Nids

Wyndham Hotel, Billerica, Massachusetts, reservations call 1-800-Wyndham and
mention NIDS to get the reduced rate. Date is 22 Sept. at 7:00 p.m. Kathy
NIDS-NNY

Marcia,
How did you help your 12 old son with ABA? My son is 7 years old with
AS/HFA, I am working with a DAN doctor right now. When I looking into ABA, it
seems that ABA only works with 8 year or younger, and best with a child under
5.
What is Dr. G's protocol, Does it require any medication?
Thanks
Jin

Can someone please repost the hotel information and the conference registration
information for when Dr. Goldberg will be speaking in the Boston area.
We used to drive south to Bethesda (from NY) for our son to see him. Now we'll
go north just to hear him speak, and hope that in the future he can see east
coast patients again. If not, the next family vacation is Disneyland CA.(with a
Tarzana detour). Before we had a NIDS kid this type of migration was reserved
for the tours of the Grateful Dead.
*Note to the lurkers & fence sitters - IT HAS ALL BEEN VERY BENEFICIAL TO OUR
SON - act now!

marcia, what did dr. g do with yr son that brought him
to recovery.
how is dr. g's protocol different than the dan
protocol?
eleanor ( mom to jud 3.8 autistc)

I'm sure some kids could eat regular wheat products (not WHOLE wheat) without
a problem, but my three (all of whom are under dr. G's care) have to limit
REGULAR (white) wheat as well (to 1 serving/day) as they are sensitive to
gluten. Look at your food panel results that Dr. G ordered---
Kate

Message: 5
Trina,
Try looking up the website http://www.nids.net There is wonderful
information there especially under the section titled "for families" Under
that section there is also a link to Dr. G's website called
"Neuroimmunedoctor.com". His phone is listed there but is (818) 343-1010.
Contact me if I can help. My son is twelve and now recovered because of
Dr. G and ABA.
Marcia

Debbie,
As long as the word "whole" is not in front of the word "wheat"
it should be Ok. But whenever I introduce a new food to my
girl I always keep an eye on her for several hours later to see
if there is any negative reactions. I don't know about the gold-
fish crackers, but I'm sure it would be ok. Whey is a question
I had myself... maybe someone can jump in at this point???
Good Luck!!
**Michele

Hello,
I'm hoping that someone can help clarify something for me in regards
to the Do's and Don'ts of Dr. G's diet. Many products have as the
first ingredient "Enriched flour (wheat flour, niacin, etc)
OR "Unbleached Enriched Wheat Flour (flour, niacin, reduced iron,
etc) listed on the label. I thought Goldberg said kids could eat
something as long as it did not say "whole" in front of the word
wheat. Is this true? Are these products that say enriched flour or
unbleached enriched wheat flour o.k. to give our kids? I don't want
to cheat on the diet and want to make sure. I am very familiar with
the GFCF diet and know that these products are no no's...but want to
clarify what Dr. G. say's about these.
Dr. G's office had said that I could probably give him goldfish
ORIGINAL crackers (no cheese flavors), but is this true?
Thanks for your feedback!
Debbie

Trina,
Where do you live? My son David was put on "autism watch" at the age of 18
months (In other words, the doctor was pretty sure that he had it, but didn't
want to slap the label on him until we did some more evals, mri's, BAER
tests, etc.), and the diagnosis was confirmed at the age of 25 months. David
did start showing symptoms early on, but his developmental pediatrician said
that she had diagnosed a few kids as early as 18 months. He was screened by
Drs. Melmud and Krauss-Blitz and the what is now the Southwest Autism
Research Institute (Phoenix, AZ). The bad thing is that Arizona had zilch in
the realm of early intervention. All we got was a place on a two year long
waiting list. We moved.
MUSC (South Carolina) and Duke University (Dr. Delong) have a history of
diagnosing and evaluating kids at a young age. A friend of mine has a son
who was screened/diagnosed at MUSC at the age of nineteen months--but his
autism was severe and unmistakable, even at that early age. Good news...the
kid is now three, almost four, and doing great. He's a poster child for
appropriate early intervention.
I'd insist to my pediatrician that he refer you child to a developmental
pediatrician. But try not to fret----my daughter, who is a certified
genius---did some of those same things at that age---before I knew it was
abnormal, lol! She even stopped talking for a spell of time around 18
months, but then recovered all her language about a month later. She's a
perfectly normal brainiac!
Good luck, I hope this all helps somehow. I remember when Jamie was born, I
watched him every moment for signs of autism as his brother was just starting
to go through the diagnosis process. Jamie did eventually end up
autistic(moderate), but it was very late onset, and he's now fully recovered
(thanks to ABA and Dr. G's protocol.)
David is coming along, too, but his autism was so much more severe than
Jamie's. But...he's talking now, and what a precious, precious voice he has.
(Again, thanks to Dr. G., and long live Andrew Bondy with Pyramid
Educational Associates!)
Good luck!

If any one on our list is interested!
Recall on Phenylpropanolamine
All drugs containing Phenylpropanolamine are being recalled. You may
want to
try calling the 800 number listed on most drug boxes and inquire about
a
REFUND.
Please read this CAREFULLY, as I know that some of you may USE some of
these
drugs (Alka Seltzer Plus for one).
Also, please pass this on to everyone you know. STOP TAKING anything
containing this ingredient. It has been linked to increased hemorrhagic
stroke (bleeding in brain) among women ages 18-49 in the three days
after
starting use of medication.
Problems were not found in men but the FDA recommended that everyone
(even
children) seek alternative medicine. The following medications contain
Phenylpropanolamine:
Acutrim Diet Gum
Acutrim Diet Suppressant Plus Dietary Supplements
Acutrim Maximum Strength Appetite Control
Alka-Seltzer Plus Children's Cold Medicine
Effervescent Alka-Seltzer Plus Cold medicine (cherry or orange)
Alka-Seltzer Plus Cold Medicine
Original Alka-Seltzer Plus Cold & Cough Medicine
Effervescent Alka-Seltzer Plus Cold & Flu Medicine
Effervescent Alka-Seltzer Plus Cold & Sinus
Effervescent Alka Seltzer Plus Night-Time Cold Medicine
Effervescent BC Allergy Sinus Cold Powder
BC Sinus Cold Powder
Comtrex Deep Chest Cold & Congestion Relief
Comtrex Flu Therapy & Fever Relief
Day & Night Contac 12-Hour Cold Capsules
Contac 12 Hour Caplets
Coricidin D Cold, Flu & Sinus
Dexatrim Caffeine Free
Dexatrim Extended Duration
Dexatrim Gelcaps
Dexatrim Vitamin C/Caffeine Free
Dimetapp Cold & Allergy Chewable Tablets
Dimetapp Cold & Cough Liqui-Gels
Dimetapp DM Cold & Cough Elixir
Dimetapp Elixir
Dimetapp 4 Hour Liquid Gels
Dimetapp 4 Hour Tablets
Dimetapp 12 Hour Extentabs Tablets
Naldecon DX Pediatric Drops
Permathene Mega-16
Robitussin CF
Tavist-D 12 Hour Relief of Sinus & Nasal Congestion
Triaminic DM Cough Relief
Triaminic Expectorant
Chest & Head Congestion Triaminic Syrup Cold & Allergy
....I just found out and called the 800# on the container for Triaminic
and
they informed me that they are voluntarily recalling the following
medicines
because of a certain ingredient that is causing strokes and seizures in
children:
Orange 3D Cold & Allergy
Cherry (Pink) 3D Cold & Cough
Berry 3D Cough Relief
Yellow 3D Expectorant
They are asking you to call them at 800-548-3708 with the lot number on
the
box so they can send you postage for you to send it back to them, and
they
will also issue you a refund. If you know of anyone else with
small children, PLEASE PASS THIS ON.
THIS IS SERIOUS STUFF.
PLEASE PASS ALONG TO ALL ON YOUR MAILING LIST so people are informed.
They
can then pass it along to their families. To confirm these findings
please
take time to check the following URL:
http://www.fda.gov/cder/drug/infopae/ppa/default.htm
http://www.fda.gov/cder/drug/infopage/ppa/default.htm
Nice day.

Hey again,
First, let say thanks for everyone's concerns, advice, and prayers. I did take
him to the pediatrician and got the expected, "it is too early to tell" speech.
He wasn't rude or sarcastic, but he simply did not take it seriously enough. He
said to come back at 15 months and then he'll be more concerned.
I orderd and received today the hair kit for heavy metal from VRI. I'll just
have to shave his little head and remove all of his pretty blonde hair for the
test. It takes a good amount to get enough to test. I have made him dairy
free, and am working on the gluten. I have to find a good substitute for gold
fish crackers and cheerios, the staple of most one year olds.
I am still very concerned, now more than ever. Tonight, I "tested" him. I gave
him something he loves, a dumdum sucker. I let him suck on it for a few
seconds. Then, I took it and put it in a clear plastic container with a lid. I
placed it on the floor in front of him, between the two of us. He picked it up,
shook it repeatedly, but never handed it to me. He was getting angry, started
to cry, then...... HE TOOK MY HAND AND ACTED AS THOUGH HE WAS GOING TO PUT IT ON
THE CONTAINER!!!!!!!!! He stopped short of doing this and just crawled up into
my lap and cried. THIS IS VERY AUTISTIC!!!!!! This is by far the worst sypmtom
he has displayed yet. I did the same type test with bubbles. I blew the
bubbles, then I would put the lid back on and just place the container on the
floor. He did, finally, bring the bubbles to me and put them in my hands. He
did this four or five times consistently. BUT, not with the sucker.
Why????????????
Now, I am really freaked out. I am on a mission to now try to find someone
locally to evaluate him, but am afraid that no one will agree to because of his
age. Where out of state can I go?? Has anyone taken their really young ones to
Johns Hopkins or somewhere like that?? Can anyone point me in the right
direction here????
Trina

I hope I don't sound cheap here, but I just found out that Dr. G.
doesn't accept Medicaid. I have 2 sons with Autism and we are going
out in November for our first visit. How do most of you afford
this? Do you simply pay out of pocket or is there something else
that I am missing that could help out? I would appreciate your
help. I am single mom and not sure how to meet the financial end of
this.
Thanks,
Tammie

Hi all,
I have been reading about the new finding on high proteins that they
have found to be in children born and later is found autistic. I would
like as much information on this as possiable. If anyone knows about it
and has any info please send it to me. Thanks a lot! Lois (JJsmom)

I am a mother of four sons my second son ( 5) has low to moderate Autism. We
are moving to the Washington D.C. metro area soon. Does anyone know which
school in the area is best for autism. I heard Fairfax County was very good,
but don´t know which school in particular. I would appreciate anyones help.
Thank you
Gladys

ASA has MD Chapters (Prince George's, Anne Arundel, Montgomery, Washington,
Carroll, Charles and Howard Counties and a Baltimore-Chesapeake Chapter). A
Chapter is starting in St. Mary's County, MD. There is also a Northern VA
ASA Chapter which encompasses several VA counties so far, including Fairfax.
P.G. (MD) and Fairfax County (VA) each have about 300 students with autism
2-21 years of age. Howard is heavy into inclusion and Ben Dorman (a former
ASA Chapter President of Howard) assisted in pushing its school system into
creating effective programs there. P.g

In a message dated 8/16/2001 11:43:01 PM Eastern Daylight Time,
rcovucci@... writes:
<< Dr.
Goldberg WILL NOT continue to follow any child doing Chelation Therapy
unless toxicity was proved through a Children's University Hospital.
Elyse Goldberg
What kind of test would a hospital do the urine or something else?

Tammie,
Dr. Goldberg does not do chelation therapy. It is dangerous.
In his website if you do a search for chelation in his "Ask Dr. Goldberg"
conference section he answers many questions regarding chelation.
Rosemarie

This was posted in jan. 2001
--- In NIDS@y..., "Elyse Goldberg" <elyse-g@i...
This is from Dr. Goldberg's presentation given today in Houston
Texas... Dr.
Goldberg WILL NOT continue to follow any child doing Chelation Therapy
unless toxicity was proved through a Children's University Hospital.
Elyse Goldberg
PATHOPHYSIOLOGY (cont.)
Mercury -
A "New Disease" Model - NOT!
Some feel Autism has never been described as a mercury-induced
disease,
because the disorder must arise from a mode of mercury administration
which
has not been studied before
But Mercury (Hg) - symptoms, methods of detection, negative effects,
etc.
HAS BEEN STUDIED for MANY, MANY years
NO support in past literature:
Celiac Disease = Autism - NOT
Mercury = CFS, Autism, etc. - NOT
Mercury (Hg) (mer´kyu-re)
Stedman's Medical Dictionary
A dense liquid
<http://physician.pdr.net/physician/static.htm?path=pdrel/s.htm?
id=13314|
metallic
<http://physician.pdr.net/physician/static.htm?path=pdrel/s.htm?
id=3910|
element
<http://physician.pdr.net/physician/static.htm?path=pdrel/s.htm?
id=29837|
atomic
<http://physician.pdr.net/physician/static.htm?path=pdrel/s.htm?
id=6810|
no. 80, atomic
<http://physician.pdr.net/physician/static.htm?path=pdrel/s.htm?
id=27502|
wt. 200.59; used in thermometers, barometers, manometers, and other
scientific instruments
Some salts and organic
<http://physician.pdr.net/physician/static.htm?path=pdrel/s.htm?
id=23785|
mercurials are used medicinally
197Hg (half-life
<http://physician.pdr.net/physician/static.htm?path=pdrel/s.htm?
id=38006|
of 2.672 days) and 203Hg (half-life
<http://physician.pdr.net/physician/static.htm?path=pdrel/s.htm?
id=19600|
of 46.61 days) have been used in brain
<http://physician.pdr.net/physician/static.htm?path=pdrel/s.htm?
id=26082|
and renal
<http://physician.pdr.net/physician/static.htm?path=pdrel/s.htm?
id=36132|
scanning
<http://physician.pdr.net/physician/static.htm?path=pdrel/s.htm?
id=1900|
Care must be followed with its handling
Mercury Poisoning:
The Mosby Medical Encyclopedia
Hydrargyrism - Mad hatter's disease, mercurialism, a serious condition
caused by swallowing or breathing mercury or a mercury compound.
A long-term form results from breathing the vapors or dust of mercury
compounds or from repeated swallowing of VERY SMALL AMOUNTS.
It leads to irritability, excess saliva, loosened teeth, gum
disorders,
slurred speech, trembling, and staggering.
Mercury Poisoning (cont.)
Symptoms of sudden mercury poisoning appear in a few minutes.
They include a metal taste in the mouth, thirst, nausea, vomiting,
severe
stomach pain, bloody diarrhea, and kidney failure that may result in
death.
Drugs may be given that hook onto mercury so it can be released from
the
body.
Sources of Mercury compounds:
Farming chemicals
Certain antiseptics and dyes
Used heavily in industry
Seafood from contaminated waters has caused serious public health
problems.
Distinct pattern of neuronal degeneration in the fetal rat brain
induced by
consecutive transplacental administration of methylmercury.
Kakita A, Wakabayashi K, Su M, Sakamoto M, Ikuta F, Takahashi H
Brain Res
2000 Mar 24;859(2):233-9
The transplacental neurotoxicity of methylmercury (MeHg) on the fetal
rat
brain was studied.
Adult female rats were administered 1, 2 or 3 mg/kg/day methylmercury
chloride (MMC) orally for either 5 or 12 days, and were then mated.
They were subsequently administered MMC in the same manner until the
end of
gestation.
On embryonic day 22, a proportion of the fetal brains were
histologically
examined.
Neuronal degeneration
- fetal rat brain (cont.)
Neuronal degeneration of varying degree was detected consistently in
the
brain stem, cingulate cortex, thalamus and cerebral basal area,
including
the hypothalamus.
The distribution pattern of neuronal damage was different from those
in rats
treated with MeHg in the postnatal or adult stages.
The offspring derived from dams treated with 1 mg/kg/day MMC for 5
pregestational days and throughout pregnancy survived with inherent
brain
lesions.
This experimental model could be a useful tool for research on the
neurotoxicity of MeHg in the human fetal brain.
JOINT STATEMENT OF THE AMERICAN ACADEMY OF FAMILY PHYSICIANS (AAFP),
THE
AMERICAN ACADEMY OF PEDIATRICS (AAP), THE ADVISORY COMMITTEE ON
IMMUNIZATION
PRACTICES (ACIP), and THE UNITED STATES PUBLIC HEALTH SERVICE (PHS)
http://www.aap.org/policy/JOINTthim.html
In 1999, family physicians, pediatricians, federal health officials,
and
vaccine manufacturers stated that because any potential risk from
mercury is
of concern, and the elimination of exposure to mercury in the form of
thimerosal from vaccines is feasible, thimerosal should be removed
from
vaccines as soon as possible.
However, there remains no convincing evidence of harm caused by low
levels
of thimerosal in vaccines.
JOINT STATEMENT (cont.)
Since mid-1999 - two new hepatitis B vaccine products have been
introduced
and one new Hib product
Will make the new supply of both hepatitis b and Hib vaccines for
infants
entirely free of thimerosal as a preservative.
One of the four licensed DTaP vaccines is already thimerosal free,
and at
least one other thimerosal free DTaP vaccine is anticipated to be
licensed
by early 2001.
Thus, the likely maximum number of micrograms of ethylmercury that an
infant
may be exposed to from the routine immunization schedule will have
been
reduced by 60%.
This amount will be reduced even further in early 2001 when at least
two
vaccine products for hepatitis B, Hib, and DTaP are expected to be
available.
Meanwhile, research on the potential health effects of exposure to
thimerosal is continuing, and information will be monitored closely
by the
PHS to determine if any changes in policy are needed.
JOINT STATEMENT (cont.)
The AAFP, AAP, ACIP, and the PHS recommend continuation of the current
policy of moving rapidly to vaccines which are free of thimerosal as a
preservative.
Until an adequate supply of each vaccine is available, use of
vaccines which
contain thimerosal as a preservative is acceptable.
Vaccination Theory - Not!
This theory does not account for the children who have NEVER had any
Vaccinations or high metal exposure
High metal levels are not being found by Academy accepted accredited
laboratory's (University level Children's Hospital)
In other disease models (MS,CFS/CFIDS Fibromyalgia) exposures such as
maternal Hg exposures (e.g., from vaccinations, thimerosal-containing
RhoGam
injections during pregnancy, or dental fillings) have been ruled out
in the
literature.
The AMA's current policy on hair analysis - - adopted in 1984 and
reaffirmed
in 1994 is:
The AMA opposes chemical analysis of the hair as a determinant of the
need
for medical therapy and supports informing the American public and
appropriate governmental agencies of this unproven practice and its
potential for health care fraud *
* Hair analysis: A potential for medical abuse. Policy number H
175.995,(Sub. Res. 67, I-84; Reaffirmed by CLRPD Rep. 3 - I-94)
Hair Analysis (cont.)
In 1999, researchers from the California Department of Health located
nine
laboratories and sent identical samples to six of them. The reported
mineral
levels, the alleged significance of the findings, and the
recommendations
made in the reports differed widely from one to another. The
researchers
concluded that the procedure is still unreliable and recommended that
government agencies act vigorously to protect consumers .*
Even if hair mineral content were measurable with 100% accuracy, it
makes no
difference because the RESULTS ARE NOT USEFUL FOR MEASURING THE BODY's
NUTRITIONAL STATUS.
Should you encounter a practitioner who claims otherwise, run for the
nearest exit!
Hair analysis: A potential for medical abuse. Policy number H-175.995,
(Sub.
Res. 67, I-84; Reaffirmed by CLRPD Rep. 3 - I-94)
Chelation (ke-la´shun)
Stedman's Medical Dictionary
Complex
<http://physician.pdr.net/physician/static.htm?path=pdrel/s.htm?
id=42627|
formation
<http://physician.pdr.net/physician/static.htm?path=pdrel/s.htm?
id=18355|
involving a metal
<http://physician.pdr.net/physician/static.htm?path=pdrel/s.htm?
id=34180|
ion and two or more polar
<http://physician.pdr.net/physician/static.htm?path=pdrel/s.htm?
id=37321|
groupings of a single molecule;
Thus
<http://physician.pdr.net/physician/static.htm?path=pdrel/s.htm?
id=5459|
in heme
<http://physician.pdr.net/physician/static.htm?path=pdrel/s.htm?
id=13075|
the Fe2+ ion is chelated by the porphyrin
<http://physician.pdr.net/physician/static.htm?path=pdrel/s.htm?
id=42627|
ring
<http://physician.pdr.net/physician/static.htm?path=pdrel/s.htm?
id=2793|
Chelation can be used to remove an ion from participation in
biological
reactions, as in the chelation of Ca2+ of blood
<http://physician.pdr.net/physician/static.htm?path=pdrel/s.htm?
id=8636|
EDTA <http://www.thorne.com/altmedrev/fulltext/dmsa-fig1.jpg
thus
<http://wwws.elibrary.com/linktopub.cgi?
Form=TS&pubname=The_Mosby_Medical_En
cyclopedia&puburl=http~C~~S~~S~www.mosby.com
<http://www.thorne.com/altmedrev/fulltext/dmsa-fig1.jpg
claw
<http://wwws.elibrary.com/linktopub.cgi?
Form=TS&pubname=The_Mosby_Medical_En
cyclopedia&puburl=http~C~~S~~S~www.mosby.com
Chelation therapy
http://skepdic.com/chelate.html
Chelation therapy consists of slow-drip IV injections of EDTA
(ethylenediamine tetraacetic acid),a synthetic amino acid, combined
with
aerobic exercise, special diet and no smoking.
EDTA treatment has been around since the 1940's, when it was
developed to
treat lead poisoning..
The word "chelate" is derived from the Greek word for claw and
apparently
refers to the alleged removal of plaque and calcium deposits from
arteries
and veins by EDTA.
Advocates claim that there is ample evidence to support the claim that
chelation can prevent and cure heart disease, stroke, senility,
diabetic
gangrene and many other vascular diseases.
Chelation therapy (cont.)
http://skepdic.com/chelate.html
Lack of adequate controls in studies purporting to demonstrate the
effectiveness of chelation has been a consistent criticism of
skeptics.
Critics of the therapy in the American Medical Association (AMA) and
the
Federal Drug Administration (FDA) claim that there is no good
scientific
evidence supporting the extravagant claims of advocates.
Defenders of the therapy claim that the medical establishment has
engaged in
a half-century of deceit and conspiracy to suppress chelation because
of
fear it would cut into the profits made by drug therapy and surgery.
DMSA
DMSA is a dithiol (containing two sulfhydryl, or S-H, groups) and an
analogue of dimercaprol (BAL, British Anti-Lewisite), a lipid-soluble
compound also used for metal chelation<mailto:J.K.Buitelaar@p...
DMSA's water solubility and oral dosing create a distinct advantage
over BAL
BAL which has a small therapeutic index and must be administered in
an oil
solution via painful, deep intramuscular injection.
DMSA, on the other hand, has a large therapeutic window and is the
least
toxic of the dithiol compounds.
Safety of Chelators - NOT!
Most human chelators are a form of protein containing thiols, also
called
sulfhydryls
Meaning a sulfur and hydrogen compound.
Sulfa drugs are known to be deadly for people who are intolerant
Most of the drug versions are synthetic molecules.
Molecules created by man, and not naturally found in humans.
There is possibility of not being able to metabolize such compounds,
allergic reactions, auto immune reactions, redistribution of mercury,
and
other dysfunctions.
Safety of Chelators - NOT!
(cont.)
The bottom line will be your bodies ability to expel the chelating
agent
along with accumulated mercury.
If your liver and kidneys are not able to push out the chelator, you
have a
problem.
If your body cannot excrete the chelating agent, it will need to
metabolize
the material, breaking it down to it's constituent parts.
The mercury gathered by the chelator will be disbursed into your body
again,
rapidly, as a large dose.
Such a rapid redistribution can magnify your mercury toxicity problems
CNS toxicity (of chelation):
Dr. Haley, a Ph. D., has shown that EDTA can cause a 100X toxicity
increase
with mercury in the brain.
Severe damage to the brain tubulins can occur, resulting in
Alzheimers like
dementia.
What about DMSA???
--- End forwarded message ---

I am the mother of 2 boys with autism. We will be
seeing Dr. G. in November. Does he do chelatin
therapy? Does he check for heavy metal poisening?
There is a Dr. Amy Holmes who treats chelatin therapy
and her son recovered. Please, someone answer my
questions if you know.
Thanks,
Tammie

Trina,
some of what you describe is what my son did at theat age. He was dx
with Asperger's Syndrome in June. That is the high end of the autism
spectrum. But you are also dealing with a child who has older sibs that
may have done something with a shoe that he remembers and can't figure
it out. Also, is it any shoe or his only??? He is aware of his
surroundings, that is good. I suggest you keep a journal for yourself
in which you write your feelings regarding your entire family and
yourself. Here you can be brutally honest with averything and then at a
later date, go back and read what you wrote. I bet you will find the
documentation of your youngest son's development as well as the joys of
your oldest and the antics of the middle two. That will provide a more
complete picture of what you are seeing. Also, your son should be
having a well check at this age and again at 15 mo. Check with your
pediatrician and ask for a Denver Development. That will help provide
you with more info. Keep us informed.
My thoughts are with you,
Darla
my four boys. I have been blessed so far with "normal" typical children, other
than him. Or so I thought. My 6 yr old and my 3 yr old sons are just fine.
They developed normally all along. I don't ever remember feeling uneasy about
their developemental progress or about things they used to do.
does, however, have some unusual behaviors that are causing me to get that all
too familiar panic stricken nauseated feeling in the pit of my stomach and in my
heart. Remember those??? I had hoped that I would never have those again.
obvious. He is NOT like our other son with autism. His weird behaviors are
different. My first son acted as though he was deaf. He totally ignored
everyone but Barney. He flapped his arms. My baby, who just turned one, does
not act deaf. He acknowledges when his name is called. He smiles at daddy when
he comes home from work everyday. He greets me every morning and after every
nap from his crib with a huge smile and gets all excited.
out during the day and bring me toys or etc. He is walking, and has for a month
or so. He also has started doing some toe walking. Now, I know a lot of normal
kids do some toe walking, but it makes me physically ill to see him doing it.
Another thing he does it play with a shoe. He does play with his toys
appropriately, but he is just as content to play with a shoe. He is not
pretending it is a car or anything like that. He just simply picks it up, walks
over to the coffee table or a chair and sets it down. He looks at it. Then, he
picks it back up and puts it in a different position or on a different table.
He seems facinated by it. He is not flapping, posturing, or stimming outwardly,
as far as I can tell. And, I am watching him like a hawk. He does this for
about 5 minutes or so. If I call his name, he will look up and smile.
months. My older son never pointed until the age of 5. He also does not use
Mama or DaDa discriminately. He does jabber dadadadada and mamamamama, but is
not calling our names.
tested for mercury?? At his young age, it would probably still show up? What
type of developmental testing is out there for 12 month olds??? Oh my God,
please someone tell me he is OK???!!!
autistic spectrum". I need someone to validate my concerns or tell me to take a
chill pill. OK, guys, don't hold back. At age 12 months, displaying the
symptoms I described, am I off base??

Hi Trina
I know exactly where you are coming from as have been there except I didn't
have any "normal" children to compare with as both my boys were PDD or
autistic. You are right to be wary but I don't see anything wrong in what
you have said. I had my son checked by the boys developmental pediatrician
at 12 months and he gave me a copy of the CHAT which we did on him and from
memory I think there were only 2 things on it he couldn't do and I think the
CHAT is for 18 months and he was able to do them by then. I would suggest
you do the same. I also took him to my boys speech pathologist who
specialises in Autism to have her check him and an OT. I have followed up
the speechy at 18 months and he was still age appropriate and will do so for
the last time (I hope) next month when he turns 2. I see nothing Autistic
about him but want to make sure he has the right number of 2 word sentences
etc. as he only has a couple and my first son was dyspraxic as well. He
will also see the developmental ped at 2 as well but I am not worried at all
myself but figure it is better to be safe and get an individual opinion.
I think it is only natural for you to worry but don't let it get in the way
of you enjoying him (I started to a little) but keep an eye. You will know
when and if the shoe becomes "not quite right"
Jenny

Debi...
We focused on "high interest" drills during this time. It lasted about three
to four weeks for us, the worst came in the afternoon.
Good luck!
Traci

We have BCBS of Georgia and with an option for out of provider use to be
covered at 60%. Fortunately, the hopsital we used was a provider and it was
fully covered. I think this was mainly due to the fact that a recent law,
(i'm not sure if in Georgia only) was passed stating if the Insurance Company
traditionally covered
Neurological disorders, they are required to pay similar benefits for Autism
Dx.
Hope this helps.

Debbie,
When we were adjusting/adding meds, we waited to INCREASE demands on my son
until things had stabilized--this seemed to work well for us.
Kate

Hello,
I don't mean to cross post here, but can anyone tell me how
medications have (to what degree) interfered with your ABA program?
We have just started our 4 yr. old son on Valtrex (first week) with
no apparent side effects. However, I have consultant with our case
supervisor for ABA and asked her that if my son suffers from any side
effects (you know what they are) if it would be possible to maybe
decrease some of the demands placed on my son until they subside.
She is somewhat hesitant to do this however....I would appreciate
anyones input, feedback or suggestions regarding this.
Thanks very much!
Debbie

Hello again,
Can anyone tell me if their insurance has paid for a neurospect for
their child? If so, what kind of insurance plan did you have (HMO or
indemnity)?
Thanks again!
Debbie

In a message dated 8/9/01 12:02:50 AM Central Daylight Time,
debwarwick@... writes:
We crushed the pill (after wiping off the blue coating with water; the dye
irritates some kids) and mixed it with applesauce. Our son took it with no
problems. Good luck.
Warren Anderson

Hello!
Don't forget -
if you have names/addresses/telephone numbers
of places to stay / places to visit / things to do /
places to eat / places to buy food etc
near Dr Goldberg, please email them
to me at sjsmith@...
I'm putting together a pkt of info
for folks who need to travel to see Dr G.
My final project will be to create a
map with these places marked off
X = Dr goldberg
A = UCLA - neurospect
B = legoland
C = Disney land
D = LA airport ....
maybe color coded ?? (I like visual things).
I do want to chk with each hotel to see if
they will offer discounts to NIDs families
traveling to see Dr G.
So, email whatever you have.
Telephone numbers aren't necessary but
would be helpful.
Hope to get more info when we're out there
next week.
Enjoy!
Doris
from very very hot humid hazy Maryland

No I mean what causes Hyperactivity?
I know only 2 well the symptoms
(ADHD) & the confusion.
All I can find is
the reference 2 Ritalin
Really I would prefer this
as a last resort option.
If anyone has info,
or knows sites etc
Would B most pleased.
Can e-mail privately
if U prefer.
No doubt their R alternatives
2 Ritalin , good however
I would prefer also
2 understand just
what is happening
if anyone knows.
Neil.
PS: I had a bad experience
with Ritalin once.
I need some advise re
10y non-verbal climber type son
I'm assured by Drs tis safe.
What thinks thou?

When we have icky pills that my son needs to take, we have a compounding
pharmacy make it into a flavored liquid and he could just take it by the
teaspoon.
Amanda

Hello everyone,
O.K. - I'm officially ready to start giving my son Valtrex,
prescribed by Dr. G. I hope that everyone can give me their best
tips, recommendations, etc. on how to get the medicine down. I have
not filled the prescription yet, but understand that it's in a pill
form? If so, do most of you crush the pill and then administer with
a favorite food? Can you give it in a drink?
Thanks for any advice from someone that's already been there, done
that!
Debbie

This was also the case for our son - the high ANA reading is sign of
autoimmune dysfunction. Our son was positive for CMV and EBV, and now after
a year and a half of valtrex/famvir these titers are right down. There are
other herpes viruses (Herpes I and II that can also be elevated, not always
HHV6). We too trailed taking Famvir down to half the dose in the last month
on the basis of improvement shown in the second full immune panel test but
our son's behaviour deteriorated - so we put it back up again for now, and
improvement occurred again within days. While NK cells might appear normal
in %, it has to be looked at in the perspective of the total white cell
count and the balance.
Hope this helps,
Best wishes,
Robert

I plan to file a religious exemption to vaccines with the school this year.
Does anyone know if this also covers the TB test? Has anyone forgone vaccines,
but done the TB test?
Courtney

Hi Debbie
Have you given your Pediatrician copies of Dr G's articles, or referred them
to his website(s)? I gave our Ped the "Autism and the Immune Connection"
and "A New Definition of Autism" articles. She agreed to not only run the
NIDS tests but also prescribe all recommended meds. Dr G's office faxes the
prescription to her and she calls it in. On occasion I have have taken Dr
G's prescriptions (written on his own forms) to Walgreens (local pharmacy)
and our insurance covered it. Insurance authorizations/denials never cease
to amaze me!
Good luck
Suzanne
PS I would not waste my time with an immunologist. We did and still laugh
at his comments. He was clueless. He did not think Nick presented
autistic-like symptoms. (This was before we began treatment with Dr G.). I
told him I would go out of the room for a few minutes and then ask him
again.

I have another question for all of you....I'm trying to get my son's
primary HMO pediatrician to write the prescription of Valtrex that
Dr. G wants to start my son on. She's hesitant and wants to refer my
son to an immunologist so that they can find out why his ANA
antibodies were so high (his HHV6 titers and NK cells came back
normal). I'm afraid of waisting more valuable time in the process.
I want my son's primary doctor to work with Dr. G so that she can
write up the prescriptions and I won't have to pay for them out of my
own pocket!
Has anyone had a similar situation? If not, what are your thoughts?
Thanks for the feedback!
Debbie
P.S. Do insurance companies pay for the neurospects?

Hello all,
My son has recently completed the NIDS bloodtests. His HHV6 titers
and natual killer cells came back normal. Should this be the case?
Is this an accurate indication that he is not virus connected. I
remember reading a post that Dr. G said not all kids are virus
connected, but certainly immune connected...help. He did come back
with a high ANA antibody reading. Dr. G wants to start him on
Valtrex and I'm trying to get my son's HMO primary doctor to sign off
on the prescription (it's expensive).
Has anyone else had this outcome on test results?
Thanks!
Debbie

My mother and my grandmother were right...

Unlocking Autism announces.........
Wings for Little Angels Program
"Helping Those With Autism Soar"

Medical Travel Assistance Program
If you have a child, or know of a child, in need of travel to medical care
outside of the immediate area, Unlocking Autism may be able to help.
Unlocking Autism has been able to partner with several airlines to assist
parents of children with Autism in getting to medical appointments in other
states.
Initial contact information should include:
Child's name and age
Legal Guardian's name
Name of person accompanying child on trip
Departure and Return Dates
Departure and Return Airports
and, any special accommodations the child may need (assistance, wheelchair,
etc.).
Please submit application information by using the contact form on the main
page of the Unlocking Autism web page (www.unlockingautism.org)
More information may be requested, as each individual airline has their own
requirements for applying.
All applications are subject to review by participating airline carriers.
Travel grants are based on need, flight schedules, and availability frequent
flyer mile donations.
If you would like to donate your frequent flyer miles toward travel for
children with autism please check the box on the website and you will be
contacted.
UNLOCKING AUTISM
"One Door ...One Child...At A Time"

Sorry for the off-topic post, but there seem to be a number of people
planning trips to CA. Here is a link to a story about things to do in
Orange County - "Beyond Disney".
http://www.msnbc.com/news/607651.asp?0dm=C13VL
By the way, I am "a local" and I took both my boys to see Dr. Goldberg
today - one was a first time visit, the other a follow up. Everyone in the
office was so nice to us. But due to the busy schedule, appointment times
were running a bit late and I would recommend that folks bring snacks, toys,
books, etc. to the office, especially for first-time visits which take a
while. Also, if you plan on staying in Orange County, allow for 1.5 to 2
hours to drive from there to Tarzana - longer for rush hours (before 9:00am
and after 3:00pm). The thing about L.A. is that we don't measure distance
in miles, but in driving time.
Best wishes,
Vicki

Thanks so much for the article. Upon cursory reading I think it adds more
fuel to my particular fire. Genetic studies tell you what genes have gone
awry, but it does not tell you the mechanism that is occurring in the body
that results in the abnormalities. SO if you can determine the mechanism and
have an effect on that you may be able to prevent the damage or at least
minimize it. It may very well be that all of our kids have genetic
abnormalities resulting in their dysfunctional immune systems but if the NIDS
folks were spending all of their time worrying about the genes where would
our children be? Maybe I am looking at the whole thing backwards but 95% of
the research on DS in the past two years was spent on prenatal diagnosis
(something that we have been able to do for at least two decades) and nothing
spent on looking for the mechanisms... So we march on! Thanks again. Kathy
NIDS NNY

<Gary,
America West Airlines has $89.00 each way for
most cities right now, and a lot of the other airlines
have matched these fares.
We stayed at the Disneyland Hotel for a week after
our visit with Dr. Goldberg. It's not what you would
call an inexpensive vacation, but it's very convenient,
if you want to "do Disney." Right now, they have a
"Fall Getaway" special that you get a 4th night free
when you pay for 3, and a 4th day park-hopper pass if
you pay for a 3-day pass. All the Disney hotels, and
most of the offsite hotels can sleep 5 in a room. Check
out DIsneyland.com for the info. Except it to be crowded!
Another option for lodging that I haven't heard mentioned
is the Ronald McDonald house. I wonder if someone
on Dr. Goldberg's staff would be able to arrange a
referral for his patients to reserve a room when they're
in town to see him? I'm not sure if it's nearby, but there
is one in LA.
Good Luck!
Gary,
If you get anywhere with the Ronald McDonald House angle, I know that there
is one in the city of Orange, just a few miles away from Disneyland in
Anaheim.
Kim

********************************************************************************\
********************************************************************************\
********************************************************************************\
*********************************
Dr. Michael Goldberg, M.D., F.A.A.P., President, Neuro-Immune Dysfunction
Syndromes (NIDS) Scientific Advisory Board presents an informative session on:
Autism Spectrum Disorders, CFIDS, ADD/ADHD: A Medical Epidemic and The
Neuro-Immune Connection
www.nids.net www.neuroimmunedr.com
www.alasbimnjournal.cl/revistas/4/goldberg.htm
A question and answer session will follow. This event will take place on
Saturday September 22, 2001 at the Wyndham Hotel in Billerica Massachusetts at
7:00pm. Physicians, nurses, parents or anyone interested are welcomed to attend.
It is free of charge and refreshments will be provided. Please e-mail your reply
to attend and questions for Dr. Goldberg to Ry at nids.lecture@...
Specify your full name, town you live in, and the number of people attending in
your group, no later than Friday September 14th.
Directions to the hotel will soon follow. There are rooms blocked under the word
NIDS at the hotel for the nights of 9/21 and 9/22 for those who fly in for the
lecture or just want to stay overnight. The phone number for the hotel is:
978-670-7500
Thank you.
********************************************************************************\
********************************************************************************\
********************************************************************************\
***************************************b

Gary,
America West Airlines has $89.00 each way for
most cities right now, and a lot of the other airlines
have matched these fares.
We stayed at the Disneyland Hotel for a week after
our visit with Dr. Goldberg. It's not what you would
call an inexpensive vacation, but it's very convenient,
if you want to "do Disney." Right now, they have a
"Fall Getaway" special that you get a 4th night free
when you pay for 3, and a 4th day park-hopper pass if
you pay for a 3-day pass. All the Disney hotels, and
most of the offsite hotels can sleep 5 in a room. Check
out DIsneyland.com for the info. Except it to be crowded!
Another option for lodging that I haven't heard mentioned
is the Ronald McDonald house. I wonder if someone
on Dr. Goldberg's staff would be able to arrange a
referral for his patients to reserve a room when they're
in town to see him? I'm not sure if it's nearby, but there
is one in LA.
Good Luck!

Hey everyone,
Sorry to cross post, but didn't want to over look any helpful advice.
Many of you have been helping me on this long drawn out matter with my school
district, and I greatly appreciate it. They are still insisting that we have
the psych. evals BEFORE they will even write goals and do placement for fall,
which is in two weeks, for my son. He should just go on to first grade, but
they are trying to use the evals to say that he should be put in a segregated
classroom. They are totally disregarding the whole LRE thing. We did allow
them to do a speech eval, because it had been a long time and we do like his
speech therapist from the district. OF COURSE, the results showed huge gaps and
delays. He is about to turn 8, but was totally nonverbal until 3. He has made
tremendous gains, but is not age appropriate. But, that, to us, was to be
expected. AND, as usual, he did not "perform" up to par on the testing. I was
present for all of it and it makes me want to wringe his little neck. Anyway,
since we are not agreeing to the psych. testing readily (this argument is not
over with them in any way), they are now trying to use the scores on the speech
eval to say that he will not be able to function in first grade, .......
Are there any speech therapists out there or anyone else who can give us some
strategical advice on how to verbally rebut what they are saying??? Our son
does not get private speech at the moment, so we do not have a second opinion.
Thanks,
Trina

Trina -
I don't understand the connection between the speech/language scores
and the placement. Our son is 10, will be going into 3rd grade this
fall, and his receptive/expressive scores are at about that of a
normal 5 year old. But he has been in a regular classroom (with an
aide) since kindergarten. He is not at grade level in any of his
subjects, but with adaptations and aide assistance is able to have
parallel curriculum materials and participate with the class in all
of their regular activities.
A big argument for us was that he needed to be in a classroom with
age appropriate peer models for his language (as well as everything
else) to improve. Our biggest issue has been with teachers -- when
the regular classroom teacher has been willing to support his
accommodations (picture schedule, sensory breaks, etc.) he has done
great. This last year especially he had a wonderful situation and
has advanced tremendously.
--Kathleen--
Kathleen J. McClatchey (Whiteman) kjm@...
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 office phone: (734) 763-8190

Dear All,
We will be travelling to California from Arlington, Texas at the end of this
month, taking our son to Dr. Goldberg for the first time. We are hopeful for
Collin's improvement based on what we have read from many of you on this list.
We also plan to take the other 2 kids and make a vacation out of it. So if
anyone knows of good airline, hotel, disney, or general entertainment deals - I
would appreciate an e-mail (send to alligager@... unless you think that the
info would be beneficial to the NIDs e-group).
thanks!
gary
PS We were thinking about disney, the beach, and universal studios.

Rainfall, temperature dips linked to infection risk
By Amy Norton
NEW YORK, Jul 31 (Reuters Health) - While it may not be possible to "catch
your death of cold," rainy and chillier-than-normal weather can affect the
odds of contracting infections via water and air, according to two new
studies.
In one study of waterborne disease outbreaks in the US, researchers found
that more than two thirds of outbreaks between 1948 and 1994 were preceded
by heavy rainfall--which can overload municipal water systems and help
contaminants spread to the drinking water supply. More than half of these
outbreaks occurred shortly after an onslaught of "extreme precipitation,"
according to a report in the August issue of the American Journal of Public
Health, the Journal of the American Public Health Association.
More than 50% of the 548 outbreaks studied involved gastrointestinal
infections. And although the US drinking water supply is thought to be
"high-quality," there remains the risk of contamination from leaking septic
tanks and agricultural runoff, according to Dr. Jonathan A. Patz of Johns
Hopkins University in Baltimore, Maryland, and colleagues.
They note that it is possible for increases in rainfall and runoff to usher
infectious agents from animal feces into the water supply.
In a second study reported on in the same issue, researchers found that when
the temperature dipped 5 degrees over several days in two California cities,
rates of hospitalization for viral
<http://www.reutershealth.com/wellconnected/doc64.html
<http://www.reutershealth.com/wellconnected/doc64.html
sharply.
Like other respiratory infections such as the flu, viral pneumonia has a
"season," with cases peaking in the fall and winter. But in the current
study, investigators found that, regardless of season, an average dip of 5
degrees in the minimum temperature over 4 days was followed by an upswing in
hospital admissions for viral pneumonia in Los Angeles and San Francisco.
The picture was different, however, in the inland city of Sacramento. There,
higher hospitalization rates were linked to a 5-degree decrease in the
maximum temperature difference--the gap between the high and low daily
temperature. In addition, in years affected by El Nino weather
patterns--which in Sacramento meant warmer autumns and colder temperatures
in the winter and early spring--pneumonia hospitalizations went up for women
but down for girls.
El Nino had little effect on the temperatures in San Francisco and Los
Angeles.
It is unclear what is behind the link between these temperature change and
hospitalization patterns, according to lead researcher Dr. Kristie L. Ebi of
the Electric Power and Research Institute in Palo Alto, California.
It could be that sudden drops in temperature send more people indoors for
longer periods, increasing the chances of transmitting viruses
person-to-person, she told Reuters Health.
On the other hand, rainfall, which would also keep people inside, was not
linked to increased hospitalizations. "There must be some other components
in weather" affecting infection rates, Ebi said.
"Changing weather variables do not cause pneumonia," she and her colleagues
point out in their report, "but they may set up conditions that facilitate
increased or decreased viral transmission."
Traditionally, Ebi said, researchers have looked at the pattern between
season and viral rates. But while her team found that pneumonia
hospitalizations peaked at the appropriate time of year, they also found
increases based on temperature dips no matter what the season. In other
words, it did not have to be cold, according to Ebi.
She said there should be more study of how short-term weather changes
influence disease risk, adding that she will next study how temperature
shifts affect heart disease. Heart attack
<http://www.reutershealth.com/wellconnected/doc12.html
found to rise slightly in the winter.
"Hopefully, this will encourage (researchers) to look at weather changes and
not just season," Ebi said.
SOURCE: American Journal of Public Health 2001;91:1194-1199, 1200-1208.

Thanks for sharing your story about taking your 6 year old off depakote. We
want very much to wean our son off. We tried before and he became so moody, it
was unbearable. We are wanting to try again. He never had visible seizures,
just abnormal sleep patterns. Thanks for the good news!

Hi Tina,
I will be in San Diego at the time of the conference and was considering
attending; only to help spread the word about NIDS. We are confirmed
believers of the NIDS protocol. Our son has been a patient of Dr G since
Jan 2001 with results that suggest full recovery in the future.
Let me know what I can do to help.
Suzanne Roelike
PS We were at the conference in Long Beach (July 14th). My husband taped
Dr G for the So CA NIDS Coalition.
From: CureNIDS2000@...

Traci,
I am new here and have not post before . Just been reading and trying to
see what NIDS is all about and if it well help my son.
But when I read about the depakote wean and your son starting to talk I
wanted to share with you that our son also has seizures and when he was 5 we
started him on the keto diet about 6 months later we were able to take him off
his depakote and although he did talk some on the depakote I can still remember
coming home from the hospital which was 3 hours away from our home and my
husband and I just sitting there listening to our son talk nonstop the whole way
home. We both had tears in our eyes from the joy of hearing so many new words
and laughing so hard talking about OK now we got him to start talking how do we
get him to stop every now and than.
Well Thank you for letting me relive that time.
Leslie
Traci,
How amazing! This is such wonderful news!
If you are on other autism lists it would be good of you to spread your
story around, who knows how many other kids might be be in a similar
situation? Could the depakote have been interfering with the prozac and or
famvir? Maybe after you took him off it, the other meds are working better?
Sara

Traci,
How amazing! This is such wonderful news!
If you are on other autism lists it would be good of you to spread your
story around, who knows how many other kids might be be in a similar
situation? Could the depakote have been interfering with the prozac and or
famvir? Maybe after you took him off it, the other meds are working better?
Sara

We've finally been able to take our six year old son completely off of
Depakote. (after a year on prozac, and five or so months on Famvir). So far,
after three weeks, no seizures. But the odd thing is, he's suddenly starting
to talk--he's picked up twenty words since we removed the depakote, and his
receptive language has skyrocketed. David was completely nonverbal until we
stopped depakote, and he had severely limited receptive language. Suddenly,
we have echolalia all over the place, from a child who has been mostly mute
for the bulk of his life.
Has anyone ever heard of Depakote as an agent that may inhibit language
development? I can't believe the sudden progress we're getting. I was close
to the point of giving up hope that David was a true "NIDS" kid, even though
the NIDS protocol literally made his little brother cognitively normal!
I'm wondering if I just wasted six thousand dollars prematurely for a dynavox
computer to assist David with his visual communications program---but if he
starts talking, I really don't care that I spent the money for the computer!
Traci

Rheumatology (Oxford) 2001 Jul;40(7):806-10 Books
Autoantibodies to a 68/48 kDa protein in chronic fatigue syndrome and
primary fibromyalgia: a possible marker for hypersomnia and cognitive
disorders.
Nishikai M, Tomomatsu S, Hankins RW, Takagi S, Miyachi K, Kosaka S, Akiya K.
National Tokyo Medical Center, Tokyo, Health Sciences Research Institute,
Yokohama and. Keigu Medical Clinic, Yokohama, Japan.
OBJECTIVE: To identify antinuclear antibodies (ANA) specific for chronic
fatigue syndrome (CFS), and in related conditions such as fibromyalgia (FM)
or psychiatric disorders. METHODS: One hundred and fourteen CFS patients and
125 primary and secondary FM patients were selected based on criteria
advocated by the Centers for Disease Control and Prevention and by the
American College of Rheumatology, respectively. As controls, healthy
subjects and patients with either various psychiatric disorders or diffuse
connective tissue diseases were included. Autoantibodies were examined by
immunoblot utilizing HeLa cell extracts as the antigen. RESULTS:
Autoantibodies to a 68/48 kDa protein were present in 13.2 and 15.6% of
patients with CFS and primary FM, respectively. In addition, autoantibodies
to a 45 kDa protein were found in 37.1 and 21.6% of the patients with
secondary FM and psychiatric disorders, respectively. Meanwhile, these two
autoantibodies were not found at all in connective tissue disease patients
without FM, nor in healthy subjects (P<0.05). As a group, the anti-68/48
kDa-positive CFS patients presented more frequently with hypersomnia
(P<0.005), short-term amnesia (P<0.07) or difficulty in concentration
(P<0.05) than those CFS patients without the antibodies. CONCLUSIONS: The
presence of the anti-68/48 kDa protein antibodies in a portion of both CFS
and primary FM patients suggests the existence of a common immunological
background. These antibodies may find utility as possible markers for a
clinicoserological subset of CFS/FM patients with hypersomnia and cognitive
complaints.
PMID: 11477286 [PubMed - in process]

Pease publish this announcement in your newspapers and newsletters:
NIDS Coalition, Northern Calif. Chapter
Resource and Support Meeting
For those affected by Neuro-Immune Dysfunction Syndromes: ADD/ADHD, Autism
Spectrum Disorder, Chronic Fatigue Syndrome/FM, Learning Disabilities,
Hyperactivity, and other related disorders
Tue, September 11, 2001 from 7:00-9:00pm
At the Rohnert Park Public Library, 6600 Hunter Dr., Rohnert Park, CA
(707)584-9121
Contact Helen Saenz-Maksutovic @ (707)586-3317 or CureBubba2000@...
For further info. or driving directions.
NIDS Coalition, No. CA Chapter (a non-profit organization)
3444 Anderson Dr.
Santa Rosa, CA 95409
(707)538-2193, Fax: (707)537-7629
E-mail: CureNIDS2000@...
Web Page: www.sonic.net/melissk/nidsnocal.html
Tina M. Hendrix
CureNIDS2000@...
President, NIDS Coalition, Northern California
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

hello!
I need some help translating a vitamin I bought today.
I found out the iron I was using with my son had Lactose
in it and I'm not overly thrilled with the coloring in
Poly Vi sol rabbits (we know the purple ones send him off)
Do any of you see anything funny in these 2 items ??
My son is GFCF, no eggs and we have to watch
the amount of citrus juices he drinks.
So far, no intolerance noted for corn or soy
If you do see something amiss, please email me
at sjsmith@...
Thanks!
doris
Maryland
xxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Nature's Plus VITA GELS
Vit A (beta carotene) 5000IU
Vit C (ascorbic acid) 50 mg
Vit D (ergocalciferol) 200 IU
Vit E (d-alpha tocopheryl acetate)25 IU
Vit B1 (thiamine HCl) 5 mg
Vit B2 (riboflavin) 5 mg
Niacin (niacinamide) 10 mg
Vit B6 (pyridoxine HCl) 5 mg
folate (folic acid) 10 mcg
Vit B12 (cyanocolbalamin) 10 mcg
Biotin 50 mcg
Pantothenic Acid (calcium pantothenate) 10 mg
Calcium (gluconate) 10 mg
iron (gluconate) 5 mg
Iodine (kelp) 100 mcg
magnesium (gluconate) .25 mg
Zinc (gluconate) .25 mg
Manganese (gluconate) .05 mg
Potassium (gluconate) 1 mg
Choline (bitartrate) 2 mg
Inositol 1 mg
PABA .6 mg
other ingredients:
gelatin glycerin purified water rose hips orange flavor
soy oil
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
The Vitamin Shoppe IRON
28 mg
iron (as ferrous fumarate, iron amino acid chelate, iron citrate)
rice flour
gelatin
water

Thanks for this posting Tina.
I notice the FEAT news letter has been absent from the NIDS list for some time.
Tina has been sending the odd one of interest through, however today one
appeared (July 30 on Alzheimer's). Will the Nids list continue to be included on
the FEAT postings?
Robert

FYI...They're getting closer............but not quite there yet!
see below
Tina M. Hendrix
CureNIDS2000@...
President, NIDS Coalition, Northern California
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.
Subj: Experts: Redefine Autism as Systemic Illness/ How to Play Camp
Date: 7/28/01 6:17:02 PM Pacific Daylight Time
From: featnews@... (FEAT News)
Sender: FEATNEWS@... (FEAT Daily Newsletter - Families for Early
Autism Treatment)
Reply-to: <A HREF="mailto:featnews@..."
To: FEATNEWS@...
FEAT DAILY NEWSLETTER Sacramento, California http://www.feat.org
"Healing Autism: No Finer a Cause on the Planet"

J Clin Invest 2001 Jul;108(2):311-8 Related Articles, Books, LinkOut
A virus-induced molecular mimicry model of multiple sclerosis.
Olson JK, Croxford JL, Calenoff MA, Dal Canto MC, Miller SD.
Department of Microbiology-Immunology and the Interdepartmental
Immunobiology Center, and. Department of Pathology, Northwestern University
Medical School, Chicago, Illinois, USA.
Molecular mimicry is the process by which virus infection activates T cells
that are cross-reactive with self antigens. Infection of SJL/J mice with the
neurotropic picornavirus Theiler's murine encephalomyelitis virus (TMEV)
leads to a progressive CD4(+) T cell-mediated demyelinating disease similar
to multiple sclerosis. To study the potential of virus-induced molecular
mimicry to initiate autoimmune demyelination, a nonpathogenic TMEV variant
was engineered to encode a 30-mer peptide encompassing the immunodominant
encephalitogenic myelin proteolipid protein (PLP139-151) epitope. Infection
with the PLP139-151-encoding TMEV led within 10-14 days to a rapid-onset
paralytic demyelinating disease characterized by PLP139-151-specific CD4(+)
Th1 responses; insertion of a non-self ovalbumin sequence led to restoration
of the normal late-onset disease. Early-onset disease was also observed in
mice infected with a TMEV encoding PLP139-151 with an amino acid
substitution at the secondary T cell receptor (TCR) contact residue (H147A),
but not in mice infected with TMEV encoding a PLP139-151 substitution at the
primary TCR contact (W144A). Most significantly, mice infected with TMEV
encoding a Haemophilus influenzae mimic peptide, sharing only 6 of 13 amino
acids with PLP139-151, displayed rapid-onset disease and developed
cross-reactive PLP139-151-specific CD4(+) Th1 responses. To our knowledge,
this is the first study showing that a naturally infectious virus encoding a
myelin epitope mimic can directly initiate organ-specific T cell-mediated
autoimmunity.
PMID: 11457884 [PubMed - in process]

Someone form NIDS needs to be here. any so. Cal. takers?
Tina
The Autism Research Institute Presents:
DEFEAT AUTISM NOW! (DAN!) SEVENTH ANNUAL CONFERENCE
October 5, 6, and 7, 2001
an Diego, California Town and Country Resort and Convention Center
Cutting Edge Biomedical Information From The World's Leading Experts
TOPICS INCLUDE:
Toxic Metals in Autism: Focus on Mercury
Secretin
Immunizations: Practical Safety Issues
Transfer Factor
The Role of Special Diets and Supplements
Prioritizing Interventions
Digestive Enzyme Inhibition
Omega 3 Fatty Acids
IVIG Virus
Vaccines and the Gut (Latest Information on MMR)
SPEAKERS INCLUDE:
Sidney Baker, M.D. ⢠Jon Pangborn, Ph.D. ⢠Sudhir Gupta, M.D., Ph.D.
⢠Andrew Wakefield, M.D. ⢠Bernard Rimland, Ph.D. ⢠Paul Shattock,
Ph.D.
⢠Jeff Bradstreet, M.D. ⢠Karl Reichelt, M.D., Ph.D. ⢠Karyn Seroussi
⢠Kenneth Bock, M.D. ⢠Stephanie Cave, M.D. ⢠Jane El-Dahr, M.D.
⢠Amy Holmes, M.D. ⢠Paul Hardy, M.D. ⢠James Laidler, M.D.
⢠Woody McGinnis, M.D. ⢠William Walsh, Ph.D. ⢠Andrew Stoll, M.D.
⢠Jayne Barese, R.N. ⢠Mary Megson, M.D. ⢠Walter Herlihy, Ph.D.
⢠And Special Presentation by FEAT Daily Newsletter Editor Lenny Schafer
For licensed practitioners: On Friday, October 5th, there will be two
practitioner training sessions (beginners and advanced) for those
professionals who wish to incorporate the DAN! protocol into their
practices. Continuing education credits will be available for M.D.'s,
psychologists and nurses.
For new parents: On Friday, October 5th, there will be a full day
workshop to give parents step by step practical information on testing
procedures, diet, supplements and the safest and most effective biomedical
interventions.
On Saturday, October 6th, and Sunday, October 7th, both professionals
and parents will convene in a general session to hear the foremost
cutting-edge researchers present their latest findings.
For Further Information Call: 609-921-3717 Fax: 609-921-6569 Email:
DanRegistration@... To Register for the Conference Coming Soon
To Make Hotel Reservations: Call 800-772-8527 There is a 3-tiered room
rate depending on location, $99.00 - $119.00 for single or double occupancy
AUTISM RESEARCH INSTITUTE
Bernard Rimland, Ph.D., Director
4182 Adams Ave.,
San Diego, CA 92116
Fax: 619-563-6840
RESEARCH THAT MAKES A DIFFERENCE: SINCE 1967

In a message dated 7/26/01 10:29:39 AM Pacific Daylight Time,
zeches1@... writes:
Anne,
I will keep you posted on the outcome of this idea. Thanx,
tina
Tina M. Hendrix
CureNIDS2000@...
President, NIDS Coalition, Northern California
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

What is Famvir?
Julie Lavandowska

Does anyone know why Dr. Goldberg is not speaking at the DAN conference in
San Diego in October? He did speak at another conference in Des Moines, IA,
and even though he is not a DAN doctor, his speech was well received, and
that is where I heard him and now am going to see him with my son in October.
Julie

I am really beginning to wonder about kids being diagnosed as fragile X,
etc. Could many of them be helped in the same ways? Are they giving them
no hope when maybe there is?
Kathy, I know you have a special interest in the subject below. It would be
wonderful if Downs kids could benefit from NIDS. It wouldn't change the
genetics, but possibly help them to function better and maybe prevent
further deterioration.
Brain Res Bull 2001 May 15;55(2):313-7 Related Articles, Books, LinkOut
Immune-endocrine status and coeliac disease in children with Down's
syndrome: relationships with zinc and cognitive efficiency.
Licastro F, Mariani RA, Faldella G, Carpene E, Guidicini G, Rangoni A,
Grilli T, Bazzocchi G.
Department of Experimental Pathology, University of Bologna, Bologna, Italy
Immune defects, thyroid abnormalities, plasma zinc levels, and the presence
of gastrointestinal disease were investigated in 43 children with Down's
syndrome (DS). Peripheral T lymphocytes with the phenotype of helper cells
or cluster of differentiation 4 (CD4) were decreased. Circulating activated
T cells (CD3/HLA-DR-positive cells) and large granular lymphocytes
(CD16/CD56 positive cells) were increased. Plasma levels of interleukin-6
were higher in DS children than in controls. Serum levels of
thyroid-stimulating hormone were increased in DS. Coeliac disease was
over-represented in the group of DS children and many of these children also
showed increased serum levels of immunoglobulin-G (IgG) specific for gliadin
antigen. The increment of serum interleukin-6 was age-related and correlated
with anti-gliadin IgG levels in DS. Plasma zinc levels were lower in DS
children with coeliac disease and in those with anti-gliadin IgG than in DS
without detectable anti-gliadin IgG. Dietary antigens may represent a
continuous stimulus for the immune system in this syndrome and interfere
with normal immune responses. Altered intestinal absorption of nutrients may
in turn affect endocrine functions, brain development, and cognitive
performances.
PMID: 11470333 [PubMed - in process]

To All NIDS members,
Please let me hear from some of you in regards to
good schools believing in the NIDS protocol. As far
as the East Coast .. our kids are labeled "Autistic"
and can only go so far, they are not looked upon as
having a "Medical Condition".
Please respond as quickly as possible for I am
anxious to hear from someone. Thank you.
Sincerely,
Michele Davies
isoaa@...

Hi Doris,
I would love to see your 'working aid' file :)
We are going for a visit in October.
Thank you,
Vera
-

Tina,
I think it's a great idea to ask Dr. G to come up to the San Fran area.
Although we live in Wisconsin and will be seeing him for the first time in
October, I would rather go to SF than the LA area. My husband used to live in
Marin and my brother now lives in SF. I would be very interested if you could
get something like this started.
Thanks,
Anne
"Doris and group,
here's a brainstorm idea. Maybe not complete or workable to everyone,, but
an idea. How about if Dr. Goldberg flew up to San Francisco 3-4 times a year
and saw patients at Dr. Giffith's office, located just north of San
Francisco, in Greenbrae, CA. Dr. Griffith is one of the NIDS Medical Board
members, and has offered her office as a future NIDS clinic.
Southwest airlines offers cheap flights (sometimes as low as $39 ea. way) from
Burbank to S.F.O. or Oakland. He could stay here a couple of days and see
patients, then give a talk in No. CA.
I also have an extra room in my home and live about 40 min. (a pretty
straight shot on the freeway) from Dr. Griffith's office. I'd be willing to
invite a family into my home that lives out of the area to spend their visit
with us instead of having to rent a motel. And, to invite the family to eat
meals with us as well. There are other families near me that would be
willing to extend this same invitation, to assist in accommodating those who
would like to forego the cost of lodging and dining out.
Southwest offers rates as low as $99.00 ea. way per person from any point in
the USA they serve to any destination they serve. As well as other airlines
who give special internet promotional fares. Rental cars are as cheap as
$25.00 per day. I would also to be happy to pick families up at the airport
and transport them to their host family/hotel room and assist in providing
transportation to see Dr. Goldberg in Greenbrae, if the rental car was cost
probative to their budget.
Yes, I do have an underlying agenda here. I wouldn't have to travel back
down to L.A. to see him. So this would benefit our families, and his other
patients from up here as well. And, he would be up here for talks which
visiting patients' families could attend also.
Please, just give this some thought. I haven't approached Dr. Goldberg or
Griffith yet about it, so lets brain storm and see what we can come up with
to help each other out. If we come up with something that is agreeable, then
we can present it to the docs involved. ( I am sending them a copy of this
mail).
Tina
Tina M. Hendrix
CureNIDS2000@...
President, NIDS Coalition, Northern California
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc. "

Hello,

Doris -
We also just started giving our daughter 1/4 tablet twice a day. We were
previously giving her 1/2 tablet twice a day. She has always liked to chew
on things, but all of a sudden she is back to chewing on everything including
books. Could this be from the reduction in Famvir?
Bonnie

Hello,
I would like to receive these messages in another email account. Please tell me
how.
Thanks,
khaclong@...

Thanks, everyone, for your responses. Dr. G. thought this was a good thing for
my daughter. She is moving out of brain fog go with the flow whatever to
knowing what she wants!
Courtney

hello!
As per Dr Goldberg's request, we are slowly withdrawing our son
from the antiviral. He's been on it for just a little over a year.
- Have any of you done this?
- Did your child(ren) experience stomach upset/diarrhea??
We're down to 1/2 tablet 1x a day
we've been having a few potty issues today
please email if you have any information
sjsmith@...
Thanks!
doris
millersville MD

I'm not getting any mail from this group. I am just checking to see if there
is a problem.
Thanks,
Tracy

Courtney and Kathleen
My son is now twelve and recovered. Believe it or not the tantrums are a good
sign. It means they are aware and care about the world around them. Before we
got better, we got worse. When I first started Dr. G and ABA, I saw this kid
who was always so sweet become very defiant. He was fighting getting better all
the way. I just had to be more stubborn than him (which you know is a very
difficult task). The intelligent ones try to control their world. As hard as
it is to find, try to reward the positive behavior and pretend you don't see the
rest. Withdraw your attention when there is a tantrum if you can. Don't try to
solve it all at once. Pick one behavior to work on and ignore the rest. Work on
it until it is gone and then pick another one. I usually chose the one that
bugged me the most to work on.
It was interesting I had my son compliant at home, but he knew I wouldn't do
anything when we were out. That was when I called a friend and asked for help.
She told me that she was known to put her kid through the drills in the middle
of the grocery store, but she usually tried to find a bathroom. This is the
hardest thing you will ever do. But if you don't, your kid doesn't have a
chance at being normal. My name is Marcia, please e-mail me if I can help.
Someone once helped me and I hope when your kid is better, you will help someone
else.
Marcia

What does Dr G say? Nicky has been on Valtrex for 3 months with no adverse
issues to date.
Suzanne
From: "Courtney Stillman" <courtneycns@...

Thank you, Cheryl, this makes sense!
Tina M. Hendrix
CureNIDS2000@...
President, NIDS Coalition, Northern California
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

Dr. Goldberg has just suggested that we come out for a Brain Spect scan on
my son. As we have not progressed well after 18 months on the protocol, I
am anxious to do anything that might shed some light on my son's illness so
that it can be treated effectively. I would love to hear other's experience
with the Spect scan to understand how the information gained helped in
knowing the best treatment. Also, did you have problems getting your child
to hold still for so long, or was your child sedated?
I am not sure how the "Brain Spect" differs from a Neuro Spect scan.
Thanks so much!
Connie

Connie, how old is he?

Over the past couple of weeks ( weeks 5 and 6 on valtrex), my daughter, once
very compliant and sweet, is turning into a monster- throwing things, major
tantrums, screaming. Is this supposed to happen?
Courtney

This is another example of why we need to expedite the NIDS studies. With
markers we will have a way to determine who is at risk for abnormal immune
reactions. I always felt that if thimerosol had any connection to the
problem it was immune related not heavy metal poisoning. This is where the
genetic susceptability ties in. Some of us are more susceptable to immune
stressors than others.
Now that they have removed the preservative, that will be one less stressor.
For those susceptable to immune dysfunction they can look at altering
immunization schedules while still protecting against some serious diseases.
Cheryl
J Autoimmun 2001 May;16(3):319-26 Related Articles, Books, LinkOut
Induction of autoimmunity through bystander effects. lessons from
immunological disorders induced by heavy metals.
Fournie GJ, Mas M, Cautain B, Savignac M, Subra JF, Pelletier L, Saoudi A,
Lagrange D, Calise M, Druet P.
Institut National de la Sante et de la Recherche Medicale (INSERM) U28,
Institut Federatif de Recherche (IFR) 30, Hopital Purpan and Universite Paul
Sabatier, Toulouse, France
Autoreactive T cells exist in healthy individuals and represent a potential
reservoir of pathogenic effectors which, when stimulated by microbial
adjuvants, could trigger an autoimmune disease. Experimental studies have
indicated that xenobiotics, well defined from a chemical point of view,
could promote the differentiation of autoreactive T cells towards a
pathogenic pathway. It is therefore theoretically possible that compounds
present in vaccines such as thiomersal or aluminium hydroxyde can trigger
autoimmune reactions through bystander effects.Mercury and gold in rodents
can induce immunological disorders with autoimmune reactions. In vitro, both
activate signal transduction pathways that result in the expression of
cytokines, particularly of IL-4 and IFNgamma. In a suitable microenvironment
heavy metals could therefore favour the activation of autoreactive T cells.
In that respect, genetic background is of major importance. Genome-wide
searches in the rat have shown that overlapping chromosomal regions control
the immunological disorders induced by gold salt treatment, the development
of experimental autoimmune encephalomyelitis and the
CD45RC(high)/CD45RC(low)CD4(+)T cells balance. The identification and
functional characterization of genes controlling these phenotypes may shed
light on key regulatory mechanisms of immune responses. This should help to
improve efficacy and safety of vaccines. Copyright 2001 Academic Press.
PMID: 11334498 [PubMed - in process]

Lack of association of the (AAAT)(6) allele of the GXAlu tetranucleotide
repeat
in intron 27b of the NF1 gene with autism.
Plank SM, Copeland-Yates SA, Sossey-Alaoui K, Bell JM, Schroer RJ, Skinner
C,
Michaelis RC.
Am J Med Genet 2001 Jul 8;105(5):404-5
Presbyterian College, Clinton, South Carolina.
A novel allele of the GXAlu tetranucleotide repeat in intron 27b of the
neurofibromatosis 1 (NF1) gene has recently been reported to be present in
4.7%
of autistic patients but not in controls. We have found the novel GXAlu
allele
absent in 204 patients from the South Carolina Autism Project and 200
controls.
The autism population studied includes a significant number of patients with
hypotonia, stereotyped behaviors, or postural, gait, and motor abnormalities
similar to those seen in the patients previously reported to possess the
novel
GXAlu allele. This suggests that the novel (AAAT)(6) GXAlu allele is not
associated with autism. Copyright 2001 Wiley-Liss, Inc.
PMID: 11449390 [PubMed - in process]

great find, Tina

Tina,
Nothing in the post. Please send it to me directly.
Marc

Here's one to attend for a NIDS parent. Often times you can set up an
information booth about NIDS. This is the audience we want to reach!
Tina
Tina M. Hendrix
CureNIDS2000@...
President, NIDS Coalition, Northern California
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

Bornavirus and Neuropsychiatric Illnesses Like Autism
Bornavirus tropism and targeted pathogenesis: virus-host interactions in a
neurodevelopmental model.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_ui
ds=11450312&dopt=Abstract <-- Address ends here.
1: Adv Virus Res 2001;56:557-82
Hornig M, Briese T, Lipkin WI.
Emerging Diseases Laboratory, Gillespie Neuroscience Research Facility,
University of California, Irvine, California 92697, USA.
Animal models provide unique opportunities to explore interactions
between host and environment. Two models have been established based on
Bornavirus infection that provide new insights into mechanisms by which
neurotropic agents and/or immune factors may impact developing or mature CNS
circuitry to effect complex disturbances in movement and behavior. Distinct
losses in DA pathways in the adult infection model, and the associated
dramatic movement disorder that accompanies it, make it an intriguing model
for tardive dyskinesia and dystonic syndromes.
The neuropathologic, physiologic, and neurobehavioral features of BDV
infection of neonates indicate that it not only provides a useful model for
exploring the mechanisms by which viral and immune factors may damage
developing neurocircuitry, but also has significant links to the range of
biologic, neurostructural, locomotor, cognitive, and social deficits
observed in serious neuropsychiatric illnesses such as autism.
PMID: 11450312 [PubMed - in process]
Tina M. Hendrix
CureNIDS2000@...
President, NIDS Coalition, Northern California
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

Hi all, about a week ago and then again tonight my 7 year old told me his
belly button hurts. I assume this means something inside located behind the
belly button. Anyone know what's there (stomach, liver, intes