Re: [NIDS] Pros and Cons of seeing Goldberg
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
Erika -
Thanks for your honesty. I have been on the "Protocol" for 3 years and see
much of the same contradictions you do. In the end, you need to use your own
instinct, common sense and love for your child to guide your search for
recovery.
Bonnie
Erika,
The reason we see Dr. Goldberg is because the "Science" is behind him. All
one has to do is look at the research at credible institutions. Look at
what our government is saying about autism. They mention that immune
abnormalities have been found. They mention that genetic hotspots exist for
autism. It seems like just about every credible researcher is now saying
that something is wrong with their immune systems. Even Wakefield said that
he wasn't saying that shots caused autism, but that they have immune systems
that respond differently.
Many of the parents are also ill with disorders like CFS, FM, or some type
of autoimmune problems. Because of that we have had the opportunity to
watch varients of all these different theories come and go. All the
credible research is along the same lines as autism.
There are alot of people working very hard to put the protocol together.
The parents groups are working on ways to get other physicians trained.
What you have to realize is that the protocol is not the goal of all of
this. It is what we are able to do for our kids now. Until we have the
studies completed and the immune modulators available. Until then this
takes alot of clinical judgement based on labwork and the childs response.
It isn't perfect but it's the best we have available at this time.
When I read Dr. Megsons work she clearly stated that the children still have
severe immune problems. How is that being addressed?
Re: Chelation
I fully understand why he is against chelation. In the first place there is
absolutely "NO" science behind the theory that these kids have metal
poisoning. That is why they are saying it's a "NEW" type. There is science
that shows some people may be genetically susceptable to an IMMUNE reaction
to metals. There "IS" science that shows children with elevated lead (real
metal poisoning, I think the levels were up to 60) had no benefit or
actually ended up a little less intelligent, a little worse behaviorly. I
just posted an abstract on MT which shows that MT-3 which is only expressed
in the brain, actually causes cell death. I also posted one before that
found if there really was metal in the brain, chelation could redeposit it
into the frontal lobe. This type of damage is something that Dr. G. would
not be able to overcome. Functional damage (what our kids have) is
completely different.
I read the paper on MT. I honestly couldn't find anything in the paper that
validated it scientifically. The imbalance they found certainly doesn't
prove a problem with the MT gene, much less metal poisoning. If they used
hair analysis we know that is something that has been considered inaccurate.
I remember Dr. G also had a very long post on why these kids do not have
mercury poisoning.
Everyone wants to find one thing as the "cause", one thing they can focus
on. What we need to realize is that we are all genetically different.
Those differences are what make us susceptable to certain types of
illnesses, pathogens, toxins, etc. The problem is the way our bodies
respond to certain "triggers". There may be a different trigger due to
genetics but the end result is the same, NIDS.
This really isn't about seeing, or not seeing Dr. Goldberg. What this is
about is doing mainstream, "credible science" to validate this as the
medical condition it is. With credible markers and direct treatments, all
doctors will be able to test and treat. No child will be subjected to
potentially dangerous treatments. Exactly what is happening out there now
because parents don't know what to do, or who to believe.
I would be more than willing to explain the NIDS theory to anyone who
doesn't understand. I have done an endless amount of research and have not
found anything that would discount NIDS. On the other hand, I can't find
credible research that validates other theories that I have looked at. I
know it's hard for parents because I have read quite a few things that are
made to sound really credible. Yet, when you do a little research you
realize they are trying to pull alot of things together that really don't
fit. Or they start digging out research that is really old because nothing
current backs them up.
When it comes to Dr. G. I realize that we are not always going to see eye to
eye, on everything. (we don't, LOL) We eventually work through things and
get on with doing the best we can for my son. I think he deserves alot of
credit for pushing the science. Who else out there is pushing the kind of
science that will end the confusion once and for all? Not only that, but
also medications that will treat these disorders directly.
If understanding and backing NIDS makes me a "Dr. Goldberg groupie", oh
well. To be honest....I believe that anyone who takes the time to
research....understand how the brain and body works, will back NIDS
Research.
Cheryl
Yeah Tracy: Thank you so very much. I am not only the parent of a NIDS
Child but a school nurse working with a school full of NIDS kids infants
through preschool. This is an epidemic that seeks to destroy out childs
potential to put it mildly. Not only does it affect one child in the family
but often more than one and frequently one or both parents. Unfortunately
from what I have experienced many times the mother is affected by Chronic
Fatigue Immune Dysfunction/Fibromyalgia which is adult NIDS.
What is needed here is to roll up our sleeves and help in this epidemic that
affects so many people and the numbers keep growing. The school districts
are experiencing a tremendous increase in need for services for children who
are part of the epidemic and the school personnel/parents do not have a clue
as to what is going on or what needs to be done.
Linda Smith RN/MSN/CPNP
In a message dated 12/3/2001 11:02:42 PM Central Standard Time,
clbro66@... writes:
Hi Cheryl,
Obviously, if you have done a ton of research on this, you are NOT what I
would refer to as a "groupie." What I was referring to as a groupie--and I
believe Erika meant as well-- is someone who will blindly follow someone
without knowing what is going on with their child's treatment. When I first
started on this list, someone--and I am not pointing fingers at anyone in
particular--told me I should not try to understand the science behind NIDS,
but just let Dr. Goldberg worry about it. Well, if I was willing to do that
with any doctor, I would not be here now. I would have accepted what my
first doctor told me --just take him home and love him--and that would be
that. The very fact that we are on this list shows that we all believe we
need to be a part of our childrens' recoveries.
Please share whatever you know about NIDS. There is still a lot I need to
know, and I have been looking into this for a while. I know all of the new
members desperately need the info.
Tracy
Cheryl,
The science may very well work, but it seems to me
(and I don't think I am alone) that there seems to be
some hording of information. No protocol is readily
available through the site, and I have even requested
it by email directly. Those of us who absolutely
cannot see Dr. G personally should still be able to
put good science to use for our children who are
suffering. Is the science proprietary?
Just as a reader on the list, another thing disturbs
me- there seems to be an awful lot of trial and error
and hit or miss with the medications/treatments
administered to these children. That should be
relegated to clinical trials, no? It is nearly a
daily occurrance that some parent of a child being
treated by Dr. G posts that their child has regressed
or gotten worse; and desperately seeking the comfort
and assurance of fellow Dr. G patients that all will
be well.
While I understand that each child is an individual
who will react differently, it is much too common an
event for cautious parents to leap blindly.
I fervently hope that children are improving or
recovering with Dr. G. It would be nice to see some
empirical data and more positive posts.
Thank you,
Aliza
Tracy,
Great attitude! Anyone can sit on the sidelines and criticize but rolling
up your sleeves and pitching in takes a special person! Welcome aboard! Kathy
NIDS-NNY
Hello All,
As an Rn and parent that has been researching for almost 9 yrs, I am so
happy to have found Dr. G. Many yrs ago, I was given an article that he
had written, " Autism and the immune Connection" that I knew was what my
son's demise was at 2. I only wish that I had gone directly to him when my
son was 4. I thought that I could get Drs to do the blood tests and give
him the meds that were involved. After banging many doors down, and with
the help of an immunologist, we began to work of his obvious immune
problems. But...... Candida?...... not a problem unless there is obvious
thrush.
. Neurologist diagnosed the partial complex seizures, the GI, NEVER got it.
SOOOO my point is, that Dr. G can interpet labs , understands the big
picture . WANTS to have an update every 7 - 10 days. On top of that he
wants a phoone consult every 4-6 wks. He is opinionated, thank GOD,
because he knows what he he is doing and he CARES!
In just 6months of seeing Dr. G , my son is doing very well. For those of
you considering seeing him, I highly suggest you do whatever it takes to get
your child on a plane and go see him.
Thanks to all of you that reply to this list,
Ellen
Thanks, Ellen! You made a lot of sense. Stories like yours make it harder
and harder for me NOT to take my son to see Dr. G. You have definately given
me something to think about.
Tracy