Nids

Sandy,
For a fairly good summary of the many criticisms of the Wakefield study
you might consult the Fall 1998 issue of the NAARRATIVE -- this is the
newsletter for the National Alliance for Autism Research.
Martin

Lisa ( Lucy, Liz )
Is there more than one NIDs list ? ( now I'm confused.......)
Sharon

In the light of the Wakefield announcement regarding "persistent
measles infection" in the intenstines of autistic children, I wonder
if this might explain the positive response by so many of our kids to
the antiviral regimen (Valtrex,Zovirax,etc.). If so, what antiviral
agents are believed to be MOST effective against the measles virus?
How does one test for measles in the intestinal tract?
I have questions, too, about the Wakefield announcement. What
percentage of autitic kids showed this infection? Was there a
control group of "NT" kids who were also tested for this infection?
If so, what percentage of NT kids also show this infection, or does
it appear to be EXCLUSIVE to autistic children?
Finally, the assertion is that "Autistic Enterocolitis" is now a
"medically accepted" term. What defines a "medically accepted" term?
Is there a body responsible for this, or does it happen by simple
consensus of the medical community (i.e. doctors).
Lots of food for thought ....
Sandy

Here I go again with another question :
Has any of you use or ever used wellbutrin ?
Any experience with it ( good or bad ) that you can share ?
( can e-mail me privately if preferred )
Thanks
Sharon

Developmental changes in brain serotonin synthesis capacity in autistic and
nonautistic children.
Author
Chugani DC; Muzik O; Behen M; Rothermel R; Janisse JJ; Lee J; Chugani HT
Address
Department of Pediatrics, Children's Hospital of Michigan, Detroit 48201, USA.
Source
Ann Neurol, 45(3):287-95 1999 Mar
Abstract
Serotonin content, serotonin uptake sites, and serotonin receptor binding
measured in animal studies are all higher in the developing brain, compared with
adult values, and decline before puberty. Furthermore, a disruption of synaptic
connectivity in sensory cortical regions can result from experimental increase
or decrease of brain serotonin before puberty. The purpose of the present study
was to determine whether brain serotonin synthesis capacity is higher in
children than in adults and whether there are differences in serotonin synthesis
capacity between autistic and nonautistic children. Serotonin synthesis capacity
was measured in autistic and nonautistic children at different ages, using
alpha[11C]methyl-L-tryptophan and positron emission tomography. Global brain
values for serotonin synthesis capacity (K complex) were obtained for autistic
children (n = 30), their nonautistic siblings (n = 8), and epileptic children
without autism (n = 16). K-complex values were plotted according to age and
fitted to linear and five-parameter functions, to determine developmental
changes and differences in serotonin synthesis between groups. For nonautistic
children, serotonin synthesis capacity was more than 200% of adult values until
the age of 5 years and then declined toward adult values. Serotonin synthesis
capacity values declined at an earlier age in girls than in boys. In autistic
children, serotonin synthesis capacity increased gradually between the ages of 2
years and 15 years to values 1.5 times adult normal values and showed no sex
difference. Significant differences were detected between the autistic and
epileptic groups and between the autistic and sibling groups for the change with
age in the serotonin synthesis capacity. These data suggest that humans undergo
a period of high brain serotonin synthesis capacity during childhood, and that
this developmental process is disrupted in autistic children.
Language
Eng
Unique Identifier
99170258

Liz and Kimberly :
Thanks for the web addresses ! It was very interesting.
Has anyone been to that research center and can you share your experience ?
Anyone in the east that know of a similar program ? ( other than Teacch ? )
Thanks, Sharon
ps : Liz, I believe I belong to the NIDs list, thanks !

Web site for the Koegel's is www.education.ucsb.edu/~doniel/autism.html.

Hello everyone!
My GREAT O.T. LADY just give me a book called "WIN-WIN IEP" FOR STUDENTS
WITH AUTISM. I wanted to share this information with my listmates as it
looks like it is a good book. It is written by Beth Fouse and you can
get it thought Future Horizons inc. The address is : 720 N. Fielder Rd.
Arlington, TX 76012 or the phone # is :1-800-489-0727 or the website is
: www.onramp.net/autism or the e-mail address is edfuture@...
Please e-mail me if you would like more information.Thanks, Lois (mom to
JJ bug)

Anyone out there have a we b page address for the Koegel institute in santa
Barbara ?
I tried searching for it on the internet but couldn't find anything.
Thanks
Sharon

I have the book. I have not used it yet because it does require that your child
have a great deal of langauge ability to begin with. It does have some
interesting ideas and I hope to be able to use it in the futre. I think it
mentions child should be at least 5 years old.
From: lois noland <jlois@...
Hello, I think I am going to order "Teach me language" by Sabrina
freeman. Could anyone tell me if they have the book and has it helped
their child with language? Any information will be of help. Thanks in
advance!! Lois

Hello, I think I am going to order "Teach me language" by Sabrina
freeman. Could anyone tell me if they have the book and has it helped
their child with language? Any information will be of help. Thanks in
advance!! Lois

Lois - This is great! Where do you live? We are in the midst of our IEP
and our son's program sounds similar to yours. However, we are right now
struggling with services for summer -- extended school year or ESY in the
land of acronyms.
Last year Daniel (who is 7) had six weeks of a four-day-a-week program,
from 8:30 am to 3:00 pm. The morning he worked on his academics in a
Resource Room (Special Ed)-type setting, and had his speech (30 minutes
each day) and OT once a week(45 minutes). In the afternoon he attended a
day camp program with an aide (had lunch with his peers, and participated
in the afternoon program). The Special Ed Director in our district has
been under intense pressure from the other Special Ed directors in the
county to *not* offer the program again this year, so we are finding
ourselves having to fight again for comparable services this year.
Is anyone else getting ESY services, and if so, where do you live and what
do they look like (how much per day, for how many weeks, what kind of
services, etc.). Any information would be greatly appreciated and would
really help our effort here in Michigan - thank you!
--Kathleen--
Kathleen J. McClatchey (Whiteman) kjm@...
Executive Communications office phone: (734) 763-8190
Office of the Chief Information Officer fax: (734) 764-3988
5085 Fleming Administration Building cell phone: (734) 358-5122
University of Michigan home phone: (734) 944-1828
Ann Arbor, MI 48109

Would jump in with comment, that as discussed at recent Saturday night
discussions, it is not an issue of how much money is raised, but HOW it is
spent (at this point) that will determine rate of success, rate of new
therapy for Autism.
MJG

?? - does anyone (at FEAT or otherwise) have any further data (support of
data) on Dr. Wakefields "measles association.. His initial publication (in
Lancet I believe) was discredited by multiple infectious disease experts.
From my own background, "measles" is certainly one of the virus capable of
setting off an immune reaction in the brain, but it would be extremely
unlikely we were going to find live /active measles virus in these children
GI tracts (or anywhere else).
Would welcome further information - important distinction re issue of
potentially live virus vs. ?? viral particles.
Take care,
MJG

Hello, I just had my sonds IEP meeting for next year. And I wanted to
let you know what JJ is getting. He has 2 aids, one in the morning and
one in the afternoon. They work with him one on one and go with him to
art, music, gym etc... He is getting 2 hours a week speech and 1 hour a
week o.t. He also has what is called the "wraparound program". The lady
that does his ABA programs also goes into the school a couple of times a
week and checks on his programs or has one of her staff go in.Then they
come into the home about 6 hours a week to do programs and work on
social programs.Just thought I would let you all know what is going on
where I live. JJ is 11 years old and going in fifth grade. Lois

Can anyone please offer any advice about seeing a specialist in the midwest.
Does anyone have any experience with Dr. Stayton in Independence, MO? What
about any physicians in or near Chicago? I'm particularly looking for a DAN!
protocol physician who is patient, open-minded and up-to-date on the latest
treatments. I am familiar with the DAN! provider list, but I am seeking to
learn about personal experiences with any of these doctors.
Thank you,
Kim (mom of Lindsay/24months)

Wow!
We could be on to something here! I started Lindsay on calcium-enriched orange
juice 4/25 and the worsened behaviors were on 4/26! Included, I've noticed, is
head-holding (on occasion) and when she cried, it was more high-pitched and
louder. Perhaps this is some sort of interaction?????
I'm going to disontinue the OJ for now and see what happens.
Kim(mom of Lindsay/24months)

Kimberly,
Have you tried "Dari-Free"? It's a potato-based milk substitute,
smells like vanilla. My son likes it and it is high in calcium. I
can look up the info for you if you can't locate any.
Best wishes,
Sandy
On 26 Apr 99 Kimberly D. Ryan (Kimberly D. Ryan <NIDS@onelist.com

Hi Lois, I give my son 1 capsule. He is 4 and weighs 40 lbs. I cut open
the end and squeeze it into his scrambled eggs, or tuna sandwich. ~Marlene

My daughter is on dairy-free diet. She loved milk. Refuses all kinds of rice
dreams. Refuses follow-up soy formula. I'm concerned about her lowered
protein, vitamin d and calcium intake now that she doesn't have a milk source.
When I use juice, I am giving her calcium-enriched orange juice, but obviously
no protein in that. Can anyone suggest something else?
Thanks,
Kim/mom of Lindsay (24 months)

Thank you for the information on the archives. I have a son with autism and
have recently just discovered the NIDS list and the web site and am eager for
more information. I have no desire to attack anyone, I am just seeking
information in an attempt to help my son. (4.10 years)
Hello,
Welcome to the NIDS list. We look forward to your participation here.
Please take a moment to review this message.
Since this is a very young list, message activity is still relatively low, but
we expect that to change in the near future. You may wish to visit the
message archives at:
http://www.onelist.com/archives.cgi/NIDS
This is a forum for information and support for families affected by Neuro
Immune Dysfunction Syndromes. As such, flaming or personal attacks
have no place here and will not be tolerated.
To unsubscribe from this list, go to the ONElist web site, at
www.onelist.com, and select the User Center link from the menu bar
on the left. This menu will also let you change your subscription
between digest and normal mode.
Please visit the NIDS related websites:
NIDS Medical Advisory Board website: http://nids.net
MAT (Medicine for Autism Today) website: http://mat.org
Thanks,
Sandy

Hello, I would like to try me son on the omega-3. He is small for his
age (70) pounds. If anyone knows the dose he should take please e-mail
me with it. thanks in advance! Lois

Congenital rubella is the term for medical problems in a baby born to a
mother who had rubella (German measles) during her pregnancy. This often
includes deafness and heart defects. There was a major outbreak in the mid --
60's leading to an increased concern to vaccinate women of childbearing age.

Dr. Goldberg's comments are indicated by "drG".
My comments/responses, by "Tc".
Date: 24 Mar 1999 19:24:10 -0000
To: NIDS@onelist.com
From: office@...
Subject: [NIDS] HSV and . . .
drG: Dear Teresa, et al... thanks for your reply. A very positive
reputation precedes you (I have enjoyed past posts forwarded to me by my
wife)...
Tc: thnx for the complement.
drG: In regards to the HSV question, while clearly the response to
Zovirax (and fall back off) has helped show there "must be something
Herpes connected", data so far would question the probability of... HSV1
or HSV2 infection, versus the likelihood of some other Herpes virus or
related virus probably "reactivating" or remaining activated due to a
"stressed" / dysfunctional immune system.
Tc: I agree that viruses other than HSV1 or HSV2 are likely to be
within the CNS and etiologically significant in some autism-spectrum
kids. HHV-6 is a leading candidate, and a growing number of parents are
reporting elevated anti-HHV6 antibodies in their child's immune-panel.
Varicella, CMV, EBV, and measles are other candidates -- with each
having virus-specific "peculiarities" that might help us understand the
wide range of symptoms and traits seen in autism spectrum kids -- even
as we keep in mind that some autism-spectrum kids do not have CNS
viruses and subsequent auto-immune processes.
drG: This may best fit "Britishö concept of a myalgic-encephalomyelitis
(which seems to be a nice way to say a smoldering / low grade viral or
immune process û not the typical encephalitis expected of a full viral
infection). Recently, I have been seeing even increased success with
Valtrex, furthering the implication of HHV6, HHV7, etc.
Tc: I agree. The concepts of "smoldering" virus and subclinical
encephalitis (eg, H Rotbart re: coxsackie) have significant
ramifications for some parents of autism-spectrum kids -- especially if
and as local pediatricians begin to appreciate the usefulness of
thorough immune-panels and *various* models of autism causation.
drG: The issues re treating a child at 15 or 18 months of age would
certainly be worth exploring, as in reviewing records, their are obvious
illness points (in some records) where I would heavily suspect a
"virus," particularly a poor response to initial exposure of HHV6
(common 15 - 18 months old)
Tc: I explore some HHV6 possibilities in a webpage (with many citations)
at:
http://www.jorsm.com/~binstock/hhv6-fs.htm
Tc: I recently placed a "mini-paper into the autism-list and GutGroup
regarding a link between EBV and Papillomavirus and Myelin Basic
Protein. It turns out that EBV and Papillomavirus share a sequence
similarity with a portion of MBP and thus could participate in the
launching of anti-neuronal autoimmune processes in a child who had both
EBV and Papillomavirus; and I would expect that the various effects of
those two viruses would be magnified in a child who also carried HHV6 or
other immune-affecting viruses.
The conference in Bethesda sounds quite exciting.
Teresa

Congenital means "born with it" and Rubella is German measles.

Hi,
Can someone tell me what is congenital rubella?
Cornelia

Dear Listers;
Since our topic is NIDS after all, I thought it might be interesting
to share our experiences with our kids clinical signs of immune
dysfunction.
For my son, the first labs run by Dr. G. showed, among other things,
extremely elevated levels of Alpha Interferon, along with a massive
list of allergies. Spect scan showed decreased function in all the
places one would expect; parts of temporal, pareital and occipital
regions. Frontal regions were NORMAL - more evidence of why Ritalin
and similar drugs are usually the wrong choice for our kids - they
actually further shut down the very regions that are already
functioning sluggishly. In our case, a child psychiatrist
(before we met Dr. G.) prescribed Dexedrine. Within a week my son
had his first and only seizure. That was the end of that.
The SSRIs that Dr. G. has prescribed have all been very helpful, and
some work better than others (depends on the child), but require
patience to adjust the dosage properly for each individual child over
a period of time. I think they are a very important, if not
essential, part of trying to mitigate the symptoms of our kids
disorders, at least right now until treatments for the underlying
causes are discovered.
The first marked improvement occurred in my son after we removed the
offending allergic foods from his diet. For a very long time prior
to this I had identified cyclic regressions and improvements in my
son, the cycles would run days or weeks, where he would steadily make
improvements and then go into a tailspin, with a regression in
behavior, responsiveness, everything. From the day that we got the
allergy reports and implemented a restricted diet, the major cyclic
regressions disappeared. While we still have up-and-down periods of
overall behavior, attitude and functioning, the major swings are
GONE.
Those of you who are comfortable doing so, won't you share your
experiences? It would be most interesting to hear what commonalities
there are in our children.
Best wishes,
Sandy
sandy@...

i am surprised how this subject heading of lovaas outdated has continued for
so long... where is the focus?

If the child whose family got counseling "lost" his ADHD
characteristics that easily - then what happened to his biochemical
abnormalities? Maybe he never had any? Maybe his behavioral
problems from "stress" or whatever should never have been diagnosed
as ADHD. Maybe a certain percentage of kids with "ADHD" have
problems that stem from the family environment. Or maybe counseling
actually helped the families cope with the childs behavior instead of
exacerbating it.
Does that mean that ALL kids with ADHD have "poor" family
environments?
BZZZZT! Wrong! This theory is FULL of holes.
Geeze, people complain that Dr. Lovaas' sample of 19 is too small. A
sample of ONE is nothing but anecdotal.
Looks like Bettleheim's trying to make a comeback .....
Sandy

In a message dated 4/23/99 1:21:25 AM GMT Daylight Time,
colin.holloway@... writes:
....I am glad these people have helped you to 'cope'....I hope that you
continue to learn, from Phd's in ABA such as Gary La Vigna and ALL of the
people whom are qualified (can we talk MA at least(!! ) for our
children???)....there are people specifically ....Doctors of ABA...WHY should
ANY parent accept ANY less from a consultant for their child..or
......????????????????????.Liz Lucy.

Hi all,
Over the last few weeks this list has gone in a rather negative direction.
We all want what's best for our children, and are working very hard toward
that purpose. I respect and appreciate different views, but opinions should
be expressed without criticism of others. Let's get back to helping and
encouraging each other with our daily challenges. Here is a touching poem to
help remind us all to look at the glass as half-filled! Kindest regards to
you all, Aimee
THE MOST BEAUTIFUL FLOWER
The park bench was deserted as I sat down to read
Beneath the long, straggly branches of an old willow tree.
Disillusioned by life with good reason to frown,
For the world was intent on dragging me down.
And if that weren't enough to ruin my day,
A young boy out of breath approached me, all tired from play.
He stood right before me with his head tilted down
And said in great excitement, "Look what I found!"
In his hand was a flower, and what a pitiful sight,
With it's petals all worn -- not enough rain, or too little light.
Wanting him to take his dead flower and go off to play,
I faked a small smile and then shifted away.
But instead of retreating he sat next to my side
And placed the flower to his nose
And declared with overacted surprise,
It sure smells pretty, and it's beautiful, too.
That's why I picked it; "here, it's for you."
The weed before me was dying or dead.
Not vibrant of colors: orange, yellow or red.
But I knew I must take it, or he might never leave.
So I reached for the flower, and replied, "Just what I need."
But instead of him placing the flower in my hand,
He held it midair without reason or plan.
It was then that I noticed for the very first time
That the weed-toting boy could not see: he was blind.
I heard my voice quiver; tears shone in the sun
As I thanked him for picking the very best one.
"Your're welcome," he smiled, and then ran off to play,
Unaware of the impact he'd had on my day.
I sat there and wondered how he managed to see
A self-pitying woman beneath an old willow tree.
How did he know of my self-indulged plight?
Perhaps from his heart, he'd been blessed with true sight.
Through the eyes of a blind child, at last I could see.
The problem was not with the world; the problem was me.
And for all of those times I myself had been blind
I vowed to see the beauty in life, and appreciate every second that's mine.
And then I held that wilted flower up to my nose
And breathed in the fragrance of a beautiful rose.
And smiled as I watched that young boy, Another weed in his hand,
About to change the life of an unsuspecting old man.

Thanks, Sandy for the kind words. I have a strong interest in children who
have been diagnosed with a Pervasive Develoment Disorder as I am constantly
looking for innovative techniques to help families in their daily struggles.
Obviously, it has become a very rewarding area for me as I have found the
studies of Dr. Ron Leaf, Catherine Maurice, and other followers of ABA, very
effective in implementing coping stategies and successful learning in these
children. I realize that my knowledge is indeed limited but our overall
success rate todate is impressive. I look forward to sharing ideas with
many of the other participants on this e-mail list.

FEAT DAILY ONLINE http://www.feat.org Families for Early
NEWSLETTER WORLD EDITION Autism Treatment
FEAT@... M.I.N.D.: http://neuroscience.ucdavis.edu/mind/
"Healing Autism: No finer a cause on the planet"

Dear Listers,
I think some clarification would be helpful here. ABA (applied
behavioral analysis) is the technical term for teaching using
behaviorally based principles (ala Skinner's "operant conditioning").
Dr. Ivar Lovaas at UCLA was the first to use ABA to try to teach
autistic children. It was found to be quite useful and was a highly
effective teaching technology for these children.
Now, when an ABA program is used to teach autistic children,
it has come to be called a "Lovaas" program.
Sandy

Hi to the NIDS List!
I am new to this list, and have been reading daily, quietly, as an observer.
I often do so when joining a new group. As a newcomer, I must say, I am
struck by the "defensive" verbage by some members. If a particular program
works for some families, thank God. Hurrah!!! No need to throw stones if
it happens to "old" or "out of date" as seen by different locales & medical
professionals. I like to read about ALL new methodology, do MY OWN
research, take what I see as viable for OUR situation & location, present
facts & have a discussion with our medical/psych service providers, and
make informed decisions, in the best interest of all concerned. As a parent,
counselor, child advocate, and aunt to many of these kids, I know we can't
all fly to S. CA whenever we might choose. I also know the frustration &
need for "I'M DOING THE RIGHT THING" sense that many of us feel
and KNOW on a daily basis. We question ourselves about everything,
much moreso than other parents of "normal" kids. So, I am not even
condemning or pointing a finger, just making a biased observation of what
I am seeing so far on this list. I hope each of you out there are well and
healthy today, and that our kids find the year 2000 more knowledgeable
and understanding of there differences.
Sincerely, Paula

Curious as to why you say "Forget Lovaas - way out of date"? Have you read
the medical statistics on this type of therapy? Talked to parents who are
practicing the Lovaas Method? I think that you would quickly change your
opinion. If anything Lovaas is very up to date!
Yes, the Lovaas Method is a very controversial topic. It appears as though
many people tend to cling to the idea that this therapy uses aversives but I
must advise that this type of thinking is way out of date.
The Lovaas Therapy is extremely beneficial to MANY children with Autism.
Please note that this is not to discredit your post as I believe that you
mentioned many good points (ie. Greenspan's Floor Time). It just scares me
to think that someone will not try the Lovaas method based on old beliefs. I
believe that if one researches this method extensively, one could change
their opinion and might give the Lovaas method a try!!!!! I really believe
that there is not one answer for all of our children, just as I am sure
there is not just one cause.
Congratulations on the success of your son. I hope that he continues to do
well. It is always nice to hear positive news!!!~

Dear Sandy.
Whoa! Droppin' a 'get-lost' hint. But I thought this list was not
moderated? It seems a little unusual to put someone's posting content up to
a straw vote for a list that's not moderated. Is there a problem with any
of the posts I've made so far? I haven't heard of any complaints on
content.
So what does it take for me to lose the "input" vote you're taking and be
asked to leave? Are you looking for a simple majority of subscribers, or
perhaps would just a loud handful do it?
Why don't you want the press around, Sandy? The press can be a tremendous
asset to the autism community. But if we're going to defeat autism, we will
need to be supportive of eachother.
-lenny schafer
Izak's dad

I noticed that Lenny Schafer has been kind enough to forward one of
the FEAT News feeds to the NIDS list. I was wondering though,
whether most subscribers here are already receiving FEAT news.
I would appreciate if list members could let me know as to whether
you feel that receiving the FEAT posts here is beneficial to you, or
is a duplication of information you already receive.
Your input is appreciated!
Thanks!
Sandy
sandy@...

Thank you again Martin,
So, in any event, the way I see it, they would be obliged to pay for
treatment if there is an allergy, or if there was a birth injury. Is it
possible the HMO's are trying to pin a cause on genetics? So far I've got
nothing but a lot of shoulder shrugging from them.
~Marlene

I work with a family who has a four year old son with Autism. After many
different attempts with all kinds of medication, diet, etc., he was put on
Prozac. In a week the self-injury has decreased, he is calm and has less
tantrums. He has even improved with eye-contact. I would like to see
language skills increase as he continues on with this medication.

The long awaited NIDS (Neuro Immune Dysfunction Syndromes) Medical
Conference is now a reality!
This 2-day event for both parents and professionals is scheduled for
June 12th and 13th, 1999, in Bethesda MD.
The NIDS Medical Conference is sponsored by MAT: Medicine for Autism
Today. More information on this event can be found at the MAT
website: http://www.mat.org or at the NIDS Medical Advisory Board
website at http://www.nids.net.
See you in Bethedsa in June!
Sandy
sandy@...

The e-mail just posted from this address was sent by my husband John, by the
way. He hadn't seen the introductory notice saying that there should be no
personal attacks. Sorry.
Sharrill Hemry

It appears from the messages that 'Virri" is sending that her or she is
actually a lawyer trying to stir up concerns about Dr. Goldberg and thereby
generate clients. Trolling for clients and fabricating lawsuits by spreading
unsubstantiated allegations is of course a violation of legal ethical standards
(and the law in most states), which is undoubtably why 'Virri' isn't identifying
themselves.
By the way, 'Virri', our insurance companies are covering Dr Goldberg's
treatments and prescriptions. They wouldn't do so if either legal or ethical
problems existed. Now please crawl back under your rock.

Dr. G is the most dedicated, competent, caring, and well-informed dr. we
have met. And we have met A LOT of so called experts on Autism. The time
he spends with his patients, and their parents, answering their many
questions, is totally unheard of in medical practice.
He also is the only one who has actual solutions to offer that are based
on sound medicine not hazardous trials.
People who critisize him must be either totally unfamiliar with him or,
more likely have some ax to grind...
Let's not get distracted from our fundamental objectives here: help our
kids and spread the message that there is a new form of autism out there
that is treatable.
PYD

Dear NIDS-listers,
I apologize that all of you were subjected to the SPAM mailing sent
by thollenbeck@....
This user has been banned from the list.
Spam in NOT allowed on this list, anyone sending Spam to the list, or
sending spam designed to appear that it came from the list, will be
banned and reported to onelist immediately.
Sorry again for the inconvenience.
Sandy

Dear Oz Listers,
I have just found out it may be a possibility for us to visit the States
sometime this year and I would love to make contact with any Australians
who have already been to see Dr Goldberg over there already.If you are
willing to share your experiences with me I'd be very grateful.
Regards,
Robyn

The Amazing Formula That Sells Products Like Crazy
http://www.higherresponse.com/track/t.cgi/8323
It's crazy.
I stumbled across a very simple formula anyone can use to sell
products like crazy. If you're interested in selling your products by
the hundreds or even thousands, listen up:
I've bought a number of Internet marketing products. But this is
different. Here's what I really liked about it:
Item One: Here is an exact formula for you to use to find out exactly
what you will need to be successful as far as marketing is concerned.
Scientific formula.
Item Two: How To Generate Traffic: Here's what almost no one is telling
you about making money with the six top traffic generation methods.
Item Three: A crash course in the subject of sales letters that make
money like crazy!
To find out more about this amazing formula, go to this site:
http://www.higherresponse.com/track/t.cgi/8323
Best wishes,
Troy Hollenbeck

Mrs. Goldberg,
I can honestly say that after my last phone consult with Dr. Goldberg I hung
up the phone and with tears in my eyes told my husband "thank God for Dr.
Goldberg". I appreciate the sacrifices that both of you have made for our
children. Thank you.
Janelle

I rarely get riled up but a few of the posts have really pissed me off!
As Dr. Goldbergs wife I live the other side of the coin
No, he is not getting rich Do the math, as a regular pediatrician he can see
6-9 sick children an hour. With these kids its maximum of two!!!!!
WE HAVETO MEET THE EXPENSES OF THE CORPORATION HE WORKS FOR. GET IT They dont
care we are trying to help the children. They care about their bottom line. As
a result he has exactly eared LESS each year since he started this.
Forget money, we have 3 children who rarely see us our daughter is getting
married this summer and I realize we have not seen some of our closet friends in
TWO years.
The rewards however are endless The thank yous and prays way override the
critics who have much too say and not much too back it up with. As parents
routinely tell us we must have carved out a space in heaven for ourselves by
now.
I was ill for almost 10 years before Mike got involved in my care. The only
reason I even went along with him going in this direction was I felt if I had
felt as bad as I did what about the children. They had no clue what a normal
brain felt liked and functioned. If their brains felt even half as bad as mine
I couldnt live with myself feeling sorry for them. I am both Dr. Goldbergs
largest supporter and biggest critic as nothing happens fast enough for me.
To the woman whose ex-husband is seeing mine Perhaps you need to get your facts
straight as to what medicines your ex was on at the time of seeing Dr. G vs.
what he prescribed. As I review his charts I am familiar with the case and even
read your lovely letter to Dr. G. without discussing the situation your letter
was unusual! HE DOES NOT DO PET SCANS! Only NeuroSPECT scans at UCLA- Harbor
general. He does NOT get paid for these the hospital does! No one is forced to
see my husband.. There normally is a wait to see him. At my worst Id probably
would have sold anything I owned to get better. At least I know his treatment
works.
He does not decide the price of medicines or get kickbacks from the
pharmaceutical companies. I am actually sick of what people presume, as they do
not walk in our lives.
Finally, Dr. G goes to great lengths to accommodate people. American airlines
has worked closely with us bringing out countless families to see him with their
miles for kids program.
Sadly you guys dont appreciate what he has given up for your children.
Elyse Goldberg

Janelle,
Your school district is in violation of IDEA by claiming that they
won't provide supports "because they can't afford it." Imagine where
our kids would be if every district could make this claim whenever
they felt like it. You may wish to enlist the services of a special
education lawyer or advocate to help you acquire FAPE for your son.
You son should be allowed to be part of his own community and should
be able to attend his home school if at all possible. Your message
indicates that you already know that trucking him off to somewhere
else for the districts "convenience" is not serving your child's best
interests.
Best wishes,
Sandy
sandy@...
On 16 Apr 99 Mom2DnD@... (Mom2DnD@... <NIDS@onelist.com

Janelle,
I have found that computer instruction can be very helpful as
long as it is done in a constructive way. If the child is
perseverating instead of learning from the program, then I would not
let him use that program. You must supervise your child's use of the
computer.
There are a number of useful programs out there that can help teach
your child things he may be behind on, but remember that he is not
getting social interaction out of this activity and so you must be
careful to limit how much time is spent on the computer.
We have done Fast For Word, also Earobics, and some of the Thinkin'
Things series. We had to be careful with some parts of Thinkin'
Things because they had parts that just made patterns on the screen,
and sounds, and he would just doodle with it mindlessly. Not the
desired effect at all.
Sandy
sandy@...

I am wondering what suggestions parents have regarding what type of education
is best for our children. My son is five and in a special ed classroom with
some time spent in regular Kindergarten, always with support. This school is
in another district because our school system is claiming they can not
financially afford to provide necessary supports. I have noticed that he is
picking up some negative behaviors from another child in this segregated
class. I also would like my son to be able to form relationships with
children in our neighborhoood, and I feel this would happen more easily if
he were allowed to be in school with them. I want my son to have these
opportunities and also have the type of instruction that meets his needs.
Dr. Goldberg has suggested that next year we have our son do a half day
Kindergarten as well as computer work at home. What have some of you found
to be successful for you child? Any suggestions you have would be greatly
appreciated.
Janelle

i located Dr Goldberg online while sooking for ADHD doctor for my son's
father. While I don't take my son to him, his dad is being treated with
antidepressants for neuro disorders related to autism in a way (too long to
explain). He started him on Effexor, next is Zoloft and last is Celexa. I
read on another post Dr Goldberg is treating her child with Celexa. This is
a new drug (approved 6/98 by FDA). these are by no means a cure, but have
helped with mood swings, bad behavior and anger. Dr Goldberg had ordered a
PET scan, at a cost of $875, on top of his $385 office visits, phone
consults and faxes are billed at $145. The meds are also very costly. I
am not willing at this time to take my 4 year old (nor can I afford it). He
is doing very well on DMG and vitamins. I am looking into more vitamins.
These drugs are very powerful, and have rendered impotence. I would be wary
of giving such strong drugs to a little child. He also recommended the
GF/CF diet, but trying to get this bull headed adult to get off his milk
addiction is impossible. For more info on the GF/CF diet, there is a
discussion list at onelist, and you can order the book Special Diets for
special kids by Lisa Lewis for about $25, but I notice that it is at Barnes
& Noble on-line for less than $20 (I think $18.99)

You may find www.autism-society.org (the web site of the Autism Society of
America) to be of assistance.

Hi everyone!
I hope you all don't mind, but I have a few more questions. (You all have been
so unbelievably supportive, and we really appreciate it-thanks!).
Does anyone know of any secretin studies or prozac studies going on?
Just curious-does anyone know if Dr. Goldberg has been featured on any of the
national television news magazine shows, such as Dateline NBC?
How does Dr. Goldberg feel about the use of antidepressants or antipsychotics in
these children? (I gather from his site that he's not much of an advocate of
secretin use).
Can I expect Dr. Goldberg to be as aggressive and successful with a MILDLY
autistic child?
Thank you,
Kim

From: msbufkin@...
I am new to the NIDS list and hope someone out there has had my experience.
Our 7 year old daughter has just been diagnosed with PDD. For the past two
years we have been treating her for ADD with Adderall and therapies. We are
entering a new round of evaluations and I was wondering if anyone could give
me some baseline knowledge and questions to be prepared with before we start
this 'evaluations trail' again.
What are the current medication recs? Have they worked for you? What have
been the downsides? I'm hearing something about Secretin. Any experience
with this?
I see quite a few message about diet. Does this really make a difference?
In which instances?
Has anyone used Play Therapy successfully in treating these kids? What
about Light Therapies?
As you can see, we are getting a lot of input from a lot of
'professionals'. As a Mom and Morgan's best advocate, I want to determine
what is the most effective and efficient way to get at this problem.
Anyone have comments or suggestions? I would surely appreciate them.
Michelle

Found on the St.Johns list, comments by original poster (Mitzi Waltz)
included:
Comments, everyone? I think iut's an interesting study, but I'm not
sure about the conclusion. For one thing, SSRIs can also calm down a
dysfunctional sensory system...that could be another reason for their
effectiveness.
==========
For immediate release
March 23, 1999
Contact: Karyn Hede
(919) 684-4148
Georg016@...
ANTIDEPRESSANTS CAN BREAK THROUGH THE WALL OF MANY CHILDREN'S AUTISM,
DUKE RESEARCHERS SAY
DURHAM, N.C. - Many autistic children may actually suffer from a
genetically linked depression that is treatable with antidepressants
such as Prozac (fluoxetine), according to Dr. Robert DeLong, a Duke
University Medical Center pediatric neurologist.
In an article in the March 23 issue of the journal Neurology, DeLong
presents a new hypothesis that about two-thirds of children with the
most common form of infantile autism actually have a treatable,
genetically linked, early-onset form of severe depression. The
argument is based on recent genetic analyses, behavioral studies and
brain chemistry and imaging analyses on autistic children by
researchers at Duke and several other institutions.
The research was funded by the Charles and Sara Goldberg Charitable
Trust and the Duke Children's Telethon.
"Several lines of evidence are now coming together to form a cohesive
picture of the biological basis of a disease that has long baffled the
medical community," said DeLong. "Genetic and brain imaging studies,
as well as a re-examination of the classical symptoms of autism, all
point to the conclusion that many autistic children have an inherited
disease that we know how to treat."
Children with autism appear to be prisoners of their own minds because
they are unable to learn the language or social skills necessary to
get along in the world.
Autism is actually a spectrum of disorders with similar symptoms, said
DeLong. Children who develop autism, usually in the second year of
life, lose the ability to interact with people or their environment
and don't speak or use language, even though many have normal
intelligence.
While some autism is caused by diseases or injury to certain areas of
the developing brain, most cases of autism have no known cause, and of
these so-called idiopathic cases, DeLong asserts that 70 percent now
appear to be an inherited form of an affective disorder, such as manic
depression or obsessive-compulsive disorder.
"Many years ago I noticed that if you look carefully at the symptoms
of autism, they look very much like those of depression and manic
depression," said DeLong. "These children show none or the
cheerfulness or spontaneity of normal children. And they often have
extreme moods swings, tantrums and excessive fearfulness."
DeLong has identified several lines of evidence that together show a
distinct subgroup of autistic children who have a genetic disease that
can be treated with anti-depressive medications.
When researchers examine the brains of children with idiopathic
autism, they find very low levels of the neurotransmitter serotonin on
the left side of the brain in the area responsible for language.
Serotonin is also important in influencing mood and is low in people
with clinical depression.
"In the developing brains of children, serotonin not only acts as a
transmitter of information, but it is also an agent of development
that influences growth in the brain," said DeLong. "When serotonin
levels in the left hemisphere of the brain don't reach a critical
level in early childhood, one might expect to see the symptoms we see
in autism: blunting of the child's cognitive, social and emotional
development."
Studies of people in which the connection between the left and right
hemispheres of the brain are split surgically to relieve symptoms of
epilepsy, so-called "split brain" experiments, show the left
hemisphere is responsible for language and reasoning skills, while the
right hemisphere is responsible for visual-spatial skills, musical
ability and some types of rote memorization. Serotonin levels in the
right hemisphere of most idiopathic autistic children are normal and
their visual and spatial skills are also normal. In fact, some
autistic savants show a type of overcompensation on the right side of
the brain that gives them extraordinary abilities in math computation,
music or artistic skills.
When the researchers studied older children and adolescents diagnosed
with manic depression, they found these children also have greater
visual-spatial abilities and lower language skills, although the
differences were not as great as in autistic children.
All these lines of evidence led DeLong to try treating autistic
children with Prozac and other specific serotonin re-uptake inhibitors
(SSRIs). These medications, well known for treating depression, work
by making more serotonin available to the brain.
In a study reported in the October 1998 issue of the Journal of
Developmental Medicine and Child Neurology, DeLong and his colleagues
showed that when 37 autistic children ages three to seven were treated
with Prozac (fluoxetine) for up to three years, 22 responded well to
the medication, regaining language abilities, becoming more sociable
and losing obsessive compulsions such as fixating on a single object
for hours on end. Of those children who responded to the medication,
all had a family history of a major depressive disease, such as
bipolar disorder.
"It is tempting to say that autism and manic depression are caused by
a defect in the same gene," said DeLong, "and genetic evidence is
beginning to point in that direction."
Recent studies by DeLong and his colleagues at Duke point to a gene
somewhere on chromosome 15 as a potential autism gene. And now several
studies by investigators at other institutions studying manic
depression have narrowed down their search to the same general area on
chromosome 15 as well.
"While we can't yet definitively say that the genes are one and the
same, the evidence is tantalizing, and we expect to have answers in
the near future," said DeLong.
Such genetic studies offer hope of an earlier diagnosis, said DeLong,
and the development of more specific medications to increase the
availability of serotonin in the developing brains of autistic
children offers the hope of even more effective treatment for the
disease.
"Instead of seeing autism as a disease we can't do anything about, we
now see it as treatable, rather than hopeless," said DeLong. "My hope
is that these new lines of research will lead to earlier
identification and earlier intervention to make autism a highly
treatable disease."
Mitzi Waltz * Freelance Writer and Editor

My son also has been following Dr. Goldberg's recommendations on diet and
his entire treatment plan for the last 2 1/2 years. Dr. Goldberg has always
commented that each child is different and that it may not be necessary for
every child to go gluten-free. Since a gluten-free diet is a much more
complicated thing to do, he says try to see how your kid does with just
eliminating the most allergic items (whole wheat and dairy). If that is not
enough to see improvements, then you can go through the trouble of the
gluten-free diet. We saw great improvements with just eliminating the whole
wheat and dairy, so we haven't bothered with the gluten-free. (It would be
much more difficult to get the products as we live in a rural area, and even
finding Rice Dream was a problem.) Maybe your son needs the more strict
diet, but Dr. Goldberg does not want to make it harder for parents, if the
first level of diet adjustment may be enough for their child. He has done
wonders for my son!

But don't give up. I don't know what Dr. Goldberg's current dietary
recommendations are, but when I started with him almost three years ago, I
simply removed whole grain and dairy. I have since gone gluten and dairy
free. The gluten was a big culprit in my son's llife. Removing it has made a
big difference in ability to focus and communicate. This may not be the case
for all children, but some of theses food products can mess up their immune
systems... big time!

I found this on another list and thought you might enjoy it ...
===============================================================
The following is a NEPALI GOOD LUCK TANTRA TOTEM
This tantra totem has been sent to you for good luck. It has been
sent around the world ten times so far. You will receive good
luck within four days of relaying this tantra totem. Send copies
to people you think need good luck. Don't send money as fate has no
price.
INSTRUCTIONS FOR LIFE
1. Give people more than they expect and do it cheerfully.
2. Memorize your favourite poem.
3. Don't believe all you hear, spend all you have, or sleep all
you want.
4. When you say, "I love you," mean it.
5. When you say, "I'm sorry," look the person in the eye.
6. Be engaged at least six months before you get married.
7. Believe in love at first sight.
8. Never laugh at anyone's dreams.
9. Love deeply and passionately. You might get hurt but it's the
only way to live life completely.
10. In disagreements, fight fairly. No name calling.
11. Don't judge people by their relatives.
12. Talk slowly but think quickly.
13. When someone asks you a question you don't want to answer, smile
and ask, "Why do you want to know?"
14. Remember that great love and great achievements involve great
risk.
15. Call your mom.
16. Say "bless you" when you hear someone sneeze.
17. When you lose, don't lose the lesson.
18. Remember the three R's: Respect for self; Respect for others;
Responsibility for all your actions.
19. Don't let a little dispute injure a great friendship.
20. When you realize you've made a mistake, take immediate steps to
correct it.
21. Smile when picking up the phone. The caller will hear it in your
voice.
22. Marry a man/woman you love to talk to. As you get older, their
conversational skills will be as important as any other.
23. Spend some time alone.
24. Open your arms to change, but don't let go of your values.
25. Remember that silence is sometimes the best answer.
26. Read more books and watch less TV.
27. Live a good, honorable life. Then when you get older and think
back, you'll get to enjoy it a second time.
28. Trust in God but lock your car.
29. A loving atmosphere in your home is so important. Do all you can
to create a tranquil harmonious home.
30. In disagreements with loved ones, deal with the current
situation. Don't bring up the past.
31. Read between the lines.
32. Share your knowledge. It's a way to achieve immortality.
33. Be gentle with the earth.
34. Pray. There's immeasurable power in it.
35. Never interrupt when you are being flattered.
36. Mind your own business.
37. Don't trust a man/woman who doesn't close his/her eyes when
you kiss.
38. Once a year, go someplace you've never been before.
39. If you make a lot of money, put it to use helping others while
you are living. That is wealth's greatest satisfaction.
40. Remember that not getting what you want is sometimes a stroke of
luck.
41. Learn the rules then break some.
42. Remember that the best relationship is one where your love for
each other is greater than your need for each other.
43. Judge your success by what you had to give up in order to get it.
44. Remember that your character is your destiny.
45. Approach love and cooking with reckless abandon.
Do not keep this message. The tantra totem must leave your hands in
96 hours. Send copies and see what happens in four days. You will get
a very pleasant surprise. This is true, even if you are not
superstitious.
Now, here's the FUN part...
Send this to at least 5 people and your life will improve.
0-4 people: Your life will improve slightly.
5-9 people: Your life will improve to your liking.
9-14 people: You will have at least 5 surprises in the next 3
weeks.
15 and above: Your life will improve drastically and everything
you ever dreamed of will begin to take shape.

Kimberly,
Which parts of the diet do you find most restrictive?
Other than avoiding dairy and any foods my son was allergic to, and
adjusting his diet away from excessive carbohydrates (hard to do, I
know!), my son eats relatively normally. Can you tell me where in
the web site the diet info is found?
Thanks!
Sandy
On 12 Apr 99 Kimberly D. Ryan (Kimberly D. Ryan <NIDS@onelist.com

Help! I just visited Dr. Goldberg's site and the section on diet really shocks
me! I mean, do ALL autistic children need to follow this diet? Do all of you
have experience with the diet? My neurologist never mentioned this to me. I
must say, I'm somewhat depressed. First, they tell you that your child is going
to have a difficult time trying to lead a normal life, then they tell you she
can't eat practically ANYTHING. What a blow.

Hi Kimberly, My son JJ has Autism and we have 2 dogs. a boxer and a pug and JJ
loves them alot. He will go and lay on the boxer and (Jinx) will just let him
lay on him. Hope this helps! Lois (mom to JJbug)

autistic" and I had a few questions. (I posed a few questions to the list 3
weeks ago, but my mother passed away since and I've been unable to get back to
the list until now).
wondering, however, if it is beneficial to seek out a pediatric psychologist
and/or pediatric neurologist who specializes solely in PDD's.
and to help with her symptoms. She does seem to adore dogs, but I don't want to
make a mistake. I'm concerned she might regress further into her "own little
world." Then again, with her being the youngest in the family, she might feel
somewhat empowered with a dog around. Any advice or experience would be
appreciated. Thanks, Kim/MO

Cita/Reference:
Cristian Prado M.D. and Ismael Mena M.D. Basal and frontal activation neuroSPECT
demonstrates functional brain changes in major depression. Alasbimn Journal1(3):
April 1999. <http://www.alasbimnjournal.cl/revistas/3/pradoia.htm
ABSTRACT
Depressive disorders have increasing prevalence in countries in development
stage in population that suffer a high level of stress (8% of the chilean
population [ Minoletti, A.,Vicente,B., personal communication]). We have
correlated clinical manifestations of Major Depressive disorder (DSM- 4) and
NeuroSPECT findings both in basal conditions and during frontal activation by
means of the Wisconsin Test. NeuroSPECT was performed in 50 patients with Major
Depression; 23 in basal conditions and 27 during frontal lobe activation induced
by the Winconsin Test. NeuroSPECT was displayed as tridimensional images
normalized for volume and compared with an age matched normal database.
Furthermore, there was exact localization of functional impairment by means of a
template of the Brodmann areas that have a behavioral expression. All this image
processing is performed automatically and therefore is highly reproducible. In
basal NeuroSPECT there is significant hypoperfusion with a statistical certainty
of 95% (two standard deviations below the normal HMPAO Tc-99m uptake) in the
following regions: a) orbito-frontal region corresponding to the Brodmann areas
11 and 12, b) there is hypoperfusion also in the Brodmann area 38 in both
temporal lobes. During frontal activation by means of the Wisonsin Test, there
is a significant extension of hypoperfusion in the orbito-frontal area of
Brodmann 12, there is also further extension of hypoperfusion in the right area
38 and in both anterior cyngulate gyri, area 24 of Brodmann. Finally, in the
subgenual area of the anterior cyngulate, area 25 left, there is hypoperfusion
also with high statistical significance. Areas 11 and 12 of Brodmann in the
orbito-frontal region are constituents of the frontal/ subcortical circuit
related to mood and personality. The area 38 of Brodmann corresponds to the
polar area of the temporal lobes and is related with emotional cognitive
correlations. A significant observation in Major Depressive patients is a fact
that the Wisconsin Test paradoxically does not activate frontal function, but it
depresses in a similar manner than the reported for schizophrenia, denoting a
diminution of executive function at a high logical level in depressive patients.
Equally important is the inhibition of function of both anterior cyngulate gyri
and its subgenual area in the left hemisphere (areas 24 and 25) that are
involved with lack of motivation and abscence of reward-punishment behavioral
characteristics of depression. The definition of these aspects of depression by
means of NeuroSPECT are useful in order to define the severity of the clinical
presentation of Major Depression and useful also for the selection of therapy
for this major psychiatric condition.
Keywords: Depression, SPECT, HMPAO, Wisconsin Test, Activation.

Hi! I'm very new to this. My daughter was recently diagnosed "mildly autistic"
and I had a few questions. (I posed a few questions to the list 3 weeks ago,
but my mother passed away since and I've been unable to get back to the list
until now).
My daughter is currently under the care of a pediatric neurologist. I'm
wondering, however, if it is beneficial to seek out a pediatric psychologist
and/or pediatric neurologist who specializes solely in PDD's.
Also, many people have advised us that a dog might be helpful to my daughter and
to help with her symptoms. She does seem to adore dogs, but I don't want to
make a mistake. I'm concerned she might regress further into her "own little
world." Then again, with her being the youngest in the family, she might feel
somewhat empowered with a dog around. Any advice or experience would be
appreciated. Thanks, Kim/MO

HERBS AND INFERTILITY
( The Columbian )
WASHINGTON -- Scientists have uncovered a new worry about some of the most
popular herbal remedies: the possibility that they could cause infertility, or
genetically damage sperm.
Many women who are pregnant or trying to conceive carefully avoid taking
prescription and even over-the-counter medications for fear they could endanger
their chances of a healthy pregnancy.
But herbs and other dietary supplements are advertised as "natural, " with the
implication that they're safe, nondrug remedies. In fact, many powerful
prescription drugs were derived from plants, and many of the herbs sold in
health food stores and supermarkets also can have powerful, medicine-like
actions and side effects.
The new study by researchers at Loma Linda University suggests that the side
effects of some popular herbs St. John's wort, echinacea and ginkgo could
include blocking conception. The study also uncovered suggestions of genetic
damage to sperm, raising questions of whether such changes could cause problems
for a resulting baby.
The test-tube study is not proof that couples trying to conceive should avoid
taking herbs. Indeed, lead researcher Dr. Richard Ondrizek stressed that
laboratory research doesn't always accurately predict what happens in humans.
Nobody has ever tested actual herb users to see if the products concentrate in
their sperm or eggs the key to knowing if there's any risk.
Still, "this is a very important study that could provide important information
to patients suffering from infertility," said Alan H. DeCherney, editor of
Fertility and Sterility, the journal that published the herb study this month.
An infertility specialist says the study reinforces warnings he already gives
couples to avoid such products while trying to conceive, because it's better to
be safe than sorry.
"I do tell folks to stop taking them when they're doing fertility treatment,"
said Dr. Eric Widra of Georgetown University.
Patients constantly ask him if "there isn't something I could go to the health
food store and get that's going to help me," he said. "They think natural is
good."
Even aside from the herbs now being questioned, some herbal products contain
hormones such as estrogen that raise fertility questions, he notes.
And some herbs have been used for centuries to cause abortions.
The Loma Linda researchers subjected four herbs to fertility testing similar to
the testing that medications undergo, mixing them with human sperm and hamster
eggs. Tested were St. John's wort, which treats mild depression; echinacea,
purported to strengthen the immune system and fight colds; ginkgo, a purported
memory enhancer; and saw palmetto, which can treat older men's enlarged
prostates.
In the Loma Linda testing, only saw palmetto did not damage sperm or eggs.
St. John's wort completely blocked the ability of sperm to penetrate eggs, and
echinacea and ginkgo reduced that ability. Eggs treated with ginkgo "were
visibly degenerated," the researchers reported. Echinacea and St. John's wort
caused DNA changes reducing sperm viability. And sperm treated with St. John's
wort showed a mutation of a gene called BRCA1, a mutation that when found in
grown women is associated with an increased risk of breast and ovarian cancer.
Loma Linda researchers used doses that are a fraction of those recommended on
the herbs' labels. But because no one knows if the herbs that Americans swallow
actually wind up in their sperm or eggs, more research must be done to see if
these herbs really could impede fertility.
"What's most important about this study is it illustrates something that gets
lost in the discussion of herbal preparations," Widra said. "Despite an apparent
high degree of willingness among people to try these things, there's very little
science to back up their safety."
Copyright 1999 The Columbian Publishing Co.
LAURAN NEERGAARD, Associated Press, HERBS AND INFERTILITY., The Columbian,
03-26-1999, pp Front Page.

I read this on another list... Distributors of these products are not happy but
consumers have the right to know!
Elyse
http://www.mlmwatch.org/04C/Mannatech/evans.html
MLM Watch Home Page
Mannatech Consumers,
Investors Get Two Tales
David Evans
©1999 Bloomberg, LP
March 5, 1999
Mannatech Inc. tells consumers scientific studies show its nutritional
supplements are safe, promote good health and are even covered by a health
insurance plan.
Investors get another story. In documents for its initial public stock sale last
month, Mannatech told potential buyers it doesnt know if its products are safe,
or even if they work.
Stephen Boyd, a physician who is Mannatechs international medical director,
praises its supplements in a recorded message for prospective customers. He says
the products facilitate the bodys ability to heal itself and are inherently
non-toxic.
Coppell, Texas-based Mannatech warned in the share-sale prospectus, however,
that there is no assurance its products, even when used as directed, will have
the effects intended, or will not have harmful side effects. Why are they
telling consumers one thing and investors another, asked Stephen Barrett, a
medical doctor and chairman of Quackwatch Inc., a not-for-profit organization
that monitors healthcare fraud. A company has a responsibility to determine its
products are safe and effective before it sells them. Company executives
declined to comment about the products, which are sold through more than 400,000
independent agents nationwide and in Australia. The company, which has plans to
expand in the U.K. and Japan, had sales of $122.9 million for the first nine
months of 1998.
Mannatechs president, Sam Caster, speaks on a recorded message about a
patent-pending Mannatech product called Ambrotose, which is blended from eight
sugars and costs $39 for a bottle of 60 tablets.
Healing Aid
Ambrotose transcends all forms of malady because it supplies the body with
those unique components that truly allow the body to heal itself, Caster says.
In its IPO filing, Mannatech cautioned investors that its MVP product, marketed
for weight control, contains ephedrine, a substance the U.S. Food and Drug
Administration has linked to heart attacks, strokes and death. There are no
warnings in the companys literature for consumers about MVP.
The FDA, which has received more than 800 reports of adverse events associated
with ephedrine, has proposed banning its sale for weight control.
While Mannatech says it has an eight-member scientific team, its monthly
magazine recently said there are no double-blind, placebo-controlled studies of
the type used by drug companies establishing that its products work. It said it
spent 0.25 percent of sales on research and development between 1995 and 1997,
or about $667,000.
Mannatech offers consumers insurance called MannaCare that reimburses up to 50
percent of the cost of its supplements. It also provides full medical, dental
and vision coverage for premiums of up to $9,120 annually.
Last Resort
The insurance is offered through U.S. Alliance, a Crofton, Maryland, insurer
that said its not licensed in any state. There wasnt an insurer they met with
in the last three years that would reimburse for Mannatech products, said
Walter Nieves, president of U.S. Alliance. Thats why they came to me.
Nieves said he doesnt need a license because his plan is exempt from state
regulation. Regulators arent sure. Maryland insurance regulators yesterday
ordered Nieves to explain why he isnt violating state criminal law that forbids
insurance sales by unlicensed companies. We regard this as an urgent matter
requiring an immediate response, said Dennis Carroll, Deputy Insurance
Commissioner.
Mannatechs President Caster, 48, is no stranger to product promotion or the
inquires of state officials.
In 1991, his Eagle Shield Inc. claimed its Electracat device would repel insects
and other pests by emitting high-frequency vibrations. The Texas Attorney
General disagreed. The device is a hoax and stands on the same scientific
footing as a perpetual motion machine, said Assistant Attorney General William
Goodman, who won a permanent injunction against Caster and Eagle Shield in
Travis County District Court.
Caster agreed to stop selling the Electracat, not make unsupported scientific
claims about any other product and pay $125,000 in investigative costs.
Energy Product
Two years earlier, Caster and Eagle Shield were accused of deceiving consumers
by claiming their Eagle Shield Radiant Barrier was a scientific breakthrough in
home insulation and provided significant savings in energy costs.
The Texas Attorney General got a court order banning such claims after arguing
the product had been available for more than 40 years and that the energy-saving
claims were false. Caster and the company agreed not to make more false
statements, and Eagle Shield filed for Chapter 11 bankruptcy protection.
Caster co-founded Mannatech in 1993 and took it public last month. Nearly half
the 5.3 million shares went unsold at the self- underwritten initial public
offering on Feb. 11. Only 3.1 million shares were sold, half owned by insiders
including Caster.
So who drove up Mannatechs shares from $8 at the sale to 44 ½ two days later,
valuing the company at more than $1 billion?
John Coffee, professor of securities law at Columbia University Law School,
suspects they were so-called day traders, who bought because the stock was
moving up and they thought they could sell for a quick profit. They werent
interested in the fundamentals, he said.
Mannatechs fundamentals include current liabilities that exceeded assets on
Sept. 30 by $11.3 million. Its net tangible book value before the offering was
$493,000, or 2 cents a share.
Sales increased 11 percent in the first nine months of 1998 from the
year-earlier period. Thats down from the pace of 1996 to 1997, when sales grew
67 percent. Earnings fell 3 percent in the first nine months of 1998. From 1996
to 1997, earnings grew 48 percent annually, with profit in 1997 of $10.6
million, or 50 cents a share.
Mannatechs shares closed today at 11 ½, cutting the companys value to $270
million. Access More Information and Services Above
MLM Watch Home Page

Hi - nice to be here. We are looking forward to some high quality
debate on this list.
Some of you may be aware of Sandra Johnson's research into
pigment and autism. We have a website at:
http://personal.atl.bellsouth.net/~sojmed/sara's-diet.html
We believe that an immune response to pigment is
implicated in autism. Sensitivity to food dyes has
been widely reported. Others have found great
improvement on removing colored fruits and
vegetables from the diet, as well as gluten and
casein. The rationale for some has been phenol
a/o salicylate intolerance. For us, the rationale
is a suspected immune response to lutein/cryptoxanthine
a/o betacarotene.
The results are good and our reseach into the
pigment/immune connection continues.
Hoping to be engaged in rigorous debate,
Max & Sandra Johnson-Desorgher
-------
Sara's Diet - a comprehensive dietary approach to autism
http://personal.atl.bellsouth.net/~sojmed/sara's-diet.html

The new "official" NIDS Medical Advisory Board website is now up.
Some parts are still under construction, please visit often to see
what is new!
The site can be found at:
http://www.nids.net
Sandy

Thanks for the information on Mannatech. I gave supplements (phytoaloe) to my
son and his eosinophil count was off the chart. I don't think there was a
problem with the product...just a problem with my son's immune system. But
this is a word of caution to all of you about any type of supplements.
Incidently, he acted weird on flouride supplements too. And really sleepy with
acidophilis (sp?)-type products. Does anyone else have a kid who is
hypersensitive to supplements?? Becky

From the site
http://www.mlmwatch.org/04C/Mannatech/evans.html
MLM Watch Home Page
Mannatech Consumers,
Investors Get Two Tales
David Evans
©1999 Bloomberg, LP
March 5, 1999
Mannatech Inc. tells consumers scientific studies show its nutritional
supplements are safe, promote good health and are even covered by a health
insurance plan.
Investors get another story. In documents for its initial public stock sale last
month, Mannatech told potential buyers it doesn't know if its products are safe,
or even if they work.
Stephen Boyd, a physician who is Mannatech's international medical director,
praises its supplements in a recorded message for prospective customers. He says
the products facilitate the body's ability to heal itself and are ``inherently
non-toxic.''
Coppell, Texas-based Mannatech warned in the share-sale prospectus, however,
that there is no assurance its products, ``even when used as directed, will have
the effects intended, or will not have harmful side effects.'' ``Why are they
telling consumers one thing and investors another,'' asked Stephen Barrett, a
medical doctor and chairman of Quackwatch Inc., a not-for-profit organization
that monitors healthcare fraud. ``A company has a responsibility to determine
its products are safe and effective before it sells them.'' Company executives
declined to comment about the products, which are sold through more than 400,000
independent agents nationwide and in Australia. The company, which has plans to
expand in the U.K. and Japan, had sales of $122.9 million for the first nine
months of 1998.
Mannatech's president, Sam Caster, speaks on a recorded message about a
patent-pending Mannatech product called Ambrotose, which is blended from eight
sugars and costs $39 for a bottle of 60 tablets.
Healing Aid
"Ambrotose transcends all forms of malady because it supplies the body with
those unique components that truly allow the body to heal itself,'' Caster says.
In its IPO filing, Mannatech cautioned investors that its MVP product, marketed
for weight control, contains ephedrine, a substance the U.S. Food and Drug
Administration has linked to heart attacks, strokes and death. There are no
warnings in the company's literature for consumers about MVP.
The FDA, which has received more than 800 reports of adverse events associated
with ephedrine, has proposed banning its sale for weight control.
While Mannatech says it has an eight-member scientific team, its monthly
magazine recently said there are no double-blind, placebo-controlled studies of
the type used by drug companies establishing that its products work. It said it
spent 0.25 percent of sales on research and development between 1995 and 1997,
or about $667,000.
Mannatech offers consumers insurance called MannaCare that reimburses up to 50
percent of the cost of its supplements. It also provides full medical, dental
and vision coverage for premiums of up to $9,120 annually.
Last Resort
The insurance is offered through U.S. Alliance, a Crofton, Maryland, insurer
that said it's not licensed in any state. ``There wasn't an insurer they met
with in the last three years that would reimburse'' for Mannatech products, said
Walter Nieves, president of U.S. Alliance. ``That's why they came to me.''
Nieves said he doesn't need a license because his plan is exempt from state
regulation. Regulators aren't sure. Maryland insurance regulators yesterday
ordered Nieves to explain why he isn't violating state criminal law that forbids
insurance sales by unlicensed companies. ``We regard this as an urgent matter
requiring an immediate response,'' said Dennis Carroll, Deputy Insurance
Commissioner.
Mannatech's President Caster, 48, is no stranger to product promotion or the
inquires of state officials.
In 1991, his Eagle Shield Inc. claimed its Electracat device would repel insects
and other pests by emitting high-frequency vibrations. The Texas Attorney
General disagreed. ``The device is a hoax and stands on the same scientific
footing as a perpetual motion machine,'' said Assistant Attorney General William
Goodman, who won a permanent injunction against Caster and Eagle Shield in
Travis County District Court.
Caster agreed to stop selling the Electracat, not make unsupported scientific
claims about any other product and pay $125,000 in investigative costs.
Energy Product
Two years earlier, Caster and Eagle Shield were accused of deceiving consumers
by claiming their Eagle Shield Radiant Barrier was a scientific breakthrough in
home insulation and provided significant savings in energy costs.
The Texas Attorney General got a court order banning such claims after arguing
the product had been available for more than 40 years and that the energy-saving
claims were false. Caster and the company agreed not to make more false
statements, and Eagle Shield filed for Chapter 11 bankruptcy protection.
Caster co-founded Mannatech in 1993 and took it public last month. Nearly half
the 5.3 million shares went unsold at the self- underwritten initial public
offering on Feb. 11. Only 3.1 million shares were sold, half owned by insiders
including Caster.
So who drove up Mannatech's shares from $8 at the sale to 44 1/2 two days later,
valuing the company at more than $1 billion?
John Coffee, professor of securities law at Columbia University Law School,
suspects they were so-called day traders, who bought because the stock was
moving up and they thought they could sell for a quick profit. ``They weren't
interested in the fundamentals,'' he said.
Mannatech's fundamentals include current liabilities that exceeded assets on
Sept. 30 by $11.3 million. Its net tangible book value before the offering was
$493,000, or 2 cents a share.
Sales increased 11 percent in the first nine months of 1998 from the
year-earlier period. That's down from the pace of 1996 to 1997, when sales grew
67 percent. Earnings fell 3 percent in the first nine months of 1998. From 1996
to 1997, earnings grew 48 percent annually, with profit in 1997 of $10.6
million, or 50 cents a share.
Mannatech's shares closed today at 11 1/2, cutting the company's value to $270
million. Access More Information and Services Above
MLM Watch Home Page

Robyn,
I'm writing an article for my local Autism Society of America newsletter and
have the following paragraph in it about Valtrex (I have two autistic
children under 6, one diagnosed as moderate and one diagnosed as severe):
"Both children were put on a weight-oriented dose of an anti-viral drug
(Valtrex)to target the herpes-related virus that appears to be active in
each of their systems. The children started eating their dairy-free diet at
the same time (mid-December 1998) and what a change! They got brighter
and clearer, understood and complied with commands more readily, my sons
self-stimulating behaviors nearly stopped, and, interestingly, their
previously horrible breath became, and remains, sweet-smelling. My son, who
slept on his bed sideways and always went to bed late, routinely woke up
early, and often fussed in the middle of the night, started sleeping in his
bed correctly soon after beginning this treatment and now sleeps all the way
through the night and, sometimes even sleeps in later than his parents! My
daughter, who had often screamed when she didnt get her way, pretty much
stopped this behavior soon after starting treatment."
I believe the Valtrex was a great help, but I would definitely recommend
going dairy-free, as well as whole-grain/wheat-free (our kids are now both).
As you can see above, we were very pleased with the combination. If you'd
like a copy of my article, once I have permission from it's publisher to
give out more, I'd be happy to send it to you (it includes advice on how to
get them to take their pills!)
Regards,
Sharrill Hemry

Hi everyone. I am interested to hear people's experiences with Valtrex -
both good and bad - and specifically what changes did you see in your
children. We are planning on trying it soon and I'm interested to see how
others have fared.
Robyn

Hi , my on has ADHD , but some proffessionals think he may also have
aspergers
I must say I am very confused as YES from what I have read , and spoken to
people who have aspergers child, it does seem like it but then I also have
to wonder is it just bad behaviour , as the LEA are saying
he was assessed by the LEA and they said they were unhappy to give a
diagnoisis, but the proffessionals I have shown the report to say the whole
report is saying Aspergers
my son is being statemented and LEA want him in EBD unit , I am fighting
them against this, but what if I am wrong, by gute feeling says fight it He
is Aspergers , but I am in a way that who can I get a second appoin from
the local NHS, work along side with the LEA , so are they really going to
help my son , or are they going to influanced by the lEA report
Can anyone advice me on this , I feel completely alone , can I evey win
against a LEA

Kim-
I'm a First Steps Speech therapist in Indiana and I'm seeing a little boy
for an hour three times per week. He is also getting OT two hours per
week, developmental therapy once or twice a week....he's in a playgroup
once a week....there's more...they really tried to have something scheduled
each day of the week. I think any child newly diagnosed should have a
minimum of three sessions of speech therapy per week. My two cents.
Laura Cummins
Changed by an Autistic Child
http://homepages.infoseek.com/~lauracu/index.html
To subscribe to the Autism Unschool e-mail support list:
http://www.onelist.com/subscribe.cgi/AutismUnschool

Hi! My name is Kim and I'm new to this list. 2 days ago, my 23month-old
daughter was diagnosed with "mild autism/asperger's syndrome." I followed the
neurologist's directions and got in touch with the state-funded program here in
Missouri called "First Steps" which I understand provides speech and
occupational therapy and even a preschool, if she
Qualifies. They are in the process of sending me an application. However, the
lady I spoke with there was very unhelpful and actually quite rude to me when I
asked what we could expect in terms of the frequency of the therapies. I
understand that they will need to first evaluate my child, since the spectrum of
autism varies so much and that they will not know exactly how much or what kind
of therapy she's going to need until they do so. All I'm asking is that given
her relatively young age, what are possibilities in terms of how much therapy is
likely to be needed, I mean, is it up to 3 or 4 days a week or once every couple
of weeks-what's the best/worst case scenario? What does anyone know about
family therapy, support groups, especially support for young siblings? My
older daughter is 3 and-a-half, and I believe she could benefit from some
child-focused education about autism. Thanks, in advance, for any
information/opinions anyone can give us.-Kim/MO

Cornelia,
What a frightening experience this must have been for your
family. I wonder if your son's compulsive water-drinking during
these times might be related to a sore or scratchy throat due to
either the virus or the allergic reaction to the pollens? If you
haven't already tried this, perhaps giving an aneasthetic throat
lozenge during an episode might clue you as to whether or not this
type of discomfort is contributing to the excessive water drinking.
Best wishes,
Sandy
On 25 Mar 99 john moisuk jr. (john moisuk jr. <NIDS@onelist.com

Hi,
This List is just the right place for a problem which we have
experienced twice now. I am hoping someone will be able to help us
figure it out and not by personal experience.
Our son John is 26, diagnosed as somewhere in the autistic spectrum of
disease. When he is coming down with a viral (I believe) infection, he
becomes very wired and agitated and has compulsive thirst. Last
Saturday night, he drank water, vomited, drank more and suffered a
convulsion. Falling to the floor, he got a black eye. My husband held
him as he came round from the convulsion. It was a frightening horrible
thing. In the hospital they gave him an IV and made six stitches over
his left eye.
Now, in addition to the infection - a flu which I am also getting
through right now, the tree pollen count here in Dallas is very very
high. All factors, especially oak pollen, combined to set the stage for
this immune reaction. Thirst also characterises his reaction to high
pollen.
Bloodwork done at Baylor showed normal potassium, but low sodium.
John does not normally convulse. He had one convulsion in November
1997, also following a bout of hyponatremia. Then, too, he was battling
an infection, a respiratory virus. On the heels of that episode, he
suffered a concussion when he fell to the floor.
QUESTION:
What metabolic defect could be at play here? Or maybe neurological? We
are in touch with some smart doctors, but I know that parents are smart
too. We just do not know which tests to ask for.
Our interim treatment is to give him salts in his water and also
Gatorade which perks him right up!
Thanks in advance.
Cornelia Moisuk

Does anyone know where the entire text of the NIH report quoting
figures as high as 1:200 for ASD kids? Perhaps someone could post
this to the list?
Thanks!
Sandy

Dear Listmembers,
We've had a flurry of new subscribers lately, and since message
traffic is currently pretty light, new members may wish to visit the
archives. They may be viewed at:
http://www.onelist.com/archives.cgi/NIDS
Sandy

Liz,
Welcome to the list. Since we are a very new list, people are just
finding out about us, so the message traffic is low right now. But
we expect things to pick up shortly - there are many NIDS related
developments that we will be able to discuss here, including an
upcoming conference targeted for mid-June (final details will be
announced here as soon as they become available).
Best wishes,
Sandy
On 25 Mar 99 Lizanj@... (Lizanj@... <NIDS@onelist.com

Hi Sandy ! Hi Folks !
You will remember us from Dr. Goldberg's Tuesday evening chats...
We just registered on this list. Great initiative ! Thank you.