times article about autism
(12.28.1999) was a departure from the Science Times section usually
fine reporting. I have prepared a letter to Blakeslee and the Times,
and that letter can be obtained on a webpage:
http://www.jorsm.com/~binstock/nytimes.htm
Teresa Binstock
Researcher in Developmental & Behavioral Neuroanatomy
http://www.jorsm.com/~binstock/index.htm

to: Sandra Blakeslee
Writer for Science Times
The New York Times
Dear Ms. Blakeslee,
Science Times articles often achieve a level of excellence beyond that
of articles in scientific journals. Your recent article about autism
(December 28, 1999) was an exception Instead of presenting diverse
sides of an important issue, you focused upon a single model summarized
as "it must be genetic and must occur in utero". Increasing data
indicate that this model of causation and timing is relevant only to a
subgroup of children within the autism-spectrum.
In support of the genetic-autism theory, you presented opinions of
Marie Bristol-Power and Bennett Leventhall; regarding in utero timing,
you presented speculations from Patricia Rodier and Margaret Bauman.
The flaw in your article arises from its omissions. You did not mention
the immune-atypicality findings of Reed Warren, VK Singh, HH Fudenberg,
S Gupta, AV Plioplys, and others (eg, 3-24). Nor did you present the
autoimmune and infection-related ramifications of these researchers'
findings.
You did not present ideas from the Autism Research Institute's Bernie
Rimland (2), long credited as the person who removed autism from the
tainted "science" of Bruno Bettelheim; nor did you mention or interview
any of the physicians who are treating etiologically significant immune
and/or infection-related processes in specific autism-spectrum
children, some of whom improve sufficiently so as to lose their
diagnosis, some of whom advance to inclusion within mainstream classes.
At least you offered Eric Courchesne's statements indicating he no
longer accepts Bauman's "autism must occur in utero" model. I myself
came to a similar position several years ago as I perused Dr. Bauman's
articles and primary citations along with newer articles unavailable as
she was forming her theory of in-utero timing (1).
Many parents and professionals within the autism community believe that
Dr. Bristol-Powers and her "it must be genetic and must occur in-utero"
cohorts constitute a primary stumbling block to advances in
diagnostics, research, and treatment regarding children of the autism-
spectrum.
In contrast to the one-sided, paradigm-enforcing nature of your
article, Science Times recently presented a summary of human migrations
into North, Central, and South America (11.9.1999). The article
presented traditional theories alongside newer data showing that the
older theories are in need of revision.
A similarly structured autism article would have been consistent with
Science Times' usual level of excellence and would have done justice to
the research- and clinic-based findings offering new models of
causation, diagnostics, and treatment of autism-spectrum children.
In my opinion, now that the "autism must be genetic and in-utero"
clique has had its say, Science Times ought prepare and publish another
autism article, wherein the "necessarily in-utero" model is more
thoroughly challenged and wherein the immune-atypicality and infection-
related data and researchers are fairly presented.
Sincerely,
Teresa Binstock
Researcher in Developmental & Behavioral Neuroanatomy
http://www.jorsm.com/~binstock/index.htm
This email is also presented as a web page:
http://www.jorsm.com/~binstock/nytimes.htm
References
1. http://www.jorsm.com/~binstock/bk.htm
2. http://www.autism.com/ari
3. Serological association of measles virus and human herpesvirus-6
with brain autoantibodies in autism. Singh VK et al. Clin Immunol
Immunopathol 1998 Oct;89(1):105-8.
4. Dialysable lymphocyte extract (DLyE) in infantile onset autism: a
pilot study. Fudenberg HH. Biotherapy 1996;9(1-3):143-7.
5. Immunodiagnosis and immunotherapy in autistic children. Singh VK,
Fudenberg HH et al. Ann N Y Acad Sci 1988;540:602-4.
6. Th1- and Th2-like cytokines in CD4+ and CD8+ T cells in autism.
Gupta S et al. J Neuroimmunol 1998 May 1;85(1):106-9.
7. Lymphocyte function in autism and Rett syndrome. Plioplys AV et
al. Neuropsychobiology 29.1.12-6 1994.
8. Brief report: immunoglobulin A deficiency in a subset of autistic
subjects. Warren RP et al. J Autism Dev Disord 1997 Apr;27(2):187-92.
9. Hyperserotoninemia and serotonin receptor antibodies in children
with autism but not mental retardation. Singh VK et al. Biol
Psychiatry 1997 Mar 15;41(6):753-5.
10. Strong association of the third hypervariable region of HLA-DR
beta 1 with autism. Warren RP et al. J Neuroimmunol 1996
Jul;67(2):97-102.
11. Immunogenetic studies in autism and related disorders. Warren RP
et al. Mol Chem Neuropathol 1996 May-Aug;28(1-3):77-81.
12. Elevated serotonin levels in autism: association with the major
histocompatibility complex. Warren RP, Singh VK. Neuropsychobiology
1996;34(2):72-5.
13. Increased frequency of the extended or ancestral haplotype
B44-SC30-DR4 in autism. Daniels WW et al. Neuropsychobiology
1995;32(3):120-3.
14. DR-positive T cells in autism: association with decreased plasma
levels of the complement C4B protein. Warren RP et al.
Neuropsychobiology 1995;31(2):53-7.
15. Decreased plasma concentrations of the C4B complement protein in
autism. Warren RP et al. Arch Pediatr Adolesc Med 1994
Feb;148(2):180-3.
16. Antibodies to myelin basic protein in children with autistic
behavior. Singh VK et al. Brain Behav Immun 1993 Mar;7(1):97-103.
17. Possible association of the extended MHC haplotype B44-SC30-DR4
with autism. Warren RP et al. Immunogenetics 1992;36(4):203-7.
18. Changes of soluble interleukin-2, interleukin-2 receptor, T8
ntigen, and interleukin-1 in the serum of autistic children. Singh VK
et al. Clin Immunol Immunopathol 1991 Dec;61(3):448-55.
19. Increased frequency of the null allele at the complement C4b locus
in autism. Warren RP et al. Clin Exp Immunol 1991 Mar;83(3):438-40.
20. Detection of maternal antibodies in infantile autism. Warren RP
et al. J Am Acad Child Adolesc Psychiatry 1990 Nov;29(6):873-7.
21. CD4+ helper T cell depression in autism. Yonk LJ et al. Immunol
Lett 1990 Sep;25(4):341-5.
22. Deficiency of suppressor-inducer (CD4+CD45RA+) T cells in autism.
Warren RP et al. Immunol Invest 1990 Jun;19(3):245-51.
23. Reduced natural killer cell activity in autism. Warren RP et al.
J Am Acad Child Adolesc Psychiatry 1987 May;26(3):333-5.
24. Immune abnormalities in patients with autism. Warren RP et al. J
Autism Dev Disord 1986 Jun;16(2):189-97.
If in its entirety, this document may be re-posted into other
autism-related lists.

I didn't know until yesterday that Bettleheim was a complete fraud whom has been
'outed'. I found this book(thanks to a friend) 'The Creation Of Dr. B' by
Richard Pollack at www.bn.com or www.barnesandnoble.com please go and check the
reviews, made my day :-) Happy New Year, Liz Lucy.

Liz,
If you have a credit card, you can get the online (actual) version of
the article from the New York Times website, which I think is
http://www.nytimes.com
The article appeared in the Science Times section of the newpaper, a
section that runs every Tuesday. Article's author was Sandra
Blakeslee.
alternate URL: http://www.nytimes.com/science
Teresa

Does anyone have the original NYT article / know where I can get hold of it
please?
Thanks in advance,
Liz .

The NYTimes wrote about autism:
Fifty years ago, researchers believed that autism was caused by cold
"refrigerator" mothers and weak, absent fathers.
This theory was put forward by Bruno Bettleheim. A biography of
Bettleheim's life shows beyond doubt the man and his work were completely
fraudulant, as were the degrees he claimed to have earned in Austria.
Bettleheim was an antisemite desite the time he spent in a concentration
camp. The author the bio, whose name I forget, became interested in the
subject because his brother had been treated by Bettleheim for autism and
died in an accident at a young age. The author always had questions about
the circumstances and reasons for his brother's death. The result of his
quest is a remarkable biography of a fraudulant man

In a message dated 12/29/99 8:39:16 AM Eastern Standard Time,
NIDS@onelist.com writes:
<< I am so disappointed for me and for him. I guess I am just so mentally
and physically exhausted. It has been constant hiring and training of
therapists, trying new meds, switching drugs, undergoing tests, sending urine
specimens, hair specimens, stool specimens, etc. CAN I TURN IN MY TWO WEEK
NOTICE???
I know it is not that simple. He is the oldest of three boys. I don't like
the fact that I have come to the ugly realization that he is not going to
ever be NOT autistic. I am at a different place now with my acceptance, and
I don't like it. NO, I will never 100% give up all hope, but I am getting
tired. So tired. Now, I worry about his brothers. They, whether they like
it or not, are going to have to look after their brother for the rest of
his/their lives after my husband and I are gone.
Trina:
I guess I needed a good cry. I'm tired too. We're going into our fourth
year right now and I've begun grappling with the same thoughts. But I can't
help but think that God PROMISED us Caleb would be OK. Maybe that means
something different to Him - maybe OK means he'll always be the happy,
AUTISTIC little boy we've known and loved. Then I can't help thinking that
would be a cruel joke to me. Yes, I am ANGRY too. I gotta go cry some more.
Vicki

I know exactly what you are saying. My son (I have 4 kids total) was
diagnosed PDD-NOS, or Aspergers, or High Functioning Autistic (no one could
agree) when he was 2. We did it all, spent thousands of dollars, 7 days a
week of various forms of therapy and dietary intervention. During all that
I had my daughter and she followed along in her newborn seat to therapy for
my son. I would breastfeed her while signing to my son to calm down and
follow the therapist. (He was prone to head banging and screaming fits.)
I ended up mad, too. The next step was your basic nervous breakdown. I
know it's hard, but try to take care of yourself, because I'm still
recovering (it's been 2 years now).
Second, I know the very last thing you want to try is another $%#^#%
therapy, but my son (who will be 6 years old in April) improved more than
anything else we tried when he saw a doctor in the Dallas area (you probably
aren't close, but I thought I'd mention her). She has a web site called
www.braintraining.com (don't forget the 'ing' at the end), her name is
Michelle MacAlpine, PhD. If nothing else, you can email her and she'll
reply.
If you want to, I'll go through the main steps that brought my son back.
He's in Kindergarten, no aid, has been recommended for the gifted and
talented program, fully verbal - although a few glitches remain, the storm
is over and we treat him the same as our other kids (just explain and
prepare him a little more for things).
Like I said, I'm here to talk if you need it. Nothing hurts more than
having your child ill, and neurobiological disorders are unbelievably
painful. My heart goes out to you, and you are not alone. Hold onto
whatever gives you strength and try to think of other things once in a while
(I know, easier said than done) - you've done more than 99% of people will
do, you love your son so much. Something good will happen - I'll be
thinking of you.

Hi. My autistic son is 6 yrs old now. He was diagnosed early, before he was
two. I have been busting my tail for the last four years (seems like 50 yrs)
making sure he had the very best and latest treatment. We have done and do
practically everything - ABA, secretin, Dr. Goldberg, the GF/CF diet,
supplements, antivirals, antifungals, ... I spent about a two or three months
in the "phase 1- shock, denial". Then I spent the next four years in the "phase
2- grieving, desparation". Well, I have officially arrived in the "phase 3-
ANGER!!"
He has always been considered "mildly autistic", if that matters at all. I was
so sure he would overcome the autism. We did everything right. We even got our
school district to pay for the ABA. Well, this christmas, for the 5th year in a
row, he walked right past his new and exciting gifts, over to the pile of
hundreds of videos and picked the oldest Barney he could find. He brought it to
me and said, "Mommy, I want this one.". I AM SO ANGRY. I find myself getting
mad at him. I have unfortunately come to realize that he is NOT going to be
recovered. He IS making progress. He is becoming a smarter autistic child.
But he is not losing his autistic characteristics. I am so disappointed for me
and for him. I guess I am just so mentally and physically exhausted. It has
been constant hiring and training of therapists, trying new meds, switching
drugs, undergoing tests, sending urine specimens, hair specimens, stool
specimens, etc. CAN I TURN IN MY TWO WEEK NOTICE???
I know it is not that simple. He is the oldest of three boys. I don't like the
fact that I have come to the ugly realization that he is not going to ever be
NOT autistic. I am at a different place now with my acceptance, and I don't
like it. NO, I will never 100% give up all hope, but I am getting tired. So
tired. Now, I worry about his brothers. They, whether they like it or not, are
going to have to look after their brother for the rest of his/their lives after
my husband and I are gone.
For all those who are already in "phase 3" and doing well, any good advice?
trina

My name is Denise,
I was wandering, if there are any Conference coming to NY area, if so please
let me know, thank you.
Denise Macri

I'm not sure I disagree totally,
but such stories orginate from
Doctors trying to be truthful
for a change.
Hopefully they're out of date.
--
IMO Neil

I get pure acetaminophen in a product called Feverall Sprinkle Caps. It
comes in 80 mg capsules (which I put in milk (CF of course) or juice) as my
children cannot swallow capsules. It is also available in suppositories.

I wondered if anyone knows of a good Children's chewable acetaminophen (Tylenol)
that doesn't contain Aspartame (or red dye, if at all possible)?
Thanks. Sharrill

In a message dated 12/27/99 5:38:06 AM Pacific Daylight Time,
NIDS@onelist.com writes:
<<
A while back there was a call for people to give in their personal stories
of treatment success, so that these could be read by others. Have these
been put onto the web ?? As one of the "others" at the start of the
treatment process I am keen to read the stories and especially keen to
show them to other local parents who are still being given the "lifelong
incurable developmental disorder" line ...
I'm not sure about your question on a big scale but our story is on my
website...talks about the ways we found to help our autistic son acquire
language and develop play skills and some social understanding. Check it out
at:
http://www.homestead.com/wholefamily/wholefamily1.html

I would love to have people share their stories. I would like to forward them
to a number of friends who have children with spectrum disorders. Kathy

Dear Listmates
A while back there was a call for people to give in their personal stories
of treatment success, so that these could be read by others. Have these
been put onto the web ?? As one of the "others" at the start of the
treatment process I am keen to read the stories and especially keen to
show them to other local parents who are still being given the "lifelong
incurable developmental disorder" line ...
Any one know where to find the stories ?
Muki (Shaked's father 2 - months into treatment with a log way to go but
taking steps in the right direction)

I would like to unsubscribe to this list because FMS is my greatest concern
now. I will continue to pray for all those suffering with autism.
Thanks.Hope this is the correct address.

A few of the articles at:
http://www.geocities.com/Heartland/Fields/6979/news.html
Exogenous Factors and Immune Disorders May Combine to Cause Autism
WESTPORT, Jun 29 (Reuters Health) - The incidence of autoimmune
disorders is increased in the mothers and other relatives of patients
with
autism, according to the authors of a US-based study.
"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, " Dr. Anne
M. Comi from the Johns Hopkins Hospital in Baltimore, Maryland, and
multicenter colleagues write. Their report appears in the June issue of
the
Journal of Child Neurology.
The authors used questionnaires to survey the families of 61 autistic
patients and 46 healthy controls, in order to determine the frequency of
autoimmune diseases in relatives, and of early medical events.
They report that the "[t]he mean number of autoimmune disorders was
greater in families with autism." They also write that, "[a]s 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."
According to the paper, autism was 8.8 times more likely in subjects
whose mothers had autoimmune disorders, and 6.0 times more likely if
first-degree relatives had autoimmune disorders.
"The most common autoimmune disorders in both [autistic and control]
groups were type 1 diabetes, adult rheumatoid arthritis, hypothyroidism,
and systemic lupus erythematosus," the authors write.
Dr. Comi's group also "...found several medical events, including
maternal
infections, asphyxia, prematurity, severe injury, and seizures to have
an
association with autism," but point out that "...the strength of these
observations did not reach statistical significance, possibly because of
the
small sample size."
They note that the incidence of allergies was 39% in the control group
and 11% in the autistic group. "Our finding of decreased incidence of
allergies [in autistics] could point to a dysregulation of the immune
system," the authors write.
They suggest that further studies are required to confirm their
findings.
The establishment of "...collaborative autism databases...would increase
the patient pool and allow for subdividing patients with autism into
clinically relevant subgroups," they say.
J Child Neurol 1999;14:388-394.
High Rate of Undiagnosed Gastrointestinal Problems
Found in Autistic Children
WESTPORT, Nov 18 (Reuters Health) - Unrecognized gastrointestinal
problems may contribute to behavioral problems in autistic patients.
In the November issue of The Journal of Pediatrics, Dr. Karoly Horvath
and colleagues at the University of Maryland School of Medicine in
Baltimore, Maryland, report that they evaluated upper gastrointestinal
structure and function in 36 "low-functioning" autistic children with
chronic
diarrhea, abdominal pain, gaseousness and bloating, nighttime awakening
or unexplained irritability, or a combination of these symptoms.
According to the authors, 25 children, or 69.4%, had grade I or II
reflux
esophagitis. Of these 25, 22 had "...nighttime awakening with
irritability,
signs of abdominal discomfort, or pushing on the abdomen, which are
typically reported by nonautistic children with esophagitis."
Fifteen children had chronic inflammation of the gastric mucosa, and 24
had chronic nonspecific inflammation of the duodenum. Two children had
partial villus atrophy without "...histologic or serologic evidence of
celiac
disease." In addition, the authors report, duodenal biopsy specimens
showed Paneth cell hyperplasia, and when the biopsies were compared
with those from nonautistic controls, the autistic children had
significantly
elevated amounts of Paneth cells in the duodenal crypts.
Twenty-one children, or 58.3%, had decreased activity of the
carbohydrate digestive enzymes disaccharidase or glucoamylase. All of
these children had loose stools or gaseousness.
In 27 children, the authors observed elevated pancreatico-biliary fluid
output after stimulation with secretin. They note, however, that in
children
with chronic diarrhea and a high fluid response to secretin, stool
consistency "...improved...after the procedure, and [this improvement]
lasted for a few weeks or was sustained."
In an accompanying editorial, Drs. Pasquale Accardo and Howard
Bostnick of New York Medical College in Valhalla, New York, write,
"In its complexity, autism is beginning to look like the proverbial
horse put
together by a committee." More seriously, they comment, "[This]
study...demonstrates consistent physiologic abnormalities...in autism
that
are not known to occur in any other specific gastrointestinal disorder."
They add, "The correlation of these findings with a clinical
symptom...and
its response to secretin...provide further support for a true
physiologic
abnormality."
(J Pediatr 1999;133:559-563)
--
http://members.xoom.com/Neil_S_Clark/autism.html
Hopefully updated by now.
Any suggestions ideas please forward in brief

As most of you know, I've been focusing upon a subgroup of
autism-spectrum children delineated on the basis of pathogens that can
persist within monocytes, eg, CMV, HHV6, Yersinia enterocolicita, and
even measles virus (2). A paper elaborating these concepts and providing
citations can be found at http://www.jorsm.com/~binstock/mono-1.htm
Dendritic cells develop from two lineages, monocytic cells and lymphoid
cells, and occur "within the skin, the blood and particularly within the
mucosal surfaces", thereby making dendritic cells "one of the cell
populations most likely to have the earliest contact with viruses during
infection." (1)
Pathogens that infect monocytes often persist within bone marrow and
impair hematopoiesis, which is a finding present in the immune panels,
CBCs, and other medical data derived from specific autism-spectrum
children (2).
Because dendritic cells participate in coordination of T-cell responses
(1,3), dendritic cells functionally altered by intra-cellular pathogens
may provide the mechanism for inducing some of the immune atypicalities
documented by Warren, Gupta, and others in substantial subgroups of
autism-spectrum children.
Teresa Binstock
Researcher in Developmental & Behavioral Neuroanatomy
1. Klagge IM, Schneider-Schaulies S. Virus interactions with dendritic
cells. J Gen Virol 80.823-33 1999.
2. Binstock TC. Intra-monocyte pathogens define an autism-spectrum
subgroup. http://www.jorsm.com/~binstock/mono-1.htm
3. Banchereau J, Steinman RM. Dendritic cells and the control of
immunity. Nature 392.245-52 1998.
bcc: Professor Sibylle Schneider-Schaulies
Institute for Virology and Immunobiology
University of Wurzburg
Germany

European Journal of Immunology
Volume 30, Issue 01, 2000. Pages: 185-196
Induction of optimal anti-viral neutralizing B cell responses
by dendritic cells requires transport and release of virus
particles in secondary lymphoid organs
Burkhard Ludewig *, Kevin J. Maloy, Constantino López-Macías,
Bernhard Odermatt, Hans Hengartner, Rolf M. Zinkernagel
Abstract
Dendritic cells (DC) are sentinels of the immune system, transporting antigens
from the periphery to
secondary lymphoid organs. This study investigates the interactions of DC with
B cells for the
induction of anti-viral neutralizing antibody responses. Using the vesicular
stomatitis virus
glycoprotein (VSV-G) as a model antigen, we show that DC contain infection with
cytopathic VSV
in the presence of a functional IFN system, facilitating transport and release
of low levels of live
virus in secondary lymphoid organs. DC exposed to live virus induced efficient
neutralizing anti-viral
B cell responses. In contrast, DC transporting UV-inactivated viral antigens
were poor activators of
anti-viral B cells, although they were capable of very efficiently inducing
virus-specific Th cells.
Transgenic DC expressing a membrane-bound form of VSV-G induced neutralizing B
cell
responses; however, this DC-induced, Th-dependent B cell response was
significantly slower than
the anti-viral B cell response induced by DC infected with live VSV, and was
strongly dependent
on concomitant priming of T help. These results suggest that DC may play a
double role during
infection with cytopathic virus: they transport and release live virus in
secondary lymphoid tissues for
optimal direct B cell induction and offer MHC class II-associated determinants
for induction of T
help.
Institute of Experimental Immunology, Zürich, Switzerland
*Correspondence to Burkhard Ludewig, Institute of Experimental Immunology,
Department of
Pathology, University of Zürich, Schmelzbergstr. 12, CH-8091 Zürich, Switzerland
Fax: +41-1-255
4420
Received: 13 August 1999; Revised: 22 October 1999; Accepted: 22 October 1999
Additional
Information

I just learned that this article may not be not available free from JEM,
even as some/many are.
Teresa

This article is available online. I recommend getting the citation and
abstract in PubMed, then clicking on the JEM online box. My computer may
be cookied by JEM, so you may? need a password (which is free this
millenium).
An interesting corollary of this article derives from the question: what
happens in a child having a not-fully-immunosuppressed infection of
monocytes (eg, by CMV, HHV6, MV, Yersinia enterocolitica, etc).
Second corollary: how nice to have autism models not informed by
immune-panel and CBC and gastro lab-data. Seesh! Oh well, this article
looks good:
J Exp Med 1999 Mar 1;189(5):865-70
Activated human T cells, B cells, and monocytes produce
brain-derived neurotrophic factor in vitro and in
inflammatory brain lesions: a neuroprotective role of
inflammation?
Kerschensteiner M, Gallmeier E, Behrens L, Leal VV, Misgeld T, Klinkert
WE, Kolbeck
R, Hoppe E, Oropeza-Wekerle RL, Bartke I, Stadelmann C, Lassmann H,
Wekerle H,
Hohlfeld R
Department of Neuroimmunology, Max Planck Institute for Neurobiology,
D-82152 Martinsried,
Germany.
Brain-derived neurotrophic factor (BDNF) has potent effects on neuronal
survival and plasticity
during development and after injury. In the nervous system, neurons are
considered the major
cellular source of BDNF. We demonstrate here that in addition, activated
human T cells, B cells, and
monocytes secrete bioactive BDNF in vitro. Notably, in T helper (Th)1-
and Th2-type CD4(+) T
cell lines specific for myelin autoantigens such as myelin basic protein
or myelin oligodendrocyte
glycoprotein, BDNF production is increased upon antigen stimulation. The
BDNF secreted by
immune cells is bioactive, as it supports neuronal survival in vitro.
Using anti-BDNF monoclonal
antibody and polyclonal antiserum, BDNF immunoreactivity is demonstrable
in inflammatory
infiltrates in the brain of patients with acute disseminated
encephalitis and multiple sclerosis. The
results raise the possibility that in the nervous system, inflammatory
infiltrates have a neuroprotective
effect, which may limit the success of nonselective immunotherapies.
PMID: 10049950, UI: 99160633

Has anyone done the research on the effects of alternative allergy
treatments... so the use of pharmaceuticals isn't necessary??? Yeast
treatments?? I would hate to think we need to drug our entire next
generation..
Also, they didn't mention what type of behavioral therapies were used.. does
anyone have that answer?
Vicki
Attention-deficit Disorder Responds Best To Drug Therapy
NEW YORK, Dec 14 (Reuters Health) -- Children with
attention-deficit/hyperactivity disorder (ADHD) show more improvement when
treated with a drug regimen rather than with behavioral therapy, US
researchers report.
In an article published in the December issue of the Archives of General
Psychiatry, the MTA Cooperative Group report on a 14-month study of 579
children with the disorder, in which the children were randomly assigned to
different types of treatment.
The team found that drug treatment "was superior to behavioral treatment and
to routine community care that included medication."
Both parents' and teachers' ratings of inattention and teachers' ratings of
hyperactivity and impulsiveness were better for the medication group than
for the group receiving behavioral therapy, the authors report, though other
measures did not differ for the two treatment approaches.
Combined medication-behavioral therapy also proved superior to behavioral
therapy alone, the investigators note. But this does not mean that
behavioral therapy has no role in treating ADHD. "More than three fourths of
subjects given behavioral treatment were successfully maintained without
medication throughout the study," the researchers add, "(so) it should not
be concluded that behavioral treatment interventions did not work."
The MTA Cooperative Group reports that the benefits of medication and
combined treatment were similar "for boys and girls, children previously
given medication and children who were not, and those with and without
(other) disruptive disorders."
SOURCE: Archives of General Psychiatry 1999;56:1073-1086.

A study by Helin et al has convinced me to add a measles virus (MV)
addendum
to the infected monocytes paper. For folks who've printed the paper, the
addendum follows the URL.
http://www.jorsm.com/~binstock/mono-1.htm
Addendum-2: Measles Virus
Paget's disease and a recent study by Eija Helin and colleagues
indicate that MV within bone marrow can persist within monocyte
precursors (75-79), which is consistent with peripheral MV cell
tropism in myeloid cells (eg, 80).
Helin and colleagues reported that MV was productive within myeloid
granulocyte-macrophage colony-forming cells (CFC-GM) but was
neither productive nor significantly released by differentiated
monocytes or macrophages, writing:
"Our results showed that human bone marrow progenitor
cells were susceptible to productive MV replication.
During the maturation of myelomonocytic cells some
changes occurred, which lead to restriction of MV
infection. Monocytes/macrophages supported extensive
viral RNA and protein synthesis, but no clear-cut release
of infectious virus was noted." (80)
This finding has at least two major ramifications: First, a child
with a chronic low-level MV within bone marrow would not
necessarily develop peripheral viremia. Second, MV transport to
other organs is reported (80-82), nonetheless with the brain often
protected even when neurologic damage occurs (83); the
gastrointestinal MV being found by Andy Wakefield, MD (84) may be
there as a result of having been transported within monocytes
carrying non-replicative virus.
Importantly, immune-impairment due to intra-monocyte MV has long
been realized, eg, "by increasing production of interleukin-1b and
reducing levels of tumour necrosis factor-alpha and interleukin
12." (80, 82,85-7); and titers against vaccinal antigens do not
entirely preclude MV infections (88), suggesting that a low-level,
chronic bone marrow infection would also be possible, even in
vaccinated children.
Conclusion: Measles virus attributes correspond to the criteria
this paper establishes for CMV, HHV6, and Yersinia enterocolitica
as etiologically significant participants for autism-spectrum
children in a subgroup delineated by intra-monocyte pathogens.
75. Fraser WD. Paget's disease of bone. Curr Opin Rheumatol 1997
Jul;9(4):347-54.
76. Reddy SV et al. Detection of measles virus nucleocapsid
transcripts in circulating blood cells from patients with Paget
disease. J Bone Miner Res 1996 Nov;11(11):1602-7.
77. Reddy SV et al. Bone marrow mononuclear cells from patients
with Paget's disease contain measles virus nucleocapsid messenger
ribonucleic acid that has mutations in a specific region of the
sequence. J Clin Endocrinol Metab 1995 Jul;80(7):2108-11
78. Mills BG et al. Multinucleated cells formed in vitro from
Paget's bone marrow express viral antigens. Bone 1994
Jul-Aug;15(4):443-8.
79. Helin E. Measles virus replication in cells of myelomonocytic
lineage is dependent upon cellular differentiation stage. Virol
1999 253.35-42.
80. Esolen LM, Ward BJ, Moench TR, Griffin DE. Infection of
monocytes during measles. J Infect Dis 1993 Jul;168(1):47-52.
81. Vainionpaa R et al. Early signal transduction in measles virus-
infected lymphocytes is unaltered, but second messengers activate
virus replication. J Virol 1991 65:6743-8.
82. Karp CL et al. Mechanism of suppression of cell-mediated
immunity to measles virus. Sci 1996 273:228-31.
83. Moench TR et al. Acute measles in patients with and without
neurological involvement: distribution of measles virus antigen and
RNA. J Infect Dis 1988 Aug;158(2):433-42.
84. Wakefield AJ et al. Ileal-lymphoid-nodular hyperplasia,
non-specific colitis, and pervasive developmental disorder in
children. Lancet 1998 Feb 28;351(9103):637-41.
85. Ward BJ et al. Cytokine production in vitro and the
lymphoproliferative defect of natural measles virus infection. Clin
Immunol Immunopathol 1991 61:236-48.
86. Leopardi R et al. Measles virus infection enhances IL-1b but
reduces tumor necrosis factor-alpha in human monocytes. J Immunol
1992 149:2397-401.
87. Griffin DE et al. Natural killer cell activity during measles.
Clin Exp Immunol 1990 Aug;81(2):218-24.
88. Wu VH et al. Measles virus-specific cellular immunity in
patients with vaccine failure. J Clin Microbiol 1993
Jan;31(1):118-22.</pre

Attention-deficit Disorder Responds Best To Drug Therapy
NEW YORK, Dec 14 (Reuters Health) -- Children with
attention-deficit/hyperactivity disorder (ADHD) show more improvement when
treated with a drug regimen rather than with behavioral therapy, US
researchers report.
In an article published in the December issue of the Archives of General
Psychiatry, the MTA Cooperative Group report on a 14-month study of 579
children with the disorder, in which the children were randomly assigned to
different types of treatment.
The team found that drug treatment "was superior to behavioral treatment and
to routine community care that included medication."
Both parents' and teachers' ratings of inattention and teachers' ratings of
hyperactivity and impulsiveness were better for the medication group than
for the group receiving behavioral therapy, the authors report, though other
measures did not differ for the two treatment approaches.
Combined medication-behavioral therapy also proved superior to behavioral
therapy alone, the investigators note. But this does not mean that
behavioral therapy has no role in treating ADHD. "More than three fourths of
subjects given behavioral treatment were successfully maintained without
medication throughout the study," the researchers add, "(so) it should not
be concluded that behavioral treatment interventions did not work."
The MTA Cooperative Group reports that the benefits of medication and
combined treatment were similar "for boys and girls, children previously
given medication and children who were not, and those with and without
(other) disruptive disorders."
SOURCE: Archives of General Psychiatry 1999;56:1073-1086.

Doctor Visits By Youngsters With ADHD Up 90%
NEW YORK, Dec 14 (Reuters Health) -- The number of doctor visits made by
youngsters diagnosed with attention-deficit/hyperactivity disorder (ADHD)
increased by 90% between 1989 and 1996, and three-quarters of those visits
involved drug treatment, according to a report published in the December
issue of the Archives of Pediatrics and Adolescent Medicine.
Dr. Julie Magno Zito of the University of Maryland in Baltimore led a team
of researchers in analyzing data from the National Ambulatory Medical Care
Survey, looking at visits for ADHD made by children aged 5 to 14, and at
prescription patterns for these visits.
The proportion of youth visits to physicians that were for ADHD increased
steadily from 1989 to 1996, and so did the number of visits that involved
drug treatments. For example, the proportion of ADHD youth visits that
involved prescription for stimulants increased from 62% to 77%.
About 61% of ADHD visits were made to primary care providers, about 25% to
psychiatrists, and about 8% to neurologists. The investigators found
significant differences in prescribing patterns according to specialty:
primary care doctors were more likely to prescribe stimulants alone, while
psychiatrists were more likely to prescribe other psychotherapeutic drugs
either alone or in combination with stimulants.
Zito and colleagues note that the standard therapy for ADHD is stimulants,
and over 80% of ADHD visits that involved medications involved just those.
But about 8% of medication-related visits involved other drugs instead of
stimulants, and about 10% involved both. Youngsters receiving "more complex"
drug therapy were more likely to have depression or behavior disorders than
those children given only stimulants. The nonstandard drugs most often given
to children with ADHD were antidepressants, clonidine, and antipsychotics.
The authors suggest that their findings should be used to guide systematic
research evaluating different therapies for different groups of ADHD
patients. Writing in an editorial in the same issue, Dr. Mark L. Wolraich of
Vanderbilt University in Nashville, Tennessee, agrees.
"In the future, we will need to demonstrate that the treatments make a
difference in how the children behave," Wolraich states.
"As Zito and her colleagues point out, until we are better able to address
practice questions, it will be difficult for us to provide realistic and
effective practice guidelines and we will not be able to answer the
continuing public concern about to what extent is current stimulant
medication use appropriate," Wolraich concludes.
SOURCE: Archives of Pediatrics and Adolescent Medicine 1999;153:1257-1263,
1220-1221.

From: Sarah Laurenson & Alan Dine <amd&scl@...
Subject: FW: Xmas
BARBIE AND KEN'S LETTER TO SANTA
Barbie's Letter To Santa:
Dear Santa,
Listen you fat troll, I've been saving your ass every year, being the
perfect Christmas Present, wearing skimpy
bathing suits in December and dressing in fake Channel at sappy tea
parties. I hate to break it to ya', Santa,
but it's pay back time. There had better be some changes around here, or
I'm gonna call for a nationwide
meltdown, and trust me, you don't wanna be around to smell it.
These are my demands for Christmas 1999:
1. Sweat pants and an oversized sweatshirt. I'm sick of looking like a
hooker in hot pink bikinis. Do you have
any idea what it feels like to have nylon and Velcro up your butt? I
don't suppose you do.
2. Real underwear that can be pulled on and off. That cheap-o molded
underwear some genius at Mattel came
up with looks like cellulite!
3. A REAL man... I don't care if you have to go to Hasbro to get him,
bring me GI JOE. Hell, I'd take
Tickle-Me-Elmo over that pathetic bump of a boy toy, Ken. And what was
up with that earring anyway?
HULLO!?!
4. It's about time you made us all anatomically correct. Give me arms
that actually bend so I can push the
aforementioned Ken-wimp away once he is anatomically correct.
5. Breast reduction surgery. 'Nuff said.
6. A jog bra. To wear until I get the surgery.
7. A new career. Pet doctor, school teacher and make real money.
8. A new, more 90s persona. Maybe "PMS Barbie," complete with a pint of
cookie dough ice cream and a bag
of chips.
9. No more McDonald's endorsements. The grease is wrecking my vinyl
complexion.
10. Mattel stock options. It's been 40 years - I think I deserve a piece
of the action.
Considering my valuable contribution to society and Mattel, I think
these demands are reasonable. If you don't
like it, you can find yourself a new bitch for next Christmas. It's that
simple.
Yours truly,
Barbie

A simple sketch of citations relating to autism, Candida albicans, and
immunity can be found on http://www.jorsm.com/~binstock/candida.htm
The file is appx 28k so will probably require 11 or 12 pages if a person
prints the entire document.
Teresa

David,
My webpages offer an analysis of the medical data of a child whose
portrait included
very high levels of hemolytic E. coli and Klebsiella pneumoniae, with no
Lactobacillus
despite goodly supplementation. This child was culture negetive for
Yersinia enterocolitica
but very antibody positive. After some additional therapies, his hEc is
not found, and Lactobacillus species are now colonizing his gi-tract.
This child is doing better behaviorally etc as a result of treatments
directed against his bacterial pathogens. I will Bcc this to the other
parent in case she choses to write to you.
The analysis for this child was extensive and can be found via
http://www.jorsm.com/~binstock/mike-1.htm
Probably no other child will have Mike's exact combination of pathogens,
so don't try to derive exact conclusions from a Mike-specific analysis.
Teresa

Dear Listmembers,
At this late date, some of you may be doing some of your last-minute
shopping online. I just wanted to remind everyone that MAT
(Medicine for Autism Today) and NIDS Research can benefit from a
portion of your online purchases if you shop with Shop2Give or
BigPlanet. To visit these sites, visit mat.org and click through.
Best wishes,
Sandy

This study gains additional significance via the
atopy/gastrointestinal-CMV
connection described in Occena RO et al.
Arch Dis Child 1985 Apr;60(4):338-43
Herpes simplex infections in atopic eczema.
David TJ, Longson M
One hundred and seventy nine children with atopic eczema were
studied prospectively for two and three quarter years; the mean
period of observation being 18 months. Ten children had initial
infections with herpes simplex. Four children, very ill with a
persistently high fever despite intravenous antibiotics and rectal
aspirin, continued to produce vesicles and were given intravenous
acyclovir. There were 11 recurrences among five patients. In two
patients the recurrences were as severe as the initial lesions, and
one of these children had IgG2 deficiency. Use of topical
corticosteroids preceded the episode of herpes in only three of the
21 episodes. Symptomatic herpes simplex infections are common in
children with atopic eczema, and are suggested by the presence of
vesicles or by infected eczema which does not respond to antibiotic
treatment. Virological investigations are simple and rapid:
electron microscopy takes minutes, and cultures are often positive
within 24 hours.
PMID: 4004311, UI: 85224351

Several years ago, I wrote a paper based upon a perusal of Bauman's and
Kemper's *hypothesized* conclusion, based upon autopsy analysis, that
autism necessarily had to occur in utero. A major concern of B and K was
the presence or absence of gliosis. I do not question the sincerity of
either researcher; however, their (hypothetical) interpretation about
in-utero timing was based upon very old studies with very dubious
methodologies (eg, how many autism-spectrum children have cerebellar
abnormalities due to knife-cuts of the cerebellum). Since publication of
that study, newer research elucidated gliotic and non-gliotic
conditions. My paper is online at http://www.jorsm.com/~binstock/bk.htm
and has the primary citations.
Importantly, as even Marie Bristol-Powers now admits, many autisms occur
well subseqeunt to the neonatal period. That "autism is an in-utero
event" is a myth whose time has passed.
My hunch is that many specific cases of autism are etiologically
dependent upon one or several pathogens (whose effects can be augmented
by ill-timed vaccinations); and of course the mild immune glitches
documented by Reed Warren can add to the likelihood that other
environmental factors will lead to a given child's joining the
autism-spectrum.
Teresa Binstock
Researcher in Develmental & Behavioral Neuroanatomy

What are EPD shots? My son is taking zovirax (acyclovir) and we think it is
very helpful. Margie

We will be starting our son shortly on Valtrex and were wondering if there
are any other parents out there whose child is taking Valtrex (or other
anti-viral medication) and also getting EPD shots. We want to know whether
you are stopping administration of Valtrex during the 3 primary EPD days.
TIA
Jeff and Valerie Stone

There was an article about 10 years ago that reported the results of 27
autopsies on individuals with autism. All were found to be abnormal. The
assumption was made that this was a congenital defect but perhaps it was a
result of damage caused by the out of control immune system?

The following article is currently available free via BioMedNet's
arrangement with the publishers of the Current Opinion... Journals. A
password is needed, the pdf version may be difficult to download, but
the text presentation downloads nicely as an html file. Personally, I
just scroll across the entire article and copy it into wordpad, then
save as txt file. Many among us realize that the amygdala is strongly
implicated as a major participant in most (if not all) autism-spectrum
children.
http://www.current-opinion.com
Vol. 6, No. 2, April 1996
The amygdala and emotion
[Review article]
Michela Gallagher, Andrea A Chiba
Current Opinion in Neurobiology 1996, 6:221-227.
Outline
Abstract
Abbreviations
Introduction
Emotion and amygdala damage in humans
Studies of associative learning in humans with amygdala damage
The modulation of memory after amygdala damage
Studies of fear conditioning in the rat
Specialized function of amygdala subsystems in associative learning
Conclusions
Acknowledgements
References and recommended reading
Copyright
Abstract
The amygdala complex has long been known as part of the neural circuitry
critical for emotion.
Beyond its role in emotional reactivity, studies of animal models and
patients with amygdala damage
demonstrate its importance in emotional learning, whereby cues acquire
significance through
association with rewarding or aversive events. Although its function in
associative learning has
become well established, other recent research has advanced the concept
that the amygdala
regulates additional cognitive processes, such as memory or attention.
For example, a
correspondence in the function of the amygdala has recently been shown
in the modulation of
memory in humans and laboratory animals. The use of animal models has
progressively defined the
circuitry for these functions within the amygdala and its
interconnections with other brain systems,
including pathways through which the amygdala modulates memory and
regulates attention. These
various lines of research are progressively advancing our understanding
of the amygdala's role in
providing linkages between affect and cognition.
Abbreviations
CS-conditioned stimulus;
SCR-skin conductance response;
US-unconditioned stimulus.
Introduction
Emotion encompasses a wide range of experience and can be studied in a
variety of ways, ranging
from verbal descriptions to the measurement of covert physiological
responses, such as heart rate. A
potentially useful framework for neurobiological studies is provided by
a model in which emotions
are considered along two dimensions [1]. On one dimension, emotional
states range from positive
(e.g. happy or confident) to negative (e.g. fear or anger). These
different emotional states, in turn, are
associated with different behavioral tendencies. In the case of positive
emotional states, there is a
tendency towards attraction or approach. In contrast, aversion and
defense are associated with
negative emotional states, in which withdrawal, escape and avoidance are
likely to occur. A second
dimension of emotion is arousal. Both positive and negative emotional
states can range on this
dimension from relative calm to high degrees of arousal. Consideration
of these dimensions of
emotion is useful in determining the neural circuits involved.
In their initial study of temporal lobe damage in nonhuman primates,
Klüver and Bucy ([2]; see also
[3]) described a loss of emotional reactivity, characterized by a
relative absence of arousal and a
change in behavioral responses to emotional stimuli. They observed that
monkeys with damaged
temporal lobes (including the amygdala, the hippocampal formation, as
well as the non-limbic
temporal cortex) were generally placid and approached objects that they
would normally perceive as
threatening. A similar pattern of hypoemotionality is commonly described
in clinical case reports of
human patients with amygdala damage[4]. Such effects of amygdala damage
suggest a global
function in the regulation of emotion. However, recent research,
discussed in this review, indicates
that distinct circuitry within the amygdala subserves specific aspects
of emotion, differing with respect
to behaviors regulated by negative and positive emotional states.
Moreover, distinct circuitry
underlies the control of arousal by the amygdala, providing evidence for
a dissociation in the arousal
and valence dimensions of emotion.
Emotion and amygdala damage in humans...
<much deleted...

Dear listmates,
Our 10-year-old daughter, with CFIDS/ME as of last Winter, has finally gotten a
referral through our insurance to a doctor at CHLA, which is on the insurance
plan. I believe, based on what our insurance appeals contact told me recently,
that that CHLA doctor will be able to refer our daughter to a doctor who DOES
treat CFIDS/ME, even though not on our insurance plan, without having to go
through the appeals process again.
I should be receiving the NIDS conference tapes soon. Until I do, I'm wondering
if I should request referral to Dr. Goldberg, who is closer to where we live, or
to Dr. Galpin, who is at USC which is associated with CHLA. Does Dr. Galpin
accept patients, or is he strictly a researcher?
Please respond if you can direct me to the appropriate doctor.
Thank you so much for your help,
Kathryn Evans

A muchly refined draft of my aphasia/gut-brain/neuranatomy paper is now
online:
The title is: ANTERIOR INSULAR CORTEX:
the Gut-Brain Connection
in aphasic autism-spectrum children
This is a draft as I await several "personal communication" verifications,
but a parent is welcome to share the paper with his or her child's
physicians.
Teresa

We (Lisa and Pierre-Yves Dugua) were at Ivymount School thursday night too. We
had a table for MAT at the entrance. We hope you enjoyed Dr. Goldberg's talk.
Call us at 301 942 4678 or email Pat Weaver (jpweaver@...) it you want to
help spread the word. We need all the help we can get.

I was at Dr.Goldberg's talk last night in Rockville, MD and was wondering if
anyone else on the list was there. I am hoping to get in touch with MAT to
find out what we can do to help make Dr. Goldberg's ideas more available to
the general public. Any ideas? Margie

I've finished a preliminary sketch of a gut-brain mechanism quite
different from that sketched in Susan Owens' GAG/CCK paper.
My paper's draft needs some verification of its Personal Communication
citations from the individuals the paper mentions, so please don't
circulate the paper -- which, like Susan's and my other papers, is
copyrighted.
As with any paper's draft, comments/suggestions would be appreciated.
http://www.jorsm.com/~binstock/insular.htm
Teresa

Single injection of secretin does not treat autism
NEW YORK, Dec 08 (Reuters Health) -- Despite claims that an injection of the
hormone secretin may help autism, children who received secretin in a
carefully designed study fared no better than children who received a
placebo, that is, a shot of an inactive substance, according to a new
report.
Media reports suggested that secretin could help the developmental disorder
autism after a 3-year-old autistic child showed improved behavior and
language skills after receiving a shot of secretin during a medical
procedure. Because there is no proven drug treatment for autism, "unproven
treatments are widely used," and "thousands of children with autistic
disorders may have received secretin injections" in light of this single
case, according to the report published this week in The New England Journal
of Medicine.
But the hormone is not an effective treatment for autism, the researchers
conclude. "Our results are quite clear. Secretin simply did not benefit
these children," said Dr. Adrian Sandler from Thoms Rehabilitation Hospital
in Asheville, North Carolina, in an interview with Reuters Health.
Sandler and his associates compared a single injection of secretin with a
single injection of a saline (salt-water) solution in 56 children with
autism or pervasive developmental disorder, a related condition.
When compared with placebo, secretin provided no significant improvement in
any of 16 different measurements of the children's communication skills or
autism behaviors, the report indicates.
Both groups of children, those treated with secretin and those who received
placebo, showed improvements in 6 of the 16 measurements, but the magnitude
of the improvements was the same, according to the authors.
Among the children for whom complete information was available, 9 of 27 in
the secretin group responded to treatment, compared to 7 of 25 in the
placebo group, the researchers report. None of the children experienced
serious side effects from either treatment.
But after being informed of the results of the study and of the results of
their own child, 63% of the parents in the secretin group and 76% of the
parents in the placebo group remained interested in secretin treatment for
their children, the authors note.
And despite their negative results, the researchers caution that longer-term
treatment or higher doses of secretin may yield different results. "For
now," Sandler said, "I advise the families of my patients to take a 'wait
and see' approach. Other studies are under way that should clarify these
issues."
"It is important to note that other treatments for autism have been
empirically validated," the researchers add. "These include direct
behavioral instruction to improve social interaction and communication
skills and behavioral and medical interventions for managing the aberrant
types of behavior associated with autism."
"Pursuing unproven treatments risks depleting the financial and psychosocial
resources of families," warns Dr. Fred Volkmar of Yale University School of
Medicine in New Haven, Connecticut, in a related editorial.
Commenting on the widespread claims of secretin's curative powers, Volkmar
concludes, "What makes an interesting television program may not, of course,
be the same as what makes good science."
SOURCE: The New England Journal of Medicine 1999;341:1801-1806, 1842-1843.

Perhaps your paediotrican needs to gain weight?
I didn't know he was on it.
It's such a novelty hearing about a professional
worried about nutrition or food,
I'm stunned and shocked.
Most are only capable of writing prescriptions,
to have an opinon as well, amazing.
My son lives on snack foods
a few things continuosly through the day,
(so in reality mealtime is irrelevent to him)
he eats when he's hungary,
despite locked cupboards and fridges.
--
http://members.xoom.com/Neil_S_Clark/autism.html
Really it comes down to ones current belief system etc.
When has his doctor been right before? Ever?
Who can anyone trust? but oneself.
Can one trust ones own opinon?
(especially when it affects someone else)

Michelle,
That is a marvelous idea and I will write and send detailed letters in my
state.
Mary

REMINDER:
THURSDAY, DECEMBER 9...IN ROCKVILLE, MARYLAND...AT THE IVYMOUNT
SCHOOL...11614 SEVEN LOCKS ROAD...AT 7:30 PM....
DR. GOLDBERG WILL TALK ABOUT "NIDS: AN IMMUNOLOGIC PROCESS"...
ADMISSION IS 10 DOLLARS (20 DOLLARS WITH BABY SITTING)
RSVP THE IVYMOUNT SCHOOL : 301 469 0223

Please tell Erin that the Prince George's County Chapter says "hi."

Hello! It is the Holidays and I have not been posting much - but be
assured that I am still trucking on, in neutral for the Holidays, but still
trucking on for National Autism Awareness..............
Some of my personal thoughts on Autism Awareness that I have planned to work
on, and or have started and will resume after the Holidays:
Letter writing campaign, especially sending in my story to Congressman
Burton's daughter for her to deliver to Congressman Burton for hearings in
April the week of our rally.
Making the letter very detailed with all aspects of how autism affects the
daily life of the child and the family - from insurance, school, long term
care and education, lack of medical intervention in the cause and
treatment..... and making bunches of copies to send in to newspapers and
whoever I think of, especially all Congressmen in my state. WHETHER it
involves vaccine issues or not, I would encourage you to send in your
story! All aspects of Autism need to be read, not just the ones about
vaccinations.....
Continue getting my, OUR , "Help Spread the Word and Raise the Awareness"
information package to all groups and organizations in my state and
nationally for them to spread to their mailing lists. The information
packages contains a cover letter, a flyer for the rally that includes the
"Open Your Eyes to Autism" picture project information, a flyer about the
Quilt project and the quilt square specifications and submission address, a
copy of Victoria Beck's book order form, an awareness ribbon when I have
them in stock, and a donation envelope. Even if people cannot attend the
rally, they will have information on how they can be a part by submitting
the items.
If you know of an Autism group or organization or publication that I can
send the information to, please post me PRIVATELY - tguppy@... - and I
will get the information to them!
These things I feel will benefit autism awareness long after the rally comes
and goes....... so please send in your letters to your local media and to
Congress! Let them start the new session swamped with the issue of AUTISM
that we will NOT let go unnoticed in the year 2000!!!!
Happy Holidays,
Michelle
tguppy@...
Man, if everyone on ALL Autism related lists sent in a copy of their "autism
issues" they face and the need for more awareness and funding, to their
state legislatures and to Congress, would that not make a big impact?
Surely there are at least 1500 or more people on these lists, and if we ALL
write to Congress about Autism.......... Just type a detailed letter,
make copies, and send them to however many names and addresses we can get a
hold of in Washington.......... They serve the people if they are
pressured enough from the people.................
Wouldn't it be a great thought for all the Congressmen to come back to their
desks in the Spring to find stacks and stacks of letters about
Autism............ the buzz in D.C. will be AUTISM AUTISM
AUTISM..............

If you have a Health Care Provider willing to work with you they can go to
Dr. Goldberg's website to the Physician part and send Dr. Goldberg the tests
that you have already had done and ask him to suggest what else you need.
Good Luck!

Hello all,
Just a reminder that At my autism meeting tomorow Erin Garth From
John Hopkins University will be here to talk about some autism studies
that they are doing and that maybe you would like to patisapate in. I
live in Hagerstown Md, About an hour from Washington DC. Anyone
interrested in coming please e-mail me and I will give Directions. There
is also childcare at only a $1.00 per child. It would be nice to meet
some of you all!! Thanks, Lois (JJsmom)

Cathy Riccobono had posted a request for success stories. Since I look at these
postings in the Digest format, the email address to send the stories to does not
display. Please e-mail me directly with the e-mail address as I would like to
share how my child was helped so far. Thanks!

Regarding child-specific amino acids, an important consideration is that
of whether or not there were other medical signs (eg, elevated titers
against EBV, extraordinary colonizations by Klebsiella pneumoniae, or
many etc). If so, then is the amino-acid therapy used in conjunction
with something else (eg, acyclovir or kutapressin)?
Also, child-specific fatty acid supplementation has helped some kids
significantly.
Teresa

Katherine,
Thank you for replying. Could I ask you a few other questions ?
Is it the dr. Pangborn from Klaire Labs ? Do you think I can send him our
daughters results and ask for his advice or does my pediatrician have to do
this ?
How do they do this therapy : is it an infusion or can it be given another
way ?
Just one other question : did you see an improvement in growing afterwards ?
Our daughter fell below P3 on all growth charts. Before we started the GFCF
diet she was higher and our pediatrician insits on stopping the diet.
Josiane
Josiane,
We tested our daughter for amino acid levels in urine and in blood to which
she came back low in almost every category. My current doctor consulted
with Dr. Pangborn a chemist and he designed an amino acid therapy for my
daughter's needs. Ariana has done very well on this supplement. It is very
expensive but very much worth it.Sincerely,Katherine
<< Probably a stupid question, but I never heard about
"amino-acid-supplementation therapies". As our little daughter is too low
in several essential amino-acids in her blood, I would like to learn more
about this. Could you please tell me where I can find more information
about it (websites... ?). Thank you, Josiane