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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Friday December 21, 2001
INDEX:
* NOTE by: Michael
J. Goldberg, MD, FAAP
* Autism Proposed Work-ups NIDS
* KIDS Into the New Millennium: Science SCIENCE
* Blair hails school for special needs children
* Blair silent over MMR jab for Leo
******************************
NOTE by: Michael J. Goldberg, MD, FAAP
With
apologies for not jumping in more frequently, I am going to try to jump in at
least weekly or biweekly with comments on recent postings and / or issues
coming up within the practice. By doing it this way, I hope I can take a
regular part in the activities of this list, and help all of you bring this
effort together – we are so close, but . . . .
And that is the start, with the hearings in Washington; the good news is there
is little (if any) opposition to the idea we are dealing with a different
syndrome from "traditional" autism. Unfortunately, based on my
experience at the NIH and the rally, it is obvious that the “gap” is still in
the idea that while many are recognizing this as different, “triggered,” and
likely a disease process, I believe that few understand that this means an
ongoing “evolving” disease process vs. the concept of a static encephalopathy
or fixed condition.
The good news is that we may be very close to bridging that gap in
understanding (I would dare say the “switch” was hopefully thrown at the
hearings for a few of the NIH people there). The bad news is that while the
establishment might be swayed into dealing with the real crisis, if confronted
with solid and real science, (even if that means a “paradigm” shift in
thinking) it will fight adamantly if assumptions are thrown out that do not
make sense or are not supported scientifically.
For example, looking at the current vaccine “crisis”: IF one is foolish
enough not to recognize that there is a temporal relationship between what is
happening to some of these children and “vaccine stresses,” (in the midst of an
enlarging truly horrible epidemic), then that person, congressman, or
researcher is going to begin to look pretty foolish. But if that persons
is given the opportunity to fight, and they are confronted with statements that
won’t be supported by science (i.e. implications that the vaccines are the
cause of this crisis / epidemic), then they will be able to use “real science,
real facts”, to prove these accusations wrong, feel like they have won another
“skirmish, while in reality merely continuing a fruitless battle, nobody will
really win in the end.
I went back to Washington with the ability to safely say that with funding and
manpower, we could have 1 to 4 new agents in trial within the next 6 to 8
months for your children (that is still dependent upon funding and hiring
support personnel, but that is now the ONLY contingency). However, as
many of you are aware, I have always stressed that to get a pharmaceutical
company to look at your children now (NOT after years of adult work) was
something that had never happened before (but COULD happen now). With the
science falling into place, and the “logic” looking appealing, if a “class
action lawsuit” (over the MMR link) is undertaken, it is likely that every
pharmaceutical company and organization would go into a defensive holding
pattern, possibly stopping any chance at new trials for your children.
WE need the pharmaceutical companies, the Academy of Pediatrics,
and others in the “system” IF we are to have any chance to change this fast
enough for the majority of children out there. The next few months
are likely to be critical for all of you and your children.
Other comments include:
· Comments made regarding the fact
there is no association of “wild” (more virulent, more severe) measles, mumps,
or rubella causing Autism, is only one of the many logical scientific
observations that argue adamantly against a direct connection to the MMR.
Rather, I would urge all of you to make that “step back” – look at the “big
picture” and realize the logic here is a predisposed population, SOME of whom
may have a temporal relationship, but not causal relationship
from a vaccine injection.
Additionally, IF truly vaccine connected, the numbers would be significantly
higher than they now are – again “common sense.” Computers are one of the strongest
tools for “redeveloping” these children’s brains and thought processes –
efforts should be enlarged to reach out to other organizations, perhaps
computer companies, to help provide computers for the many children and
families that can not afford them for the purposes of “cognitive
rehabilitation.” (imagine the CD ROM’s that could be created to help . .
.)
As noted above, congressman Waxman (and otheres) can be made to look very
foolish for not helping congressman Burton solve this crisis, but NOT if given
the ammunition of the NIH, CDC, Academy of Pediatrics and others to “refute”
the “assumptions” being presented.
It may seem like only “semantics” – but how things are said, and what
assumptions are made, are “critical” if we’re going to “help” the system change
quickly, rather than having to fight over this for years to come.
While the finding of measles viral particles may be a good scientific fact,
since they were also present in ¾ Ulcerative Collitis / Crohn’s Disease
patients, and since some of the MMR cases had already begun their regression
BEFORE the vaccine, it is NOT reasonable to say this establishes a “causal”
relationship.
WE must demand common sense, logic, good science, and focus the “fight” and
treatment efforts constructively.
The fact that there are comments regarding connections to the DPT, Hep B, etc.
again leads one to realize the stress of a vaccine may be a trigger in
different children, but it is not THAT vaccine, that “organism” that is the
real reason.
I do believe we can wake up the establishment at this point very quickly – but
you have to know how to “beat it at its own game.”
This was the reason for the creation of the NIDS Medical Research Board – we
have the ability, the expertise and the scientific credibility to help
all of you change this now (and likely have the “establishment” join in!!
“Molds” and other non listed impurities should raise a level of caution with
all of you
A common impurity apparently in many brands of St. John’s Wart and “other”
products is the same impurity that caused an immune triggered eosinophilic
state, killing some adults in the Southwest in the late 1980’s (remember
the “tryptophan scare – it was not the tryptophan, it was the “impurity”)
I believe you should have a healthy skepticism of any new or old nutritional
product without studies either showing proof of efficacy or starting as a
pharmaceutically pure product. This is not very likely at the present
time. The clock is ticking for these children,
MJG
Michael J. Goldberg, MD, FAAP
Autism First steps Daily Newsletter/Newspaper will print and help with media
coverage for these endeavers.
******************************
Michael J. Goldberg, MD, FAAP
The following are the proposed work-up test for NIDS that Dr. Goldberg
recommends that you have done. These can either be done by Dr. Goldberg’s
office or by your own pediatrician.
The Most Important Test:
CBC
Sedimentation Rate
CMV IGG / IGM (if IGG Positive)
ANA Titer
EBV IGG / IGM (if IGG Positive)
Hypothyroid Panel
Ferritin Level Immune Panel (to include)
Total & Percent CD4
Total & Percent CD8
Total & Percent CD16 / CD56
Total & Percent CD19
Lead Level
Vitamin B-12 Level
Folic Acid
Comprehensive Metabolic Panel
SGOT / SGPT
Lipid Panel
Candida Titer (IGG, IGA, IGM (Immunodiagnostic Labs (800-888-1113)
HHV6 Titer (Immunodistic Labs)
Quantatative Immunoglobulins (IGG, IGA, IGM, IGE)
Gliadin Antibodies
Alpha Interferon
Allergy Food Screen (95 foods) (Meridian Valley Lab (253-859-8700) Optional
/ Userful
Thyroid Antibodies
Herpes I & II IGG / IGM
Rubella IGG Titer
Coxsakie Virus A & B
http://www.neuroimmunedr.com/NIDS/Proposed_Work-Up_NIDS/proposed_work-up_nids.html
******************************
KIDS Into the New Millennium: Science
SCIENCE
says:
Epidemic can NOT be due to a developmental or genetic disorder
*ONE MUST have a disease process at work.
The ONLY possible CAUSE for this type of disorder / dysfunction has become
immune and / or viral in origin.
This was apparent as far back as a major research symposium October 1997 since
then basic science keeps supporting "neuro immune" as the only
logical pathway for most l all of these children.
The NIDS hypothesis has been validated by multiple reviewers to date. This IS
not a metabolic disorder in origin therefore metabolic "findings" are
secondary not primary factors.
Vaccines may be possible "triggers" but they are NOT the cause of
this disorder I epidemic. There is too much data over decades supporting the
lack of "causation." But, action as a potential "trigger"
is open to scientific investigation (in some cases).
New agents, working directly on the "neuro-immune" pathways (safest
manner for children and adults) are possible now. Not by waiting for the
science of "Autism" to catch up, but by applying to these children
now what has thankfully been evolving "scientifically" in other
fields to date. As trials are about to get underway with new immune modulators
for adults, we have a chance to help see children evaluated along with the
adults, rather than years after. This has NEVER happened before, but can happen
NOW, this year. BUT, as I have written and discussed, as has always true, NO
Company is going to "gamble" all investing potentially millions in
new drug protocols, especially with children, UNLESS there is a hard,
scientific process to make possible very "objective" data, for the
FDA, etc., Thanks to the expertise represented in the NIDS Medical Board, this
is possible NOW.
As new information emerges strengthening our understanding of the
"neuro-immune system" and its influences, regulatory responses,
feedback loops, etc., it has become logical and undeniable that this will
ultimately be the route to understanding the key dysfunction in tie children
being labeled "Autistic Spectrum" (and many other cognitive
dysfunctional states in children and adults). The only question is, will it be
applied to help children now, or will the children (and their families) have to
"wait" many more years till the "system" is ready. Unfortunately,
under the normal evolution of science (even accelerated), our
"system" is still many years away before thinking agents like this
would be "ready" to be investigated "knowledgeably" in
these children. ONE day that will happen, it is inevitable, it has only become
a question of how soon. Why not NOW?
Happily (or sadly depending upon what happens), the NIDS Board can help make
this change and happen now, but continues to wait for funding and support to
move ahead. The NIDS Board represents researches that have already been working
in the field 'of "Neuro-immune" for the last 15 - 20 years, and
together with the rapid application of . solid science represent a chance to
"leap frog" the "system" for your children. So, as we enter
the new millennium, what's wrong?
At a recent research meeting I attended, it became obvious that we need to be
able to reach out to groups like the American Academy of Pediatrics, hopefully
help them Wake up to the gravity of the situation, and then be able to get
their support (and other groups in organized medicine) to deal with this as the
crisis, the grave epidemic it has surely become. But instead we lose chances
for their support, alienate them by "unscientific" allegations, and
"convoluted" hypothesis being currently proposed by many autistic
"experts." Do we want to spend years fighting "battles"
that needn't be, that in the end are not going to be the "big
picture" anyway. (Note: at this "mainstream" pediatric update
conference were discussions of the "expanding" role of HHV6 disease in
children and discussion about an "allergic -- autoimmune
encephalitis," topics that would never have been discussed even a few
years ago.) In the coming years, there are going to be many fascinating
"side" connections, new information and details to define, but the
key now, is to focus on "therapy application," build upon what makes
sense now, while we pursue these further details, not while we fight over them
(due to many "false' accusations or assumptions), or prepare to study them
(many good researchers are beginning to pursue many of the "pieces"
of this puzzle), but would still wait to apply therapy till WE
"understand" things further,
We need to focus behind the NIDS Medical Research Board as a path to trials
with new agents within the next 6 - 8 months, not 10 years. Unfortunately. IF
this fails, then it may well be 10 years or longer (the number used at recent
conference) before any significant new safe, "directed" therapeutic
approach is possible. If we start from "scratch" then that time
course is certainly realistic. The "autistic" field is still
scattered in many directions, unfortunately increasingly chasing ideas that
will likely be dead ends, or "pieces" of the truth, but not attacking
the "big picture." Why is that true? With the rapid acceptance that
has become an "epidemic," science says you cannot have an epidemic of
any type of developmental or congenital disorder, it is IMPOSSIBLE, it has
become Illogical? Therefore, any researcher currently looking and submitting
research projects based on "Autism - a developmental disorder" is not
looking at What is really happening in a vast majority / ?? all the
children being labeled "Autistic Spectrum Disorder." This no longer
makes any sense.
There are additional huge implications from the statement, "this IS a
disease" (NOT a Developmental disorder, a congenitally
"miswired" brain, etc.)
1.
"Disease"
means these children were born with normally functioning brains that became
dysfunctional. That means they can be fixed, in theory they can work normally,
again.
i. You cannot "fix" I recover from a developmental disorder, you can
from a disease. / This has profound implications in light of the work from
leading institutions showing the brain is more pliable than we thought
(implying late redevelopment is still possible) and the importance of early,
correct laying down of pathways / tracts - as the brain evolves and develops.
ii. WE need to focus on
the idea of "redeveloping" a child's brain, not "training"
an "autistic" brain
iii. Parents are told there children can never fully "recover," - as
a disease, we must expect recovery, hopefully be able to one day use the word
"cure."
2. An educator or child development specialist looking at these children, must
understand the concept of a "dysfunctional, but potentially normal
brain" if they are truly going to be able to look at how to maximize each
child's development.
1. I have
personally been appalled over the last few years at the lack of expertise in
the "autistic" field available to truly help parents redevelop,
reeducate their child's brain. I am sure these specialists exist, but in
general they have not been in the circles accessible to parents at present, OR
have not looked upon these children for what they really are.
i. To listen to an
educational therapist who truly understands how to assess and work with the
various "highs and lows" in how these children's brains are working,
is impressive; much less a speech pathologist who understand the apraxia, and
how to work with the oral motor dysfunction dominating these children (when you
stop thinking of them as "autistic").
2. Unlike the
"old" ideas of NOT expecting speech development past?? 5 or 6 years
old, this means older children (10 - 14 years old / clinical experience to
date), can be helped to redevelop speech.
i. When looked upon as a disease, this should be expected, not hoped for or
discounted as "impossible."
3. Behaviorally, it has become apparent that one must treat these children age
appropriate for where they are psycho socially, not chronologically, not as
"retarded."
1. With the
realization that most of these children are truly intelligent. . .
i. Much of the negative behaviors seen, are because these children are not
"disciplined" as one would discipline a normal 2, 4, 6 years old
child (again where is the child psycho socially, not current
"calendar" age) or are outright miserable, in pain, frustrated,
angry, and NEVER looked at or truly understood in that way
One day we are all going to realize what a true tragedy this has become. How
many I most of these children are "miserable" I physically suffering.
If it's going to happen (and every scientific pathway is toward neuro-immune,
an understanding of this as a disease) one day, why not NOW (before many more
children are truly not recoverable). Unfortunately, "problems"
continue to exist, which are working to slow down the rapidly needed change
for;- all the children and families out there:
1. As illustrated above, every
"assumption" made not based on good, solid medical science only
serves to mobilize "academic" medicine against these efforts, instead
of helping correctly focus on this crisis (and potential real solutions).
2. Many current efforts report
"improvements" / "success"
a. unfortunately, many "remedies" can create some "success"
IF graded in terms of their child starting off "autistic,"
metabolically dysfunctional, etc. - but these "success" stories in
general do not come close to a real "normalization" of an
"ill" child ii. Again, sights, expectations, measurements of
"success" are changed dramatically if one recognizes the disease
process going on here (scientific), not the old idea of a developmental
disorder, developmentally mis-wired brain (now illogical, sci-fi).
3. Since this is not starting
as a developmental or metabolic disorder (immune / viral are the only possible
"causation" pathways scientifically), then treatment metabolically
may help, but does not have the potential to truly fix this type of dysfunction
a. IF thought
of as a disease, then again, the bar of judging success (AND safety; changes
dramatically
b. You only
beat, solve, potentially cure a disease by treating the etiology / causation,
NOT the after effects
4. Parents are afraid:
a. Yes, it, has now come up in many discussions that one of the reasons for the
failure to focus and mobilize quicker around the NIDS effort, is the fear of
all the promised answers before, the false hopes of the past. I have had
parents discuss the "pain" of having to "again" reevaluate
a child's life, expectations, problems, "knowing" higher goals are
possible / realistic, NOT impossible. but still sc. difficult to obtain. iii.
Unlike any effort in the past, the NIDS effort is based on science, new
information, new technologies
1. While l
can be pointed to merely as another "clinician," the NIDS medical
board is composed of researchers who are leaders in their fields, who would
never gamble their reputation or prestige on doing any study that was not based
on hard, good, science and logic.
a. As noted
above, the NIDS hypothesis has been validated by every pharmaceutical company
that has reviewed it to date.
2. At this
point in time, unfortunately, it is far more likely parents are one day going
to be very upset for "believing" the current Autistic efforts, and at
those groups / leaders for not "focusing" on neuro-immune faster, or
recognizing its role I place, rather than those who have begun to follow a NIDS
direction
a. This is SCIENCE, this is becoming / will become reality
So how do we make this change?
Enough parents must focus around the NIDS effort that we can overcome, bypass
the unfortunate "opposition" / negative momentum to change that
exists presently This is finally possible, but as noted above, will not happen
without effort, help and support for the NIDS Medical Board.
IF financial goals are met (a total business package of - $750,000 - see www.nids.net for more information ) there
is a standing commitment for at least one (optimistically more; company with an
immune modulator, to initiate trials for the children in a maximum of 6 - 8
months (from when the money is in place, and the network begins to come
together) c This is an unheard of opportunity for all the children out there,
but will not occur without successful implementation of the NIDS Business plan,
and support for the KIDS Medical Research Board's efforts.
• We must demand,
insist that any significant allocation of funding, etc. be based on the
"disease" state occurring, and focus funding on researchers beginning
to look that direction, not still pursuing the old ideas of a developmental
disorder
An unprecedented opportunity is possible as we enter the new millennium, IF we
can "focus" upon a radically different, but now scientifically
logical approach for the children, rather than continue to pursue old ideas,
that no longer hold scientific logic. Changes can occur quickly. While I have
said and written "patients, parents, have never before truly changed the
course of medical therapy," that can be made to happen now. Through
application of solid, good science, but via the connection (thanks to
technology) of outstanding, leading researchers (not limited to one university
set of connections), we enter the new millennium with a chance to truly
radically, make this change happen, succeed now-. As noted many times, the
formation of the NIDS Medical Board was done to assure all of you by the level
of researchers involved, that there will truly be a scientific level that will
be appropriate, unchallengeable, but accelerated clinically in favor of your
children.
What happens at this point is purely up to those of you able to read this
(sadly, many organizations and groups continue to resist posting or presenting
information, facts, that do not fit what they want their supporters, members to
hear). There are NO medical or logistical obstacles (short of adequate funding
and finding the appropriate research assistants, staffing, etc.) stopping this
from occurring in the next 6 - 8 months, BUT if many parents remain unaware of
this option, or continue to be told "it can't occur," when in reality
(as presented at the NIDS conference Bethesda, June 1999) this can occur, it
truly will not just happen '. (this is not how the "system" normally
works). This STILL represents a major jump in academic focus and assumptions.
It will not just happen by wishing or by itself (this is not the
"natural" evolution of medicine), but with support, help, it CAN
occur. With it will hopefully come the increased focus by new therapists with
an understanding of rehabilitation in children, and a change in focus by existing
therapists and the education system, such that we truly begin to understand how
to maximize a child's development and potential, not hope to "train"
a child with Autism (remember: you can't cure / fix a developmental disorder,
but you can a "disease" state!) As another parent recently noted, a
child with "Autism" is not suppose to be able to recover, develop
"functions" they are not suppose to have, rather one tries to
compensate and work with the dysfunctions. A child with a disease can be treated
and expected to recover, especially if caught early enough, before the
"disease" state can create permanent damage or injury.
In the past I had been told don't give false hope to parents. Perhaps, as has
been expressed, it remains that fear (played upon by many old organizations),
skepticism, that will keep this effort from achieving the support it needs. IF
that happens, that will truly be a major crime, recognized 5 -10 years from
now). Again, focusing on SCIENCE, (not false promises, convoluted explanations
or ideas), science now says this does make sense. There is reason for all of
you to have hope, NOW, as we enter the new millennium.
So, with increased hope for the year 2000 - this can be made to happen
Michael Goldberg, MD
Addendum: Parents have asked what to do if "friends" or others wish
to support the NIDS effort. The NIDS Research Institute is fully
"nonprofit" / tax exempt. Donations can be made out to "KIDS
Medical Board & Research Institute" and sent in care of my office or
sent to KIDS c/o MAT @a P.O.Box 5938, Glen Allen,; Virginia, 230582. Helping in
any way to spread the awareness of this effort, the science of the NIDS
hypothesis, the boards efforts, etc. will all help-in overcoming the last
barriers, the last obstacles to making this finally happen.
(Note: As has been discussed recently, this effort is meant to represent an
enlarging collaboration of researchers around the world and is open to support
and participation by any and all existing groups. The intent is to welcome any
and all who want to help "focus" on this effort and make it succeed.
There are meant to be no "old" politics or barriers in the way and it
is time we all made a new start for these children.)
Michael J. Goldberg, M.D., F.A.A.P.
5620 Wilbur Avenue, Suite 318
Tarzana, CA 91356
Telephone (818) 343-1010
Fax (818) 343-6585
e-mail: office@neuroimmunedr.com
On the Web: www.neuroimmunedr.com
ADHD / ADD – Learning Disabilities
Immune Dysfunction
CFS / CFIDS
Autism / PDD
Winter, 2000
Autistic Spectrum Disorder I
http://www.neuroimmunedr.com/Articles/Autism___PDD/Immune_Connection/Autism_2000/autism_2000.html
******************************
Blair hails school for special needs children
Tony Blair has hailed a new £4.5 million school for children with severe learning
difficulties as one of the best in the world.Mr Blair and his wife Cherie
formally opened the Portland School, in Sunderland, which also caters for
autistic youngsters.But they refused to answer reporters' questions on whether
their son Leo had been given the MMR jab.The couple were then treated to a
version of Michael Jackson's Heal The World which 14 children performed in sign
language.Headteacher Jennifer Chart told the Blairs the children had been
practising the song ever since the terrorist attacks on America in September.Mr
Blair told the children, staff and parents he felt overawed by his visit.He
said: "I think this school is as good as anything I have ever seen, what a
fantastic building it is. It must be as good as anything that exists anywhere
in Europe, if not the world."We should judge the strength of a society on
how we value each and every member of it and this is as spectacular a
development as I have seen."The dedication of the people working here
should give pride to the whole of our country."Portland School opened in
September and provides state-of-the-art facilities for youngsters with profound
learning difficulties, including paramedic rooms, light sensory areas, and
sound and hydrotherapy facilities
http://www.ananova.com/news/story/sm_478242.html?menu=news.politics
******************************
Blair silent over MMR jab for Leo
Rebecca
Allison
Thursday December 20, 2001
The Guardian
Tony Blair yesterday remained steadfast in the face of mounting pressure to
reveal whether he had allowed his 18-month-old son Leo to be given the
contentious measles, mumps and rubella vaccine. Medical debate has raged over
the safety of MMR following claims that it is linked to autism and bowel disease.
Challenged directly for the first time on whether Leo had been given the MMR
vaccine, the prime minister insisted the health of his children was private.The
issue was raised during question time by Julie Kirkbride, Tory MP for
Bromsgrove, the mother of a 14-month-old boy, who told Mr Blair the public had
a right to know if he had permitted his own child to have a triple MMR jab.The
Blairs have remained silent on the issue. Ms Kirkbride told MPs the government
had campaigned to inoculate all small children and "prevent parents who
want to give their children the single vaccinations from doing
so"."In these circumstances do you not see your legitimate desire to
protect the privacy of your child is very much at odds with legitimate public
interest on this matter who want to know whether you practice what you preach.
Will you take this opportunity to let us know whether little Leo has had his
jabs and in doing so reassure parents," she said.Mr Blair replied:
"I'm not going to enter into any public discussion on the health of my
children." He said the government's recommendation that children have the
combined vaccine was supported by the World Health Organisation.
http://www.guardian.co.uk/guardianpolitics/story/0,3605,622078,00.html
******************************
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