Nids

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

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

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

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

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

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

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

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

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

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