Nids

Hi Susan, Enjoyed chatting with you. :)
My understanding of the immune modulators is they will balance out the
immune system. If they restore the immune system then we wouldn't need the
other meds. First the researchers have to prove these kids have definable
markers. Otherwise they may not gain access as quickly as the adults.
I don't have specific details on the various agents they will be using. In
general though, I see alot of research going on with peptides. The type
depends on what you are trying to address. From what I understand, these
should address the illnesses that NIDS is focusing on.
I would contact Marc Share for help with promoting NIDS.
Cheryl

Hi Trina,
I am embarrassed to tell you I took 20mg of prozac for 5 yrs and just
recently switch with only one day off prozac, to effexor. It has taken
about two weeks for my body to adjust, but I feel great. There is no reason
to wait. My doctor started me right away. I stopped prozac Sunday and
started effexor Monday. It was an adjustment the first 3 days or so, but now
(it's been about 2 weeks) I feel great.
I hope this helps. Feel free to contact me if you need anything.
Denise

Hi Bonnie,
I'll try to put together some things that may make it easier to understand.
Cheryl

folks,
I got this from the feat news. please give your positive feedback:
Anyone having success (or not) with the NIDS Medical Board and Research
Institute (Goldberg) in CA? Trying to decide whether to go to CA from NJ.
Email mkelly@...
Tina M. Hendrix
CureNIDS2000@...
Vice-President, California NIDS Coalition
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

Biol Psychiatry 2001 Nov 15;50(10):743-9 Related Articles, Books, LinkOut
Cytokine effects on cortical neuron MAP-2 immunoreactivity: implications for
schizophrenia.
Marx CE, Jarskog LF, Lauder JM, Lieberman JA, Gilmore JH.
Departments of Psychiatry (CEM, LFJ, JAL, JHG) University of North Carolina,
Chapel Hill, North Carolina, USA
Background: Cytokines demonstrate diverse actions in the brain and modulate
systemic and central nervous system (CNS) responses to injury, infection,
and inflammation. Cytokines in the CNS are elevated during infection and
ischemia, two neurodevelopmental insults associated with increased
schizophrenia risk. We hypothesize that cytokine-mediated neuronal injury
during development may contribute to schizophrenia pathophysiology, causing
subtle alterations in neuronal number and density.Methods: We examined
cytokine regulation of neuronal number in embryonic day 18 rat cortical
cultures using MAP-2 immunohistochemistry. Mixed cultures derived from
frontal cortex were fixed and stained after 48-hour exposure to the
proinflammatory interleukin-1beta (IL-1beta), interleukin-6 (IL-6), or tumor
necrosis factor-alpha (TNF-alpha; 0, 10, 100, or 1000 units/mL).Results:
IL-1beta (maximum effect 35%) and IL-6 (maximum effect 29%) produced
dose-dependent decreases in the number of cells (neurons) immunoreactive for
MAP-2 antibody, suggesting decreased neuronal survival. TNF-alpha also
tended to decrease MAP-2 immunostaining at the highest dose
tested.Conclusions: Our data suggest a role for cytokines in the modulation
of neuronal survival during neurodevelopment, a finding potentially relevant
to schizophrenia pathophysiology. If cytokine-mediated neuronal injury
proves to be a common response to gestational insults associated with
increased schizophrenia risk, the pharmacologic modulation of these
molecules may have clinical utility.
PMID: 11720692 [PubMed - in process]

In a message dated 12/7/01 12:47:32 AM Pacific Standard Time,
alizaratterree@... writes:
sent to our pres in response to offers for helping:
Marc, i think we have a committee here. Why don't you have one person
organizt the rest into a parents handbook editing and final draft committee.
And another for the same for the physicians hanbook.

hello everybody,
My kid is 3 1/2 years. Two months backhelearnt
alpabets, spellings and shapes within a month , but
afterone month he forgot everything whathe learned
perviously and became hyperactive. Can anyone tell me
the reasons for this, is it the thing to get worried
or he canbecome alright after few dayz. Thanks
inadvance for giving me replys,
please let me have reply soon
swapna

Erika,
I don't know if you were aware of the recent lawsuit against BCBS. The
lawsuit took place in Minnisota and BCBS lost.
Not only were they forced to repay the costs to their insured, but they had
to pay the state (I believe) 8 million dollars to reimburse them for what the
state was required to pay out.
I had saved the article on my computer, but lost it when it crashed. Does
anybody else have a link for it?
Sharon

My carrier--CIGNA/Connecticut General---pays for most of the phone
consultation fee
Kate

Erika,
At first I had trouble with Cigna,my insurance company also. And this was eight
years ago before it was recognized that Autism is a medical condition. I too
was told it was not covered because it was a psychological disorder. I wrote
letter after letter with no help. Then I hired an attorney who specialized in
this area. There are court cases and precedence for this. She wrote one letter
for me at the cost of $50 and it was taken care of.
The insurance company tried one more time to not pay. My husband called and was
very nice and got the run around. Then I called and said we have been through
this before. Do I have to contact my lawyer again? I had the check within two
days. They also paid for my ABA consultations, but would not cover the airfare
or the hotel of our consultant.
The insurance companies try to wear you out and hope you will give up. What
they don't realize we have kids who try to do the same thing. We are
professionals in endurance. Don't let either of them win. Hope this helps.
Marcia

In a message dated 12/7/01 12:49:14 AM Pacific Standard Time,
sharnitap@... writes:
as soon as they are available, we will post an announcement to the NIDS list.
Tina M. Hendrix
CureNIDS2000@...
Vice-President, California NIDS Coalition
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

I have blue cross blue shield and in our state, they
have a specific autism exclusion. I was once told
by a BCBS representative that "we don't cover
psychiatric disorders."
Doesn't matter that most doctors agree it is more
neurological. :)
BCBS does NOT cover my telephone consults either.
They also are known to put in quite a bit of our
bloodwork into "review"...
hehe.. Sometimes, when my paranoa runs high, I
imagine that they have a giant flag on my son's
file with a "scarlet A" on it to warn all processors
to put everything into a review... He has allergies?
Lets relate it to autism and put it into review.
He went to the doctor? How dare he! Lets put it into
review... :)
Erika

neuroimmune problems. from soup to nuts, what is occurring in the
brain, the intestines etc.(and specifically!) bonnie L
:) I don't understand it entirely but I am learning.
I do suggest that if you have an hour one evening, to sit
down and go to Dr. Goldberg's PowerPoint presentation on
the theory:
http://www.neuroimmunedr.com/present1/index.htm
As you go through it, some slides may not make any
sense to you because Dr. Goldberg isn't "talking" while
showing you the slide. :) I am fortunate in that I saw
him speak here on the east coast 2.5ish years ago and
so I have some very *very* vague memories of what he said.
I have been impressed with the internet as of late
(yes, I am one of those dreaded "internet moms" that
medical associations are warning doctors about.)
Grays anatomy may now be found on the internet through

10:00am-5:00pm, check in 9-10:am
Tina M. Hendrix
CureNIDS2000@...
Vice-President, California NIDS Coalition
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

TRENDS PREVIEW 1
Immunity and Retroviral Superantigens in Humans
by David L. Woodland
This article will appear in a forthcoming issue of Trends in Immunology.
Posted December 7, 2001 · Issue 116

Our insurance(Cigna) will pay for phone consults at 65%(out of network
coverage rate) but once they payed 100% and another couple times they
deduct $75 dollars off the top as "not coverable". I give up trying
to figure them out.
I would get Dr. Goldberg to call the consults "Complex" to please the
insurance company and resubmit them all. Change all diagnoses to fit
the immune related disorder. Dr. Goldberg, I would hope, would not
have a problem meeting your needs on that.
Good luck,
Mike

Hi,
I put the whole 1/3 tab either in a cereal bar, between a soy ice sandwich or
some other soft cookie and my son chews it right up, no problem. KathyP

How do we go about requesting one of these handbooks
when they are completed?

I have looked into Miss Robens "Ultimate Sweetner", I believe that
it's xylitol. I have searched on the net for info. and have only come
up with positive responses. Does anyone know of any dangers presented
with this sweetener?

How can I help? I live in the Houston, TX area.
Aliza Ratterree

thanks to all of you who have responded with much appreciated offers of help!
Marc Share, our Pres., will be contacting you to work out a situation that
will suit you best, and be most effective for our effort.
you may also contact him at Marc@....
Thanx again!
Tina M. Hendrix
CureNIDS2000@...
Vice-President, California NIDS Coalition
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

The California NIDS Coalition presents:
Autism Spectrum Disorders, CFIDS,
ADD/ADHD, and Learning Disabilities:
"A Medical Epidemic and The Neuro-Immune Connection"
An information session on NIDS (Neuro-Immune Dysfunction Syndromes) and the
scientific link to Autism and Autism Spectrum Disorders(ASD) including
PDD-NOS, ADD/ADHD, Chronic Fatigue Syndrome/CFIDS, Speech and Language Delay,
Learning Disabilities and Social and Developmental Delays.
Featuring:
Dr. Michael Goldberg, M.D., F.A.A.P.
President, Neuro-Immune Dysfunction Syndromes (NIDS)
Scientific and Medical Advisory Board
www.NeuroImmuneDr.com & www.NIDS.net
Dr. Julie Griffith, M.D., M.S., C.M.T.
Northern California Center for Learning and Behavioral Disorders
NO CHARGE TO ATTEND
SACRAMENTO SAN FRANCISCO
Date: Saturday, Jan. 19, 2002 Date: Sunday, Jan. 20,
2002
Location: American River College Location: U.C. San
Francisco
Raef Hall, Rm #160 Health Sciences West,
Rm #303
4700 College Oak Dr, Sacramento CA 505 Parnassus Ave, San Francisco
CA
FREE PARKING
REGISTRATION: by PHONE: (707)538-2193, FAX: (707)537-7629, E-MAIL:
CureNIDS2000@... or MAIL: Ca. NIDS Coalition, 3444 Anderson Dr., Santa
Rosa, CA 95409
You must pre-register. No new registrations will be accepted on the day of
the event. Space is limited, so please register early. Box lunches will be
provided @ $10.00 ea, reserved only through pre-registration (Unavailable
for purchase the day of the event). A confirmation package will be sent to
you upon receipt of registration, including driving directions, public
transit info, parking info, and a campus map.

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

Just want to rmind everyone that we (NIDS Coalition) to get the Physicians
Protocol and Parents handbooks done as fast as we can. if anyone is
interested in helping, please reply.
Thanx!
Tina
Tina M. Hendrix
CureNIDS2000@...
Vice-President, California NIDS Coalition
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

Blue Cross/ Blue Shield states in their booklet that they
will not pay for any costs for 'behavior or learning disabilities'
But they will pay for costs for immune related disorders
While I'm on the subject of insurance, has anyone had any luck
getting their insurance carrier to pay for the telephone consults?
We've been through round one and lost. Our next and only
option is to go throuhg OPM in Wash DC
Any suggestions would be helpful. We're trying to use the
"We will pay for outpatient consultation" in their booklet
as a reason they should pay for the telephone consults.
They say "if we don't state telephone consult, we ain't paying"
Our telephone consults have been paid for 1.5 yrs. But Dr Goldberg's
staff are now submitting the bills under Telephone Consult instead
of Complex Consult .....
Please email sjsmith @erols.com
Thanks!
Doris
in Maryland

I also agree 100 percent with Erika. We've had a lot of success with
alternative therapies, especially NAET/BioSet allergy treatments and
Essential Fatty Acids (specifically Nordic Naturals PRO EFA). My son is five
and currently has minimal issues (slurred speech, some effort trying new
things, difficulty controlling anger). Considering that at two he was
spinning, had lack of eye contact, put everything in a straight line, no
imaginary play, ten to twenty tantrums a day, and just plain looked
unhealthy. I also am reluctant to post on this site because it seems that
there are people who are quick to criticize if you don't agree with Dr.
Goldberg 100%.
We're fortunate and money isn't an issue, but I am one who - though I support
Dr. Goldberg in his efforts - won't be taking my son to see him and I also
won't feel guilty for not doing so.
Diana

For all those concerns recently posted about a lack of sharing of information
and a lack of doctors, I urge you to do what I have decided to do: Get
involved by starting and/or joining a NIDS chapter in your area. Why? This
is what I asked myself about 4 or 5 months ago when someone first suggested
the idea. After all, my child is not a patient of Dr. Goldbergs, I don't
really know all that much about NIDS, and I am SICK of support groups!!! But
recently, after talking via email and on the phone to parents on this list
who are currently involved--you know who you are---I finally got it. The
only way to get doctors in your area and get the help your child needs that
you can afford, is to start a chapter in your area. If there already is a
chapter in your area, that is your way to finding doctors in your area. We
all seem to be sitting around waiting for one man, Dr. Goldberg, to write up
a protocol, organize the country, and save our children. Why not pitch in
and help?
From what I understand, a written protocol plan is in the works. But even
once it is completed, it will still need to be presented to doctors in
various areas of the country. I know you are all concerned about your child.
But if we organize, then you can approach doctors in large numbers and
promise them more patients than just your child. Doctors are much more
likely to listen to a large number of parents than just one.
I know and share all of your concerns. I also know you are all busy. But
now is the time to stand together and fight for our kids. You don't have to
be a huge fan of Dr. Goldberg to get involved. In fact, you don't even have
to like him. But if you believe at all that NIDS might be the answer to what
is ailing your child--and obviously if you are on this list, you must--then
you can and should start by calling the NIDS hotline to see how you can help.
I have lost that number, but I am sure that someone can post that number for
us.
Tracy

Hi Cheryl, you are going to have to quit your day job to keep up with
all these questions.
The immune modulators that Dr.G is speaking of,Peptide T sp?, and
others, will they replace Kutapressin and antivirals? I got that
impression from Dr.G on the chat line last night. Also regarding the
immune modulators that are in trials with adults right now, is it
possible to find out how the trials are going?
And finally, in your opinion what would be the best possible way to
increase awareness of NIDS research, outside of trying to convince
your family doctor to help you, more political pressure, media
coverage, etc.?
Thanks so much
Susan(aka Sparky)

In a message dated 12/05/2001 12:47:27 AM Eastern Standard Time,
gmanluvsjam@... writes:
To All:
This is why we turned to Dr. Goldberg. We were told to come to terms with
the fact that our children have a lifelong disorder called "autism". We were
told to institutionalize them, put them in a group home setting, they would
never be producers in society, etc. As parents to these so called autistic
kids, we have medical conditions. Whether that medical condition is chronic
fatigue, fibromyalgia, autoimmune conditions, OCD, ADHD. We know as the
parent that when we read articles such as the new diagnosis of autism, and
the increase number of kids who are turning up with a diagnosis of tcalled
autistic, something isn't right. Why now? Why not before? Our society is
obviously threatened by something causing this epidemic.
Dr. Goldberg has been treating children and adults for over 17 years. He
dedicates his time to his practice. He has science, logic behind his theory
of medicating. It clearly shows what he is trying to treat/cure with the
blood tests he administers every 45 days or so.
Without hope, love, dedication where would the world be today. Our children
are ill and need medication. The only doctor who has looked at our children
as real children has been Dr. Goldberg. Dr. Goldberg's patients are just
relieved to finally receive answers to ?'s and finally receive proper medical
attention for our illnesses.
Thank God we have open-minded individuals who studied and researched auto-
immune conditions and there relation to autism, asperger's, ADD, ADHD, OCD,
CFS, CDIFS. This is unraveling a world called autism, a world who believes
or did believe that autism was a lifelong condition. I don't believe that to
be true and now we are about to prove it once and for all with the new immune
modulators !!
Michele

Suzanne,
My child was diagnosed with PDD-NOS. I haven't been
able to uncover the etiology. We've tried the
neuro-immune tack and other approaches with our
insurance carrier. They have their own
classifications, depending upon what you are trying to
get coverage for (e.g. behavior modification vs. MRI
or blood tests).
I don't know if I "truly believe" what Dr. G is doing.
I haven't seen him myself, and haven't seen any
statistical data regarding specific improvements in
autistic children. I remain open-minded.
Aliza

Tracy,
We live in Texas, and have CHIP for our kids, which is
Children's Health Insurance Plan. It's is through the
state and Texas Children's Hospital, so they can also
do pretty much what they want, within limits.

All of the tests can be run at Dr G's office. Nick's immunologist refused
to write up the tests too. He thought they were too expensive and stated
that he did not believe Nick had autism/neuro immune condition anyway. I
told him I would leave Nick with him and be back in ten minutes to check if
he had changed his mind. What a waste of time that nutcase was. We were
able to get the tests run by our pediatrician.
Best of luck.
Suzanne
From: gmanluvsjam@...

Aliza,
Most health insurance policies exclude treatment related to autism and
developmental disorders except in states where this is prohibited by law
(and even then sometimes, unless you push it). California has a parity law
that mandates "medically necessary" coverage (AB 88) except for Medicaid,
CHAMPUS and self-insured plan, as Tracy pointed out. Check the link below
for status on mental health parity legislation by state. If your state does
not have such a law, or has a proposed law, contact your state legislators
to voice your support.
http://www.nami.org/update/sparity.html
I know that many people don't like their kids to have the label of
'autism' - but if there is legislation in your state that will help your
child receive services he/she would not otherwise be able to get, then it
should be taken into consideration.
If your state has no such legislation, you can work with your physicians and
therapists to code the claims in such a way that they do not indicate
'autism' or 'developmental delay' in any way. There are other appropriate
codes for services such as OT and speech therapy and for lab tests, etc.
Vicki

Tracy,
If you want to know the medications my daughter
started with, her weight, etc.. I can give you the
name of my psychiatrist who has been very open
to Dr. Goldberg's protocol.
My Email is isoaa@...

My son is seeing Dr. Goldberg for the first time on Friday. I just
came from seeing the immunologist who treats him for asthma and I
begged him to order the tests we need. He spent 45 minutes lecturing
me about "coming to terms with my son's disorder" and "accepting him
for who he is." He looked at the NIDS proposed work-up sheet and told
me in great length why each one was unnecessary and how Dr. Goldberg
was actually evil for getting my hopes up. He said his nephew has
autism and that he knows for a fact that it has nothing to do with
the immune system. Obviously, he refused to do the tests. I'm
devestated....feeling completely hopeless and wondering if I should
even keep our appointment. If anyone has any advice, I would
appreciate it.

Thank god, there is someone else out there that
understands that we want the best for our child but
financially it is impossible especially if you live
across the country. There needs to be some training
of other doctors in all areas so that more kids can
benefit from this protocol. If we are for helping
children iwth autism it should not matter how much
money you have!!

Did anyone see the latest CAN alert? If not and you would like to, let me
know and I will forward to you. Anyway, it was a scientific paper that said
basically that the early signs of autism are poor eye contact, lack of
gestures, and lack of age appropriate play. The paper stated that these
signs could serve as early markers for parents to help early detection. I
have a real problem with that. My son had good eye contact, used
gestures--like pointing--, and played with toys until he was 2 years 7
months. I have video to prove it! This is why I believe in NIDS!!!!!
Tracy

Hi,
That's a question I have too. Why can't Dr. G collaborate with other doctors if
they agree to? This also makes me suspicious. KathyP

RE the posting about getting flack from your pharmacist: I fax Dr. G a list
of the meds that my kids need, along with my pharmacy's fax number. Then he
faxes them his orders for the meds---saves everyone time, and no more flack!
Hope this helps
Kate

Erika,
Thank you for posting such an intelligent, insightful
letter. I have been quietly reading the postings for
several months now. There is no way we can afford to
see Dr. G in California. It's tough enough trying to
pay for our daughter's ABA here in Texas.
If/when a protocol becomes available to us mortals, I
will happily read, appraise, and pass it on to our
pediatrician (who, although probably thinks I'm a nut
case, listens to me and generally acquiesces to my
requests).
On a separate soap box, I think insurance companies
are "getting wise" to us and will start putting
exclusions and limitations in their policies. Our
insurance carrier actually tols us that they don't
cover ANY treatments for autism.
Good luck to all, and thank you especially, Erika.
Please keep posting your insights.
Aliza

I subscribe to his newsletter so I received it in the mail... send me your
address
and I will make a copy and mail it to you.
A-

I also began taking my son to Dr. G, then quit after about 6 or 7 months.
It was the BIGGEST mistake that I ever made. My son has now been back with
him for several years and has come a long way. I truly regret that we lost
a whole year of progress due to my decision.
What everyone needs to realize is that our kids are ill and it takes time to
sort out what is throwing them off. We sometimes expect that the changes
are going to be fast or something isn't working.
I hope that you fully research chelation. If you do I believe that you
won't even consider it.
Cheryl

Thank you, Erika, for your honest and, I believe, fair post. You have
managed to capture my feelings exactly--in both pro and con lists.
When I saw Dr. Goldberg in San Antonio last year, he said something that I
have thought for sooooo long and had never heard another Dr. or even so
called autism specialist say. He said that if our kids were normal once,
they can be normal again! Thank you, Dr. Goldberg! I have been saying that
since my son was first diagnosed! People always look at me like I am crazy
or diluted when I say that.
Having said that, I too have been concerned and turned off by the groupie
like attitude of some parents involved here. But I have now decided that
like is the case in all support groups, you can only change the atmosphere if
you become involved. So I have decided to join up, help out, start up, and
do whatever I can to help the NIDS movement! I do believe in it. But I also
believe that I know my child better than ANYONE including Dr. Goldberg, and
so I MUST be involved in his recovery and that means that we must all
understand what is happening in it.
Thanks again!
Sincerely,
Tracy

Hi Amanda,
Were can I find Dr. Rimland pamphlet?
Sincerely
Regina

I fully recognise that this list is not a safe place where
one can discuss confidential matters. :)
We use Dr. Goldberg. I can understand why others
don't. Some of it deals with matters beyong Dr. Goldberg
himself and some of it is directly related.
First, let me state that doctors are human and it is
their humanity which can often be their weakness.
Reasons we used/use Goldberg:
1. First doctor to recognise that I am not a crazy
mother - yes it is not normal to be on antibiotics for
1.5 years straight, have constantly illness and diahrea
and hemmorroids, and GI issues, and to develop quite
normally for two years, and to have vaccine reactions.
2. I can get all the drugs he prescribes covered by insurance.
Couldn't do that for vitamins and such prescribed by the
DAN protocal
3. When we first started seeing him, he was flying out
here (east coast) which made it much more affordable.
ALas, for reasons I still don't understand, this is no
longer occuring. I still feel as though the communcation
between his offices and his patients is ... not so great.
4.A belief that just because my son has the scarlet A pasted
on his forehead, it does not mean that we turn a blind eye
to medical issues. This attitude among medical professionals
bothers me to now end. I have a good friend whose almost
6 year old child with autism has never had a solid bowel in
his life and has "cottage cheese type looking curds" in his
bowels. When she brought this to the attention of her pediatrician,
he was unconcerned. I believe he said "what do you think you
will accomplish by going to a specialist? You think you will cure
his autism?" Good grief. If that had been ANY OTHER CHILD,
he would have referred them to a GI specialist.
That said, there are cons to using Goldberg.
1. There is not a well planned protocal written. The DAN
manual at least has this. Dr. Holmes has a protocal written.
Dr. Megson has a protocal written. At least, you can order
this protocal at a minimal cost (20 and under I think) and give
it to your local doctor. There isn't a real protocal written for
the NIDS camp. So far as I can tell, it is along the lines of
antiviral, antifungal, and SSRI usage with dietary restrictions.
But... it is rather vague. I mean, one can argue that the bloodwork
ups help determine what and how long but... It is rather vague.
2.Since he can no longer fly to see patients, it is very expensive
to see him. We are at a point where I think he would benefit from
seeing my child IN PERSON (it has been two years) but
time and money do not permit this. His office thought I was nuts
when I asked if he had patients send in video tapes of their children.
I was under the impression that this would be useful. Rather than
spend a 20 minute phone call trying to explain things, I could have him
view 5-10 minutes and we could talk for 10minutes. This idea was
not well received. I find that a little bothersome.
3.My local pharmacy and pediatrician and insurance company are
not impressed. It isn't just a matter of getting Goldberg as a doctor-
you have to get local people on board. My local pharmacist is getting
pissed at me. I actually ended up in a tiff with him last week. He resents
calling Dr. Goldberg's office every month and has informed me that
"that isn't our job." My local pediatrican doesn't like ordering the monthly
blood tests and I am getting all sorts of "vaccines don't cause autism-
its genetic" articles in the mail now. My insurance company won't
pay the monthly telephone consults and they put just about any blood
work under review. This is a major stress in our life.
4. ABA. I don't like Goldberg's stance on ABA and would like to
challenge him to actually go in and watch a few workshops-
perhaps a nice Verbal behavior workshop? Or an advance stage Lovaas
workshop. Whenever this topic comes up on the phone, I just put it
on extinction. :P Of course, I do the same when Goldberg's name comes
up with ABA professionals. The extinction burst is hard to get through with
both parties. LOL!
5. I have current concerns with his hardline stance against chelation and
I haven't heard an office NIDS response to the MT protein study. Doctors
who are supporting chelation and doctors looking into the MT protein study
are a.) intelligent researchers b.) just as caring and c.) may have helped
to
find what is causing this tricky immune issue in the beginning. I think
that
the NIDS group needs to be able to recognise when there might be
breakthroughs and be flexible enough to truly research and explore
other possibilities.
6. I am also a little turned off by Goldberg groupies. The cult like status
that is developing really concerns me. I still maintain that most patients
of
Goldberg don't understand why he is doing what he is doing or why they
are giving drugs, what the side effects are of those drugs, what all those
monthly blood tests mean, etc. I , myself, still don't understand half it
and find that when I ask, like on this list, I don't get responses other
than
"stick with Goldberg". I can see how this attitude might frighten off other
parents looking for a medical doctor.
That said, we continue to use Goldberg because in our case, the positives
outweight the negatives. I am glad to have found a professional to help
with my child's health issues.
Erika

A REMINDER!!!!!!!!
If you ever receive a post that has an attachment, DON'T OPEN IT. IT DIDN'T
GO THROUGH NIDSLIST AND IS A VIRUS. These stupid viruses send them out so
that they look like a normal posting to the list.
Thought I'd remind everyone because I had one in my mailbox.
Cheryl

My son saw Dr. Goldberg in 1999 for about 8 months and then we stopped. I
think some parents/doctors forget that our children are not all alike. My
son definitely has immune problems but he also has stomach problems and the
meds that Dr. Goldberg prescribed bothered my son's stomach to the point
that his behavior was uncontrollable at times so even if it was doing some
good, we couldn't see it.
So we stopped and worked on his stomach which is now under control (not
corrected)so he rarely has any agression and has not had any issues at
school this year. In addition, we are working on his allergies because his
gastro doctor believes some (if not all) of his stomach probs may be allergy
related. We are also looking at chelation (as he has many of the symptoms of
heavy metal poisoning) ...
I respect Dr. Goldberg and all the doctors out there that are trying to help
our children but one doctor cannot see all our children. And the sad truth
is that everyone cannot afford to fly around visiting various doctors even
if they were certain to hold the answer. Dr. Rimland recently published a
pamphlet which summarizes the work of a group doctors and chelation... maybe
Dr. Goldberg could do a similar booklet. Obtaining ABA services were the
same way several years ago...
Amanda

Hi Doris,
I don't know if this is much help, but, My dentist is very cautious about
what goes into ones teeth, and he highly recommended a book called "Root
canal cover up", by George E. Meinic. I looked them up on the web for you
and found a writeup on the book by a Dentist out of Chevy Chase MD ,his name
is Dr. Michael Goldman, he is called Dr. G on his site, weird huh?.
Anyway his # is 301-656-6171 and you can email him at mgold2u@... with
questions. Good luck
Call if you need any more info.
Susan

Hi Erin,
Here is some information that Dr G posted in Feb of this year. It gives
reference to his success statistics.
Suzanne
From: "Dr. Michael J. Goldberg, MD, FAAP" <office@n...
2001 3:33 pmSubject: RE: [NIDS] Digest Number 673
General Posting NIDS list (please feel free to repost . . . )As we come very
close to launching the NIDS effort fully for your children(thanks to the
hard work and dedication of some very dedicated parents andresearchers out
there), the "question" always comes up, what are my"statistics," what is my
"success" rate in the practice. Unfortunately, asI have always explained,
as a clinician, doing things the way I have, it isvery difficult to present
"statistics" based on many, many variablesinvolved. Anything within the
practice is regarded scientifically asantidotal. However, in preparing for
some recent presentations I cameacross a sheet from a visit back east 3
years ago, which actually creates avery valid document / statement for all
of you.At that visit I saw 48 patients. 24 are still with me (as has been
remarkedit would be interesting to look at the 24 who are no longer with
me). Ofthe 24 still seeing me, 7 are "not good enough" Most of these are
childrenwho are doing better than ever predicted or imagined by the parents,
but fora combination of reasons (older age, poor education and rehab
assistance,lack of immune modulators), they are not what I can call
"normalized." Ofthe remaining 17, 10 are FULLY normalized (functioning in
regular classes,academically often at the top of their class, healthy,
bright, "regular"children - usually still on some type of "maintenance"
therapy); the other 7are almost there (will be shortly).Needless to say
these are unheard of statistics or results in the world of"Autism."
Preparing for the NIDS effort to launch, the first 2 - 3 weeks inJanuary,
within the office I have another list of 40 - 50 "normalizing"(already there
or will be) patients seen or spoken too in follow up in thatshort time
period. NONE of these patients have been treated withmegavitamins, multi
supplements, IVGG, steroids, Secretin, Chelation, codliver oil, or ANY of
the many recommendations you all continue to receive.As I have spoken and
written, this has become pediatrics for me, these arechildren, this is a
MEDICAL problem. In the end, ONLY science and medicallogic are what are
going to prevail / work. As I say repeatedly to theparents, IF there
children were born "defective," IF they were ever what theworld still tries
to think is "Autism" this could never occur; as aphysician I could not
"fix" a "presumed" defective brain. As is the focusof current thinking,
you might be able to improve function, but you couldnever expect a truly
normal child, and that is what you are all still toldtoday.Years ago I was
warned "don't say the wrong things to parents, don't givefalse hope.
Thankfully, it is now the other way around. NOT to be told tobelieve in
your children, NOT to be told they have the potential to beregular children
IS thankfully WRONG. Over the years the "myth" of Autism(some undefined,
unknown, congenital, developmental defect) continues todoom your children
and you as parents to accept a "fate," with NO science tosupport what that
really is and WHY they are supposedly doomed to the fatecalled "Autism."
Thankfully, as the years progress, EVERY piece of solidscience support the
idea of an autoimmune, often chronic viral process inyour children, and THAT
does make sense medically, it can be definedobjectively, and it has become
reality. It is time the system focused onthe real crisis facing all of
you, this country, and the world. NOTsomething your children thankfully do
not have.In a short time the NIDS effort will be officially launching a
chance tobring NEW agents, open the door expediently to potentially very
safe,potentially very effective therapies for your children. While I have
becomeuse to ongoing success with what I am doing (it remains difficult).
It isup too all of you however whether this is going to have a chance to
receivethe focus, NATIONAL attention it should, whether we are going to have
a realchance to change that "Autistic" system, the image of how your
children areperceived, how they are treated and educated, in essence create
literally a180 degree shift in medical thinking, educational thinking,
therapyapproaches, or will that system manage to maintain control for
anotherdecade or so. AS noted, thankfully, ongoing research and scientific
factssupport everything I have been saying for many years. When I now
presentscience, clinical logic, and appropriate MEDICAL information to
physicians,therapists, and parents, IT makes sense, it is logical, and it
isscientifically valid.Sadly, as reflected by the recent "discussions" re my
failure to be invitedto the upcoming rally in DC, you are all living in a
VERY "controlled" worldthat wants you (I might add obviously the media and
congress,representatives) to hear what it wants you to, not open to "other"
opinions,ideas (even based on hard science), etc. That world continues to
pursuefunding for "Autism," says it wants to encourage "advocacy" for Autism
(thanvague, UNKNOWN dysfunction) which thankfully, happily as noted,
a"disorder" (as currently understood) your children DO NOT have, CAN
NOThave. As many of you have appropriately begun to ask, WHY is that
systemafraid for you to hear "other" opinions, to have a chance to be
presentedwith medical facts that do NOT support their false conceptions or
ideas.Most important, why continue to pursue ADVOCACY for a disorder your
childrendo not have, a disorder that dooms the world to believing your
children cannot really be fixed. What might happen IF the media, congress
reallyunderstand we could help truly change your children, their futures,
and oursocieties future now? Isn't it time the truth became known? Isn't
it timeyou all demanded science, logic, NOT ideas built around a "mystic" of
someunknown disorder, undefined dysfunction, your children seem to have.
Or atleast, expect that ALL information should be open to you, the media,
andcongress. Fortunately, science, the understanding of "neuro-immune"
hasprogressed such that you're children are going to have a chance in spite
ofthe system, NOT because of it. As a pediatrician, this remains a Very
SADstatement, a terrible tragedy UNLESS we all change this NOW.
Thankfullyit's looking like we will finally be able to do that!! None of
you shouldallow this chance to be missed (it won't come again for many years
IF thesystem continue in its "usual" manner).So, this is IT. Either this
effort succeeds, or it will be many more yearsbefore the system will do what
we can make happen now. We must not letthese old ideas, old "mystics," old
concepts, old prejudices old "politics"stop you're children from having a
chance to truly become children, to havea chance for a truly productive
life. The chance too change this is aboutto be right in front of you. It's
up to all of you to help break down thefalse walls, false information, false
knowledge surrounding your children.(I might add, that as noted on one of
the recent Tuesday night Chats, thechance to make this happen, the evolution
of the necessary science andtechnology, the chance to really change things
now, is NOT based on pennyspent on "Autism" research in the last 6 - 7 years
- think about that!!)With hope for a very exiting 2001Michael Goldberg,
MD(Note: With apologies for my lack of time (primary day-to-day focus
isalways patient care), please approach any posting on this list with the
sametype of skepticism and review. Certainly, this list will continue
toprovide you with an open forum and place to look at any "logical" idea
asNIDS evolves. BUT as reflected frequently, physicians, therapist,
informedparents will take a logical piece of the NIDS approach and evolving
science,and still make what may be very unlike "scientific" presumptions,
etc. Oneof the first lessons in medical school, is how to decipher, look
at"studies" ?? validity, etc. As noted by many recent patient visits,
whenpatients are in contact with relatives with "scientific"
backgrounds,previous research experience, the "credibility" of the multiple
pieces ofpseudo-science and logic you are all presented with rapidly falls
apart!

Everyone,
As I am sure most of you have heard on the news, Comcast has gone bankrupt.
Unfortunately, we were Comcast customers. So, our service is being cut off
tomorrow, Saturday the 1st. So, we can no longer be reached at mont@....
Instead, and until we hook up with a different email service provider, please
send all correspondence to Kevin's work email address,
kmontgomery@.... We are so sorry for the inconvenience. We will let
you know when we get our new home email address.
Kevin and Trina Montgomery

Tracy,
Where do you live in Texas?
Has he had some bloodwork done? Maybe if your son
had positive viral titers, an infectious disease specialist
might be willing to cooperate. Or an immunologist.
I completely understand your financial stress. I know that
many people would be willing to accumulate an unmanage-
able level of debt in this situation. But, as parents,
we have had to recognize that we are preparing
for a different kind of future than most of our friends. We
have had to accept that we need to prepare for
the possibility of a child who may or may not be able to
financially support himself during his adulthood. It does
no good to leave him with a legacy of debt, rather
than to try to arrange for his financial needs to be met,
if he is unable to do that for himself. We can't do that
if we are continually incurring debt. We do the best we
can to balance the present and the future. It's difficult...
and I understand your reluctance.

(please feel free to post this / send this to other newsgroups)
My 6 yr old son was diagnosed with autism/pdd 3.5 yrs ago
and NIDS 2 yrs ago. We're GFCF eggless garlicless and anything
else he's allergic too. We'll be ckg on local environmental allergies
in Jan 2002
Went to the dentist on Thur (Dr Casey Crafton in Ellicott City).
Wonderful pediatric dentist who has experience with behaviorally
challenged kids. To make a long story short, Jacob has decay
and Dr Casey recommends caps/crowns. The teeth affected
are the molars that will come out when Jacob is 11 yrs old.
If the teeth aren't capped, the decay could spread to the adult teeth.
All of this would have to be done under anesthesia as Jacob will only
cooperate to a point :o) Dr Casey is also going to do Xrays and
fill the uncrowned molars with a substance to hinder cavitities.
All of this has me a little 'up in arms'. I've been in contact with
Dr Casey, Dr Goldberg and Dr Layton today.
The crowns will be a mixture of metals to include molybdenum,
copper, iron, nickel, chrominum and sulphur. I do not believe mercury
is used - but the staff is ckg on it.
Jacob's ABA therapist's parents are dentists in Calif.
They recommend gold / enamel crowns due to Jacob's dysfunctional
and sensitive immune system. Gold / enamel is rarely allergic though
much more than the recommended crowns. Dr Casey is ckg into
whether crowns for children can be made with gold/enamel.
Any suggestions ? websites to visit ?
Please email me at sjsmith@...
thanks !!
doris
Millersville MD

Tracy,
Go to www.unlockingautism.org. You can fill out a form to apply for
complimentary air travel for your child and one caregiver.
I hope this helps.
Sharon
Unlocking Autism NE State Representative ...(and mom to Connor and Emmie, Dr.
G's patients)
Unlocking Autism's
Wings for Little Angels Program
"Helping Those with Autism Soar"

This might be something you guys can share with a friend considering
chelation or some other type of treatment. (based on the heavy metal theory)
What is being done to their childrens brains?
Cheryl
Biochemistry 2001 Sep 25;40(38):11433-41 Related Articles, Protein,
Structure, Books, LinkOut
Three-dimensional structure and dynamics of a brain specific growth
inhibitory factor: metallothionein-3.
Oz G, Zangger K, Armitage IM.
Department of Biochemistry, Molecular Biology and Biophysics, University of
Minnesota, Minneapolis, Minnesota 55455, USA.
The brain specific member of the metallothionein (MT) family of proteins,
metallothionein-3, inhibits the growth and survival of neurons, in contrast
to the ubiquitous mammalian MT isoforms, MT-1 and MT-2, that are found in
most tissues and are thought to function in metal ion homeostasis and
detoxification. Solution NMR was utilized to determine the structural and
dynamic differences of MT-3 from MT-1 and 2. The high-resolution solution
structure of the C-terminal alpha-domain of recombinant mouse MT-3 revealed
a tertiary fold very similar to MT-1 and 2, except for a loop that
accommodates an acidic insertion relative to these isoforms. This loop was
distinguished from the rest of the domain by dynamics of the backbone on the
nano- to picosecond time-scale shown by (15)N relaxation studies and was
identified as a possible interaction site with other proteins. The
N-terminal beta-domain contains the region responsible for the growth
inhibitory activity, a CPCP tetrapeptide close to the N-terminus. Because of
exchange broadening of a large number of the NMR signals from this domain,
homology modeling was utilized to calculate models for the beta-domain and
suggested that while the backbone fold of the MT-3 beta-domain is identical
to MT-1 and 2, the second proline responsible for the activity, Pro9, may
show structural heterogeneity. (15)N relaxation analyses implied fast
internal motions for the beta-domain. On the basis of these observations, we
conclude that the growth inhibitory activity exhibited by MT-3 is a result
of a combination of local structural differences and global dynamics in the
beta-domain.
PMID: 11560491 [PubMed - indexed for MEDLINE]

Hi Margaret,
Dr. Julie Griffith, a pediatric Neuroligist in Greenbrae, CA. is on our NIDS
Research Medical Board. She is familiar with NIDS and my 10 yr. old ASD
daughter' is her patient. She is not trained on the NIDS protocol yet, but
works well with Dr. goldberg.
The CA NIDS coalition is hosting a Speaking Engagement featuring Dr. Griffith
and Dr. Goldberg at UC San Francisco Sun 1/20/2002. I am awaiting the
confirmation for the facitltiy today, then i will send out registration forms.
In a message dated 11/20/01 7:24:58 PM Pacific Standard Time,
MMacGregor@... writes:
Tina M. Hendrix
CureNIDS2000@...
Vice-President, California NIDS Coalition
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

Is there a link somewhere that give data on the success rate for Dr.
Golberg's protocal? I've read wonderful things here...I was just
wondering if there is a percentage of children that improve with the
protocal.
Thank for any feedback,
Erin

I will respond to this post. Please no flames. Let me first state that I
have the utmost respect and admiration for Dr. Goldberg. I truly believe
that he is on the right track. However, we have chosen at this time NOT to
see him personally. Besides the fact that we can not afford the plane
tickets to California from Texas, we also can not afford the $450 first
office visit fee which then must be followed up within a couple of months.
Please don't say that I should do everything possible to find the money. We
have spent thousands of dollars on our child and are at the end of all
funding. My husband is a teacher and I am a stay at home mom. We are
broke!!!
Dr. Goldberg has said for us to get the word out. I have spoken to several
Dr.'s who all seem pretty interested and seem to think that Dr. Goldberg is
on the right track. And yet, when I asked Dr. Goldberg how other Dr.'s can
sign on to his protocol, he said he is trying to get funding to make that
possible. WHY? How much money is needed to produce a manual like the DAN
protocol did? I don't quite understand what is going on and that makes me
suspicious. Dr. Goldberg himself can not possibly treat every child in the
world with NIDS nor do I believe he would want to. Yet, he says that we can
not wait for immune modulators to come out to help our children.
Please don't flame me. I am just being honest. If I win the lottery, I will
make an appointment to see Dr. Goldberg as soon as is possible. Of course,
from what I understand, we would still have to wait quite a while for an
appointment. In the meantime, my neurologist has prescribed an SSRI and we
restrict our son's diet. I only wish I could find someone who would prescribe
an antiviral. Any ideas?
Sincerely,
Tracy

Hi All NIDS LIST MEMBERS
This vote is taking place tomorrow, Friday at 10 AM. . Call your Senators
and Congressman.
http://www.senate.gov http://www.house.gov
Tell them to reject the Disipline amendment. Tell them to support the
Federal Governments Full Funding of IDEA.
We need to have our voices heard.
Marc Share
President & Executive Director
NIDS Research Institute and Parent Coalition
JUSTICE FOR ALL -- A Free Service of the
American Association of People with Disabilities
www.aapd-dc.org www.jfanow.org
"ACTION ALERT!! IDEA Full Funding and Discipline
Amendments"
We need a major advocacy push NOW!! Tomorrow conferees
from the House and Senate are meeting to finalize the
Elementary & Secondary Education Act (ESEA). Up for
discussion are two issues of huge importance to the
disability community.
1) Norwood and Sessions Discipline amendments. These
familiar amendments must be opposed!
2) Full Funding of IDEA. The draft legislation includes
language for full funding of IDEA for the first time in the
IDEA's 25-year history. Congress should support full
mandatory funding of IDEA.
A list of all the House and Senate conferees with their FAX
numbers follows. Write a short note to these members of
Congress TODAY!!
A letter to the conferees from the Consortium for Citizens
with Disabilities (CCD), also below, provides more context
to the issues at hand.
The conference meeting will take place tomorrow morning,
Friday, November 30, at 10:00 AM in HC-4 (House side of the
Capitol building). Be there if you can!
Jonathan Young, JFA Moderator
========================
MEMBERS OF THE ESEA CONFERENCE
SENATE FAX NUMBER
Edward Kennedy (D-MA) (202) 224-2417
Chris Dodd (D-CT) (202) 224-1083
Tom Harkin (D-IA) (202) 224-9369
Barbara Mikulski (D-MD) (202) 224-8858
Jeff Bingaman (D-NM) (202) 224-2852
Paul Wellstone (D-MN) (202) 224-8438
Patty Murray (D-WA) (202) 224-0238
Jack Reed (D-RI) (202) 224-4680
John Edwards (D-NC) (202) 228-1374
Hillary Rodham Clinton (D-NY) (202) 228-0280
Jim Jeffords (I-VT) Not Public
Evan Bayh (D-IN) (202) 228-0360
Joe Lieberman (D-CT) (202) 224-9750
Judd Gregg (R-NH) (202) 224-4952
Bill Frist (R-TN) (202) 228-1264
Michael Enzi (R-WY) (202) 228-0359
Tim Hutchinson (R-AR) (202) 228-3973
John Warner (R-VA) (202) 224-6295
Christopher Bond (R-MO) (202) 224-8149
Pat Roberts (R-KS) (202) 224-3514
Susan Collins (R-ME) (202) 224-2693
Jeff Sessions (R-AL) (202) 224-3149
Mike DeWine (R-OH) (202) 224-6519
Wayne Allard (R-CO) (202) 224-6471
John Ensign (R-NV) (202) 228-2193
HOUSE OF REPRESENTATIVES
John Boehner (R-OH) (202) 225-0704
Thomas Petri (R-WI) (202) 225-2356
Marge Roukema (R-NJ) (202) 225-9048
Howard McKeon (R-CA) (202) 226-0683
Michael Castle (R-DE) (202) 225-2291
Lindsey Graham (R-SC) (202) 225-3216
Van Hilleary (R-TN) (202) 225-3272
John Isakson (R-GA) (202) 225-4656
George Miller (D-CA) (202) 225-5609
Dale Kildee (D-MI) (202) 225-6393
Major Owens (D-NY) (202) 226-0112
Patsy Mink (D-HI) (202) 225-4987
Rob Andrews (D-NJ) (202) 225-6583
Tim Roemer (D-IN) (202) 225-6798
==========================
For additional information, please contact:
Leslie Jackson (301) 652-2682
Paul Marchand (202) 785-3388
Katherine Beh Neas (202) 347-3066
Jane West (301) 718-0979
www.c-c-d.org
August 1, 2001
Dear ESEA Conferee:
The Education Task Force of the Consortium for Citizens
with Disabilities urges you to reject the discipline
amendments related to students with disabilities. We also
urge you to meet the federal promise of funding 40 percent
of the excess cost of educating students with disabilities
and to ensure that students with disabilities are part of
any accountability mechanisms adopted by the conferees.
CCD is a coalition of more than 100 national organizations
representing children and adults with disabilities, their
families, service providers and advocates. CCD works to
promote opportunities for children and adults with
disabilities and their families.
CCD urges you to oppose the Norwood and Sessions
Amendments. They must not be included in the final bill.
Rather, the issue of disciplining students with
disabilities is expected to be considered as part of next
year's reauthorization of IDEA.
CCD also asks you to support mandatory full funding of the
Individuals with Disabilities Education Act (IDEA). We
request the opportunity to work with you to develop final
conference language that will ensure that special education
services are adequately funded.
In addition, CCD urges you to ensure that all students with
disabilities are included in the accountability mechanisms
determined by the conferees. Any determination of adequate
yearly progress for schools, local education agencies
and/or States, must include assessment results of students
with disabilities. Furthermore, data about students with
disabilities must be able to be disaggregated from the
assessment results.
Thank you for considering our views.
Leslie Jackson, American Occupational Therapy Association
Paul Marchand, The Arc
Katherine Beh Neas, Easter Seals
Jane West, Higher Education Consortium for Special
Education and/ the Teacher Education Division of the
Council for Exceptional Children
###
=====================
There's strength in numbers! Be a part of a national
coalition of people with disabilities and join AAPD today.
www.aapd-dc.org
=====================================================================
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Study 'Confirms' Secretin Equal to Placebo for Autism Symptoms
[From the National Institute of Child Health and Human Development.]
http://www.nichd.nih.gov/new/releases/aut_sec.cfm
The latest in a series of studies on secretin has failed to show that
giving the digestive hormone to children with autism alleviates symptoms of
the disorder, according to a study funded by the National Institute of Child
Health and Human Development.
The study, which appeared in the November 2001 issue of the Journal of
the American Academy of Child and Adolescent Psychiatry, found that patients
with autism who received a form of the hormone derived from swine showed no
statistically significant improvements in the core symptoms of the disorder
when compared to when the same patients received a placebo. (The core
symptoms of autism involve social and communications skills.) In certain
secondary measures of autism, patients receiving secretin also showed no
improvement when compared to when they received a placebo.
The researchers used porcine secretin, a form of the hormone derived
from pigs, and the form most commonly used in diagnostic tests of the
digestive system. Previous studies have also tested laboratory manufactured
secretin as a treatment for autism. The current study tested porcine
secretin to rule out the possibility that the naturally occurring form of
the hormone might have a different effect than does the synthetic version.
"These results, in addition to those from other secretin clinical
trials, do not provide evidence to support using the hormone to treat the
symptoms of autism," said Duane Alexander, M.D., director of the National
Institute of Child Health and Human Development (NICHD), one of the sponsors
of the study.
Interest in secretin as a possible treatment for autism, a
neurodevelopmental disorder characterized by social and communication
problems and repetitive behaviors and interests, arose from reports of
children with autism whose symptoms improved after receiving a single dose
of the hormone. Secretin is routinely given during tests to diagnose
intestinal ailments, but its safety and effectiveness in treating autism
were not known. Since 1999, more than a half dozen studies examined whether
or not secretin could reduce symptoms in children with autism, with little
evidence of benefit. Varying the doses of the hormone and giving it on more
than one occasion have not proved useful in treating the disorder.
"Our study reiterates the need to perform careful studies of any new
treatment--even one that appears promising--before routinely prescribing it
to patients," said the study's first author, Thomas Owley, M.D., Assistant
Professor of Child and Adolescent Psychiatry at the University of Chicago.
The study, conducted at sites in Illinois, California, and Utah,
included 56 children with autism, ranging from age three to age 12. The
children met the autistic disorder criteria for two scales used to measure
the "core" symptoms of autism, the Autism Diagnostic Interview-Revised
(ADI-R) and the Autism Diagnostic Observation Schedule (ADOS). The core
symptoms of autism pertain to social and communication skills. The
researchers confirmed the diagnosis using the DSM-IV criteria, currently the
standard for diagnosing autism from the American Psychiatric Association.
Children who did not meet the requirements of all three scales did not
participate in the study.
Children were randomized to receive either an intravenous dose of
secretin, followed by a dose of harmless saline (salt) solution four weeks
later, or an intravenous dose of saline, followed by a dose of secretin four
weeks later.
The children went through detailed evaluations before receiving
treatment, and then every two weeks, to see if their symptoms of autism
showed any change. These evaluations continued until eight weeks after
treatment, to ensure that the researchers would detect any positive effect.
Using a change in the ADOS social-communication score as a primary
measure, researchers found no statistically significant differences in the
group when they received secretin versus when they received the placebo.
Assessments of secondary measures showed no treatment effect at all between
the secretin and placebo groups. The results were the same eight weeks
after the treatment.
None of the five controlled clinical trials published on secretin,
either in the porcine form or in the synthetic form, given at varying doses,
have shown any improvement over the placebo in symptoms of autism.
Open label studies -- those in which researchers know what they are
giving to the patients - comparing secretin with the saline solution, have
suggested that some improvements might result when secretin is used in
patients with autism. The current study was "double-blinded," meaning that
neither the patients nor the researchers who treated and evaluated the
patients knew when the patients received the secretin or the placebo. The
purpose of studying a treatment (secretin) against a placebo (saline) in a
double-blinded design is to assure objectivity in the evaluation of a
person's response to a medication by eliminating any bias that might be
caused by the expectations of the participants. Scientifically, a
double-blinded, placebo-controlled design is considered optimal in
investigations designed to determine whether a treatment is effective. This
study also used a cross-over design, in which the same patients are
evaluated on placebo and treatment, rather than comparing one group
receiving treatment and another receiving placebo. Because of its objective
nature, the study provides strong evidence that the use of secretin does not
improve autistic symptoms and behaviors. However, it is not possible to say
from such a relatively small study whether or not there may be a small
sub-group of autistic patients who may experience some benefit from
secretin.
"This multi-site study analyzed possible changes in autistic symptoms
based on very well accepted measures," said Laurence Stanford, Ph.D., a
program officer in NICHD's Mental Retardation and Developmental Disabilities
Branch.
"The study results reinforce the findings of other controlled clinical
trials on secretin that, for most people with autism, the hormone is not an
effective treatment." The study was conducted as part of the Collaborative
Network on the Neurobiology and Genetics of Autism, supported by the NICHD
and the National Institute on Deafness and Other Communication Disorders
(NIDCD), both parts of the National Institutes of Health (NIH), the
biomedical research arm of the federal government. Additional support for
the trial came from the National Institute of Mental Health and the National
Center for Research Resources at the NIH, and from the University of
California-Davis Medical Investigation of Neurodevelopmental Disorders
(MIND) Institute.
NICHD publications, as well as information about the Institute, are
available from the NICHD Web site, http://www.nichd.nih.gov, or from the
NICHD Clearinghouse, 1-800-370-2943, e-mail NICHDClearinghouse@....
Tina M. Hendrix
CureNIDS2000@...
Vice-President, California NIDS Coalition
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

Reprinted from ScienceDaily Magazine ...
Source: NIH/National Institute Of Child Health And Human
Development
Date Posted: Thursday, November 29, 2001
Web Address: http://www.sciencedaily.com/releases/2001/11/011129044858.htm

I am so glad I found this group. I made an appointment today to see
Dr. Goldberg-can't get in to see him until summer, 2002. It was
suggested to me that we try to get a local doctor to order the tests
for us (because Dr. G's office doesn't accept our insurance or
medicaid). Does anyone here know an open minded doctor in the Kansas
City area? Also, where can I access the protocol to share with
doctors here? any help or advice would be appreciated.
With thanks,
Erin

This is a good example of why we need to do the NIDS studies. They're
beginning to clue into the fact that something is going on. The problem is
that they always want to focus on one little piece instead of seeing the big
picture. Without our studies we are going to keep seeing all these studies
that are never going to come to a conclusion that will help all of our kids.
We know that food allergies are not causing autism, ADHD, etc. We also know
that when are kids have a dysfunctional immune system.....THEY ARE REACTIVE
to certain foods.
Cheryl

Annals Of Allergy Vol. 72, May 1994 "Foods and Additives are common causes of
ADHD in Children
Ännals of Allergy Vol. 73, Sep 1994 "Role of food allergy in serous otitis
media"
There are a number of articles that have been written over the years linking
food to spectrum disorders. Kathy NIDS-NNY

Exp Biol Med (Maywood) 2001 Mar;226(3):164-76
Superantigens: the good, the bad, and the ugly.
Torres BA, Kominsky S, Perrin GQ, Hobeika AC, Johnson HM.
Department of Microbiology and Cell Science, University of Florida,
Gainesville 32611, USA.
Increasing evidence suggests that superantigens play a role in
immune-mediated diseases. Superantigens are potent activators of CD4+ T
cells, causing rapid and massive proliferation of cells and cytokine
production. This characteristic of superantigens can be exploited in
diseases where strong immunologic responses are required, such as in the
B16F10 animal model of melanoma. Superantigen administration is able to
significantly enhance ineffective anti-tumor immune responses, resulting in
potent and long-lived protective anti-tumor immunity. However, superantigens
are more well-known for the role they play in diseases. Studies using an
animal model for neurologic demyelinating diseases such as multiple
sclerosis show that superantigens can induce severe relapses and activate
autoreactive T cells not involved in the initial bout of disease. This may
also involve epitope spreading of disease. Superantigens have also been
implicated in acute diseases such as food poisoning and TSS, and in chronic
diseases such as psoriasis and rheumatoid arthritis. Viral superantigens are
also involved in the disease process, including superantigens derived from
human immunodeficiency virus and mouse mammary tumor virus. Finally,
immunotherapies that ameliorate the role played by superantigens in disease
are discussed.

Thanks to all of you for the responses. We're hanging in there albeit
by a thread. The issue of the antifungal is interesting as I have
been asking Dr G about changing it for the last 9 months. He has
been on Diflucan for 1 year and Nizoral for 3 months preceeding
that. My son is extremely viral and has had the best progress with
Valtrex. I'm so ready to start Kutapressin and chill with the ssri's
right now. Again thankyou for responding. Wendy

Hi Everybody,
I wanted to inform you all that it appears that the 'Chat' site is down as
it has been quite a bit lately. We are working to resolve this issue and we
will most likely be moving the site and the chat to another location.
I know this is frustrating for those of you that depend upon this chat to
connect and ask questions. Please understand that I have been doing the
research to understand the problem and it will be resolved shortly.

Wendy,
Sometimes when the dose of SSRI is too much this happens. Also how long has
your son been on the antifungal? They need to be switched every six months
because they lose their effectiveness.
Marcia

It's been over a week and I still can't access the conference area.
Is something wrong or is it just me?
Heeeeeelp!

Hi Noelle,
Every child is so different that it is difficult to categorize them as
"if______, then_____".
Same as for the NT child. But regarding what you read, my 3 year old ASD son
has significant fine and gross motor delays and I would have to describe him
mentally as gifted, definitely hperlexic as he site reads and is sounding out
words. I would be for giving all kids the benefit of the doubt until proven
otherwise, and then some. The human body and mind, especially a child's, is
very resilient, pliable, and adaptive. Hope this helps. Also, with my 2 year
old NT daughter, I still don't know what the future holds, but I have high hopes
for both of my kids.
Anne
From: "John & Noelle Bender" <faijcb@...
Every time I read about this, I get that sick feeling in my stomach. Maybe

Hi Doris,
Is Guillian Barre Syndrone the disease in "Lorenzos Oil", and if so can the
oil help Jacob?
Susan

sorry for the long posting -
My 6 yr old son has been a patient of Dr G's for almost 2 years.
We always suspected there was a link between Jacob's 'autism'
and my husband's Guillian Barre Syndrome.
NIDS was the only thing that made sense.
Jacob developed normally until around 2-2.5 yrs old
Around this time, he stopped speaking, started screaming
and would run back and forth. Sleep patterns became disrupted.
He started biting and scratching. An eval by the school and then
specialists said 'autism/PDD'.
PDD was the key because one doctor stated that he had 'some
of the qualities of autism but not all....'
A visit to a DAN Dr and subsequant tests showed a really
high white blood cell count not to mention antibodies to myelin.
ooo that nasty word myelin again ...
this is what is stripped in GBS .....
Also weird bacteria and anemia (for more on anemia and the HHV6 connection
read 'THE VIRUS WITHIN'.)
Started ABA in 1999 then found Dr G. Had an HMO - so Dr G was out.
Continued with ABA ..... Attended NIDS conference in Bethesda MD
to get more info on NIDS ..... began a GFCF remove-anything-he's
allergic-to-diet
....
Finally switched to a PPO in 2000 and had our first appt with Dr G in Bethesda.
Dr G placed Jacob on an antiviral (Valtrex) and a different antifungal. Nizoral
just wasn't
cutting it. We began to see improvement - better eye contact and verbal
imitation was up.
Dr G then moved Jacob to Famvir (antiviral) and Diflucan (antifungal).
A few months later, whenthings had stabilized ,we started testing the SSRIs.
Keep in mind, there is no way for Dr G to predict what SSRI will work for a
patient.
We went thru 2 before we found celexa. Previous 2 SSRIs caused Jacob to bounce
off the wall ..... whew ! to have that much energy ....
We tried to raise the SSRI to 1/2 a pill a day but energy really increases and
attention
goes down . So we're currently on an alternating dose of 1/4 and 1/2 tablet ....
Saw immediate improvement on celexa. Bright eyes and more alert.
He was actually watching things from the car ...
Flew out to see Dr G in August (a laptop is a must for traveling !!!!)
Had a NEUROspect done which showed (to me at least) why we can't raise the
celexa
without encountering problems.
One of these days, we'll get the NEUROspect scans out on our website
http://steve_doris.tripod.com
Pretty good blood flow to most of the brain.
Dr G tried to remove Jacob from antiviral - little virus flaired up again.
So it was back on Valtrex we went (Famvir was just agitating the virus).
Much to our dismay, Dr G asked that we put Jacob on Kutapressin.
oi! time to practice sticking an orange ....
That was 1 month ago. We're pretty much holding our own here.
We've seen some small signs of encouragement. When your son is asking
for his 'treat' (aka kutapressin injection) each night you have to start
thinking
"wow - what's going on here....".
We're looking for a good iron supplement - can't take FEOSOL
Contains Lactose which (we found out) sends Jacob thru the roof.
Visiting a local allergist in Jan 2002 to address the environmental issues.
We believe that mold/pollen are an issue since we've removed almost
everything else he's allergic to. Also, rotating diet / removal of
other possible allergans...
Future plan - to start a local NIDS Kids family support group
and perhaps a chapter.
The End :o)
doris
Millersville MD

Yes, we have a "support group": The NIDS Coalition,
with chapters in So Cal & No Cal that have actually
recently merged into the "California NIDS Coalition".
To speak with someone, please call 818-951-8579.
best, cyn
cynthia_mclaughlin@...

This can't possibly be right, "research" last week on 20/20 and the National
Post revealed that autism is caused by mom's being stressed out in their
third trimester."Puleeze". (notice the sarcasm)
Cheryl, thanks so much for posting such informative science based articles.

Dr Goldberg uses Meridian Valley Lab for the food screening. He doesn't
believe that any are completely accurate. He uses them more as a guide to
how activated their immune systems are. He has us follow the do's and
don'ts of diet. (on NIDS website) He then adjusts that to include other
foods he believes will be a problem based on the test results. (and clinical
experience)
If we had to change diet based on the test results many of our kids would
have nothing to eat. Thankfully when we remove the biggies, treat the
infections, they are able to tolerate a wide variety of foods.
Cheryl

As I mentioned before, my son is seeing Dr. Goldberg for the first
time next week. We live in L.A and I was hoping there was a support
group or some locals that would be willing to share their opinions or
advice. Thanks.
Julee Madkins

Another study on autoimmunity being triggered due to infections and a
dysfunctional immune sytem.
Cheryl
Reprinted from ScienceDaily Magazine ...
Source: University Of Texas Southwestern Medical Center
Date Posted: Monday, November 26, 2001
Web Address: http://www.sciencedaily.com/releases/2001/11/011120055447.htm

Hi Julee,
Your son sounds similar to my younger son. He was misdiagnosed as ADHD at
five, and developed OCD at seven. Eventually he was diagnosed with
Aspergers.
I found out that his problems were immune related shortly after the ADHD
misdiagnosis. I didn't find Dr. G until he was nine and we had tried
countless treatments.
I believe in NIDS 100%. That doesn't mean this is easy or fast. Until we
have more direct treatments I believe this is the way to go. We have some
setbacks but my son has come such a long way. Any setbacks we have now are
usually an infection triggering his OCD. I honestly believe he would never
have developed the second disorder if we had found Dr. G. earlier.
My son still has some catching up to do socially, but he's coming along. He
developed feelings he never had before. He is able to think about other
peoples wants and needs. He can interact very nicely with his big brother
instead of driving him crazy. You know he's doing well when his brother
will actually take him somewhere like an arcade, or a movie. That never
would have happened before.
It's really hard to think of all the changes because there have been so
many. He's been reading Harry Potter and is able to enjoy it and tell me
about social things......like the way he was being treated and what he
thought about it. Before you couldn't get him to read much of anything.
Now he can imagine things in his mind without needing a picture.
Cheryl

Kristina,
I have never heard of severe negative reactions to any ssri's.
You may want to check with Dr. G's office.
Michele

These posts are starting to scare me about negative affects of ssri's and
then the children not regaining past functioning!! we have just started our
son on Paxil. Can anyone give me an idea of good things that you have seen
from this drug and what negative reactions you've noted as well!
My son has regressed over the last two weeks but I have to honestly say it
MUST be from having a cold because the regression started 2 days prior to
starting the paxil.....so far he has not gotten worse but he certainly hasn't
gotten better. The cold is still lingering on but it seems like it is
finally coming to an end!
Thanks in advance everyone!
Kristina

I recently had this blood test done for my autistic son (we suspected
he was sensitive to wheat - we weren't sure what else). I received
the results this month, and I was wondering if anyone else in the
group has experience with this type of screening test for food
allergy, from York or any other lab that tests for food intolerance.
What are the limitations of this type of test? False positives? How
can I validate these results?

Sorry, I misspelled it. email is www.missroben.com and phone is 800-891-0083
Hope this helps! -Noelle

Could you please repost this? Something went wrong with my email last
week and I failed to get the text. Thanks.

Hi Wendy,
What did the horrible reaction consist of? I am just curious. Also, did he
need the SSRI in the first place if he was doing so well before it?
Thanks.

Hi Everybody, I'm in a quandry and thought someone might be able to
help. My 5 yr old son has been a patient of Dr G's for a year and
1/2 now. The 1st year he did amazingly well. Then he had a horrific
reaction to one of the ssri's. We took him off for 4 weeks and then
Dr G put him back on another sssri that we had used successfully
before. Although My son is better than he was after the reaction he
is not anywhere near where he was before all of this began. He is
sooo... Hyper and unfocused. He is zonier than he ever was. I'm
scared to death. Marcia you said in a recent post that your son got
worse before he got better. Would you mind elaborating. Maybe it
will help put me at rest. I get so frustrated that I start wondering
if any of this is doing any good. I don't understand how he could be
doing so well just to lose him again. There is no indicaton in his
bloodwork. Has anyone else experienced this? Thanks in advance for
all your help. Wendy

I have a six year old son who has Asperger's/ADHD depending on which
doctor is treating him.He is very verbal but also aggressive and
irritable and totally unpredictable.
We see Dr.Goldberg for the first time next week. My husband and I
have seen so many doctors, doing everything possible to help our
child. Not one has ever done blood work or suggested that there may
be something phsyically wrong with him. My husband is skeptical that
Dr. Goldberg could produce such miraculous results. He's hesitant to
subject our son to yet another new medication. If anyone would be
willing to share their success stories or what we could expect I
would appreciate it.
Julee Madkins

hello everybody,
my sonis 3.1/5 years and is under medical and
behavioural therapy. he was improving good and
recently againhe became hyperactive since few dayz.
May I know the possible reasons if anybody can help
for this.
Please let me know if anyone can give me reply.
.

Please disregard that note to Marc - it accidently went to the NIDS group.
Yikes. Please delete from your e-mail that was a personal e-mail not
intended for the NIDS group at this time. Sorry. I will be more careful next
time.
Linda Smith

!! ANNOUNCEMENT !! NIDS PRESENTATION BY DR. GOLDBERG
The NIDS Research Institute and Parents Coalition announces the following
event:
Saturday December 1, 2001 10AM PST/1PM EST to 2PM PST/5PM EST.
Autism Spectrum Disorders, ADD/ADHD and Chronic Fatigue:
The Medical Epidemic and the Neuro-Immune Connection
A Video Tele-Conference presentation: Universal City in Los Angeles, CA --
Burlington in Boston , MA
Presented by the NIDS Research Institute and Parents Coalition:
Dr. Michael Goldberg, M.D. FAAP. Director, NIDS Medical and Scientific
Advisory Board
Presentation followed by a Questions and Answer period.
For Boston Attendance contact Ryan at nids.lecture@...
In Los Angeles contact me directly at marc@... or call 818-951-8579
This event can bridged to any other location. If you are interested setting
up a location to participate in the exciting event, please contact me
immediately at 818-951-8579.
For more information about Neuro-Immune Dysfunction Syndrome please visit
www.nids.net
Marc Share
President and Executive Director, NIDS-

In a message dated 11/21/01