Nids

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