Linda's Blog

Hi Jerri,
I don't think so. Alot of these things have already been tried with CFS
years ago.
The abstract say ------may be partially ameliorated by**synthetic oxytocin
infusion**
From what I understand, synthetic oxytocin is Pitocin.
Cheryl

Did you guys see this in the Schafer Autism Newsletter it mention Dr. G. Yeah!
LETTERS
On "Looking For Controversy? Missing Links" Commentary
I read Mr. Lowe's commentary with interest. While I agree in part
with his comments I believe a lot of important clues to this "mystery" of
autism, vaccines, mercury and thimerisol have been overlooked. The
prevailing questions everyone seems to want answered are, "Does the mercury
exposure obtained from thimerisol contribute to the development of autism?"
and "Does the MMR vaccine contribute to the development of autism?" We
have the government, drug manufacturers and most medical professionals on
one side saying there is no connection; on the other side, angry, desparate
parents and a few very concerned researchers saying there definitely is a
connection. In the middle are a bunch of money grubbing attorneys anxious
for a jackpot. In the balance hang the lives of hundreds of thousands of
autistic children and adults with few resources and dim hope for a normal
future.
There must be something else to tip the scales in one direction or
another. Perhaps something more insidious is at work.
If anyone has reviewed the site for the Center for Complex Infectious
Disease (CCID) www.ccid.org they would find that Dr. John Martin has
research indicating that many of the vaccines we were given as children, and
probably the ones that are still in use, are contaminated with stealth
viruses and retro viruses, such as SV40, CMV, HHV6, and others. Similar in
their action to the HIV virus these lay latent in the body or act in
insidious ways that would not be immediately recognized, detected and
treated by most medical professionals.
Should you read work by Dr. Paul Ewald, an evolutionary biologist, who
believes that many of the incurable diseases and conditions such as cancers,
lupus, autism, etc. are caused by bacteria and/or viruses. It begins to
come together somewhat. Much like stomach ulcers were once treated with
only surgery, antacids and dietary modifications and are now many times
known to be caused by a bacterial infection, these other conditions may well
in the long run be found to be disease entities easily treated with
medication.
Even if the above were well known to be true, this does not entirely
erode the argument that mercury in thimerisol and environmental exposures
may contribute to the development of autism. Nor does it make the drug
manufacturers, CDC and FDA entirely free of guilt for the continued use of
these substances. In fact, if Dr. Martin is to be believed, the FDA was
informed repeatedly many years ago of the contamination of the vaccines by
these viral agents and those responsible for reporting it were eventually
removed from their positions. Never was anything done about it. It is
feasible to believe that the drug manufacturers and CDC also knew but
refused to do anything about it. Perhaps this is something they fear more
than the thimerisol debacle.
Now, even knowing and assuming all of the above were true there is
another wrench in the works that needs to be addressed. There is strong
evidence, according to research done by the Carl Pfeiffer Center in Chicago
http://www.hriptc.org/introducing_HRIxPTC.htm, that a great number of
autistic children are lacking in an enzyme called Metallothionein that
enables their bodies to metabolize and cast off heavy metals. If this is
true, this would account for the difference between children that are able
to tolerate the thimerisol in vaccines and those that are not. It would
also provide a starting point for identifying those children that perhaps
should not be vaccinated or avoid any exposure to heavy metals in the
environment. Should this be the case, the vaccine manufacturers could not
be held entirely responsible for these cases of autism, which begin with an
inborn error of metabolism.
The question remains what can be done about it. Apparently one
pediatrician is taking a proactive stance on treating autism as a disease
entity, rather than a developmental disability. Dr. Michael Goldberg
http://www.neuroimmunedr.com/present3/ or
http://mat.org/slides/sld001.htm believes, from evidence gathered in his
practice that autism may well be caused by viral infections that cause the
temporal lobes to shut down and cease functioning. This could easily be the
case according to the information set forth above. He is treating each
child with a combination of anti-viral medications to fight the viral
infection, anti-fungal medications for overgrowth of candida albicans in the
gut, SSRI's in low doses to stimulate reactivation of the temporal lobe
function and has had some degree of success in improving their condition.
Many questions remain to be answered and a consortium of researchers
persuing a more productive path needs to be established. The attorneys
should be thrown out of the equation. The drug manufacturers and government
agencies should be forthcoming with useful information and stop covering
their own backsides at the expense of sick children. Money should not be
thrown into proving or disproving the thimerisol link, but into establishing
how these children got sick in the first place and what can be done to
alleviate their illness.
Could our children have been infected in utero by a stealth virus or
retro virus passed on from their parents to the child? Could the parents
have been infected when they were vaccinated? Could the children have been
re-infected upon vaccination? Could it be that the combination of a
Metallothionein deficiency and exposure to environmental heavy metals caused
a deterioration of the immune system, allowing the latent virus to become
active and shut down the temporal lobes? There are many pressing questions
to be answered, but few if any seem to be being addressed by researchers
currently.
Tashia Berman Mother

I am way behind on reading the NIDS list, so if someone already responded to the
below post, forgive me. Dr. G told me eyes dilating is a sign that the central
nervous system is not in control and it is a good thing to make note of for him.
Mainly, I think he wants to know when it stops in other words when they do not
do this anymore. My sons eyes are constantly dilating too and I can not make
rhyme or reason of it,food wise. Jerri
Date: Thu, 23 Jan 2003 14:08:54 -0800
From: "Alicia J. Marron" <ajmarron@...
Subject: RE: Re: dilated pupils
My daughter's pupils dilate up and down throughout the day. I have
watched them for a long time and have found no triggers. I have seen
them go up and down and back again within a matter of one hour. Dr.
Goldberg has never really responded to this. I am wondering if it is an
inability to process sensory inputs throughout the day that trigger the
"flight or fright" response that only shows up in her eyes. Any other
ideas?
Lici

GEEEEEZ!
Garrett's pretty sensitive to that stuff too, so thank
you for the info.

I'm sorry I don't have enough advice to help on the
diet questions - just a couple of comments below:
***** Hey - would you like me to mail you a little
of the Dari-Free - enough to try it a couple of times
to see if he'll drink it? It's also okay to use in
cooking. I have a couple of small cartons left and
I'm not really using it right now. I can send you a
couple of cups of it if you want. Email me directly
if you'd like. (You have me wondering about the Rice
Dreams for my son too ... thought I might have been
seeing something there and thought "Nah...".)
***** I am so sorry. My heart hurts for you. I have
been worrying myself sick about my 20mo old,
constantly in fear of that happening to us as well,
especially seeing the signs and knowing what they
mean. I can only imagine how you are feeling - as I
have feared the same for some time now. I know you
are really suffering right now. I wish there was
something to say to help you feel better, but I know
you have to suffer through the grief (and terror)
before it gets better. I just wish that very soon you
will get to have cause to celebrate each and every
progress you see in your children, and that it
strengthens your hopes for their futures.
Good luck Jerri and hang in there. (Deep breaths!)
Cynthia

My daughter was on singulair for a short time (6 weeks or so) and we
didn't see a response. Dr. Jyonuchi put her on it for sinusitis but
also mentioned it sometimes helps with difficult proteins. I imagine
this is related to allergies. Never quite clear as to what she was
really trying to treat but we tried it. No noticable differences for
our daughter so we stopped it. Terri

MSG is present in many additives and may not be labeled as such. Here is a list
of hidden sources of MSG. It is so hard to keep our children's diets pure!
http://www.nomsg.com/sources.html
Susan

It usually depends on the child's age. My son started the protocol at 4.6
(years old) and hasn't had to have one. The scan (called NeuroSPECT) can be
very useful in determining the best course of treatment. Are you sure your
insurance won't cover any of it? If your doctor (or Dr. G) orders it and codes
it correctly?
Also - I'm not sure if this is correct, but I think sometimes children can be
sedated for this procedure (feel free to chime in, listmates).
Donna

Clear DayAwhile back an educational psychologist recommended I have a brain scan
to monitor the blood flow in my son's brain. I thought it was a great idea so I
called to get info and set up an appointment, even though it was going to cost
$3,000 out of pocket.
I was told my son would have to lie still for at least 17 minutes and if he
moved the test results would not be accurate. I asked if they would sedate him
and they said by law they could not.
I refused the test because why would I pay $3,000 for inaccurate test results
due to my son's inability to lie still for 17 minutes (He can barely sit still
for 2 minutes).
So my question is, does Dr. G require a brain scan before he will begin therapy?
MT

I am at my wits end here. My sons eosinophils are getting continually
higher. We were just doing Goldbergs diet list and they got higher so I
went GFCF because my sons allergy panel has wheat, glutin, gliadon
(whatever that is), in the significant range (these were the only
things). So it made sense to me. Dr. Goldberg did not ask us to do this.
His blood panel came in even higher. Dr. G now says we must eliminate
all tropical fruits (easy to do, it was in some juices we were using),
fruit juice concentrate, (not easy to do) and all brown rice (very
difficult to do and stay GFCF). He can not tolerate soy either. We are
back on white and wheat flour (not whole wheat) but when I read all the
posts about the great results from GFCF it just seems my son is a
candidate for great improvement. Dr. G said the goal is to reduce all
allergens to bring the eosonophils down., removing the whole from whole
wheat should do this, but my question is if you are allergic to wheat
and glutin shouldn't you remove it all together? My sons eosoniphils
were actually the best when his diet was not very good which makes me
think maybe the eosonophils (I hope I am spellling this right ) levels
are showing he is getting better. For example, I never could tell any
foods making any difference whatsoever, now I can tell red food dyes and
red fruits do make him very hyper. So the better he gets maybe the more
I will be able to tell which foods affect him? Does this make any sense.
I really don't know what to do. I found Basmati rice milk because rice
dreams is brown rice. Goldberg has eliminated almond. I haven't been
able to order Vances Dari-Free and who knows if my son would drink it.
Well, I guess you guys can hear my insanity without me going on and on.
Thank you for any input. My younger son was just diagnosed by the Mind
Institute as autistic too. Mildly though they say. So I am devastated
all around. To me it's like saying you mildly have cancer. Sometimes I
think the more high functioning kids have a harder time because you look
so normal no one can believe it and so we are just bad parents. Sorry
for all the ranting, I guess I just have to vent. Jerri

Is anyone else out there using singulair to deal with allergies that aren't
addressed by the typical meds...zyrtec, claritin, flonase, allegra, etc? I'm
simply amazed by our son's response to it....perhaps the most effective med
he's ever used! His auditory sensitivity is gone, lifelong dermatitis is
gone, and language has skyrocketed (at the age of 8...). I just wondered if
anyone working directly with Dr. G knows his thoughts on Singulair. BTW,
this kid is one of the "hyperimmune" ones...hasn't been sick since a severe
viral infection as an infant, and has had limited improvement on
antivirals/antifungals.
We didn't see the same results with our hypoimmune child, who took off after
adding Famvir, but that could be because he's so high functioning now it's
hard to gauge improvements.
Thanks!
Liane
Liane Gentry Skye
author
<A
HREF="http://www.amazon.com/exec/obidos/tg/detail/-/1589610245/qid=1035899372/sr\
=1-95/ref=sr_1_95/103-0462897-9459854?v=glance"
Snapshots from a Voyage Out of Autism's Silence</A
<A HREF="http://talkingwithpictures.com/"
"nonverbal" does not have to mean "unable to communicate"

Do you know of a source which teaches this? A book or
instructional procedures perhaps? Barb

=====
Barb Katsaros
barbkatsaros@...

You can also write off mileage to and from doctors appointments and therapy. If
your child is still in diapers or pull-ups you can write that off too.

http://www.schwablearning.org/articles.asp?r=684&g=2
According to this you should be able to write off the conference...
Susan

Maybe you could read Karen Seroussi's book "unraveling the mysteries of
autism"
It's quite an easy read and it's informative. There are recipes in the back
of the book, maybe she could rise to the challenge of coming up with some
GFCF cookies.

Hi Everyone,
Remarkably, after over six years of using a strict, special diet with my son,
we now have our first family member (a grandmother) who is giving us a hard
time about the diet and we're afraid she may try to sneak a few things in
that he reacts to. Her attitude is "it's not going to kill him." I want to
help her understand that while it may not kill him, it will harm his health.
Does anyone have a good, scientific, yet understandable way to explain this
using the immune system test results?
Gaylen

Thanks to all who responded to my post about my son's frequent urination. He
is no longer urinating so frequently and seems to be feeling fine. I have
decided to wait and contact a urologist sometime in the future.
Thanks,
Tracy

Anyone out there familiar with the tax laws? I know you can write
off special diets for medical needs but need more specifics. Also,
you can write off travel and conference expenses related to medical
issues. Any help would be appreciated. Thanks, Terri

Females have a capacity to use social contact with others
to reduce the effect of stress.
perhaps that is why they live longer?
http://3service.freeservers.com/friends.html
That may be why there are more Autistic males.
http://3service.freeservers.com/stress.html
Neil :-)

Hi Kate,
I'm not sure why it won't open for you. The only thing I can think of is a
problem with your acrobat reader. The website is below if you want to try
downloading the newest free reader.
I tried to locate another version of the article but couldn't find anything.
If you find that you still can't open it, send me an email. I know
someone much more computer literate than me, who might be able to convert it
to text. Otherwise there's always snail-mail. :)
Cheryl
http://www.adobe.com/products/acrobat/readstep.html
http://www.soton.ac.uk/~da3/pages/342_3/Dantzer.pdf

Cheryl,
I couldnt' access that file---kept getting "web site unavailable"---is there
another way to get that article (html?)
Kate

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Excellent post Brian. We would love a copy of your letter.
Susan
dmccreary@...

Hey Sharon, Thanks for your comments...I guess all
parents are different too :) My response to the fact
that all my son wanted to do was play playdough was
"let him." I didn't care. I didn't care that he was
'stuck' on something. It got him in a positive
environment with other children every day and he was
soaking up all the classroom had to offer him.
Eventually he got sick of the playdough and did move
on to other materials. He simply HAD to satisfy
himself. I think there are so many tough calls all
parents have to make and couple that with an autistic
child and their pecadillos and it's nearly impossible
to know what the 'right' choice is. I think it's safe
to say that we're all just doing the best we know how
given the data points we have to work with. J.

Hey, can anyone tell me how I can transfer to the digest option? Thanks so
much!!
Margaret

Many of you wonder, like we recently did, how to find a pediatrician
who will be pro-Goldberg -- or, perhaps more accurately, not anti-
Goldberg. Our son is 25 months old. We're not the type of parents
who would normally jump from doctor to doctor. But he's now on his
3rd pediatrician. I think we may have finally found the right
match. Here's what we did. We hope others have the same good
fortune:
We canned his 1st pediatrician after our son's diagnosis. It was
clear in retrospect that there were a number of developmental
problems that she never noticed, but should have. As first-time
parents, we share some of the blame since we missed some things as
well. But a great doctor should recognize developmental problems
regardless of parental ignorance.
His second pediatrician had a very good reputation. He runs a small,
friendly office that is not the typical HMO mill. He is an older
gentleman who spends lots of time with the parents and does not seem
rushed. We loved him until we started talking about our plans to
visit Dr. Goldberg. He knew nothing about Dr. Goldberg's protocol,
but started telling us how he's been around long enough to know that
there are always doctors ready to lead parents into trying "the cure
of the week." He handed the NIDS literature back to us without
reading it. He disagreed with me when I suggested that most medical
cures/discoveries probably seem a bit odd when 1st discovered (e.g.,
it took forever for the medical profession to accept that ulcers were
caused by a bacterial infection, not stress). He disagreed, even
when I reminded him that during the 1st half of his career, he and
the rest of the medical profession would have blamed my "refrigerator
mother" wife for causing my son to "become autistic" by withdrawing
into himself to escape her rejection of him. ("Oh yes, we did seem
to think the mothers had something to do with it. It seemed they
were all professional, working moms, which was unusual at the time,"
he recalled.)
This second doctor was certainly willing to "humor" us and go along
with our plan. He even ordered Goldberg's blood tests for us so our
HMO would cover the cost. But we couldn't imagine having to fear a
patronizing reaction (or worse) during each subsequent visit. We
canned him too.
Our options for a third pediatrician were much broader since we
switched from our HMO to a PPO on 1/1/03. We learned of a doctor who
has a great reputation for being extremely responsive to parental
concerns. I decided to write her a letter telling her about what
we'd learned of her reputation. I told her that under normal
circumstances we would simply make an appointment. I then told her
why we were being more cautious. I told her about our son's
diagnosis, and why we believe it is an inaccurate label. I
summarized Goldberg's protocol and hypothesis in a few paragraphs.
Significantly, hoping to gain credibility, I told her that Goldberg
was opposed to chelation, secretin, etc. (I forgot to tell her that
he was not an opponent of vaccinating children.) I told her we did
not expect our son's pediatrician to play a significant role in the
NIDS protocol, but we definitely wanted a pediatrician who was not
opposed to, and would be supportive of, our efforts despite their
present lack of general acceptance in the medical community. I
attached documentation including: the bios of NIDS-RI doctors, the
NIDS hypothesis, the Myth of Autism, and Goldberg's congressional
testimony.
Her office got back to us right away. The office manager said the
doctor was supportive so long as Goldberg was not anti-vaccination.
I told her about his views on the subject (go slow, don't vaccinate
shortly after illness, etc.). I was told that this wouldn't be a
problem at all for this doctor.
During our 1st visit, the only negative was her opening question
regarding the age of my son "when he was diagnosed with autism." My
wife (never a poker player) visibly cringed, since this word has
become so taboo in our household. In fairness, though, the doctor
had no reason to know about our problem with the label. She promised
not to use "the A-word" in the future.
She was very supportive of our efforts and told us she'd be doing the
same thing if her child had the same problem. She agreed that we
were doing nothing unsafe. She also thought many of Goldberg's ideas
(e.g., don't vaccinate after an illness) are simply good pediatric
practice.
Interestingly, she said that she didn't know Goldberg, but she
practiced in the same community (the San Fernando Valley) when she
was a new doctor 15 years ago. She said that Goldberg (who had a
general pediatric practice) was "ahead of his time" back then.
Most significantly, she said that the person who "solves" this
epidemic will be a person who "thinks outside the box." This comment
was so refreshingly accurate. Interestingly, though, although
Goldberg "thinks outside the box" insofar as he challenges
conventional medical wisdom, all of his ideas are entirely "in the
box" to the extent they are based on longstanding medical wisdom and
basic logic.
If anyone is interested in a copy of the letter to modify for your
own use, feel free to write.
Brian (Gurwitz@...)
Orange County, CA

It really depends on the individuals you're dealing with and the
funds they have to work with. Unfortunately, it is becoming much
harder to obtain needed services.
Even though I understood the laws and how they're supposed to work,
it doesn't matter if they're not followed. Websites like
Wrightslaw, http://www.wrightslaw.com discuss alot of the problems
parents are having. Parents across the country are experiencing
what we did. They need attorneys involved because even the basic
parent rights are being ignored.
Schools are trying very hard to avoid being responsible for needed
services. In our case they decided that NONE were needed and they
didn't feel he qualified anymore. They were even discounting his
diagnosis. Pretty sad since their own records documented over
several years, behaviors that are consistent with the disorder.
The schools require evaluations by their people, unfortunately some
are not of very high calibre. (I'm not sure whether it's pure
incompetence or purely intentional, in our case... probably a little
of both) They were given a copy of the speech/language evaluation
we had from Dr. Fosnot, yet they couldn't find any problems and
decided that no help was needed in that area. (SOS eval found
problems)
One example of the school psychs "quality" work, are the test
results on my sons visual/motor skills. Instead of the accurate
evaluation later done by the SOS team (visually gifted 99+%, motor
skills lower 2%) The schools psych chose to blame my son for not
trying, etc. etc. and came up with no problem and average skills,
50%. I guess you could come up with average with 2% and 99%.
I would love to hear that people are able to get everything they
need. They also need to be prepared for what has become reality for
many of us.
Cheryl

Thanks Jon,
I hope that everyone takes the time to read this. The article covers alot
of the same issues that Dr. G. discusses. I think it might help to clarify
some things about NIDS that might be confusing.
How the immune system influences behavior and mental states and the same
potential link to autoimmune and inflammatory diseases.
It discusses how peripheral cytokines induce synthesis and release of
cytokines in the brain, alter brain function, with effects like:
glutamate release
reduced zinc and iron (so they're not available to microorganisms)
adverse metabolic effects like increased lipolysis, hypertriglyceridemia
food intake and preference
HPA effects
impaired short term memory
impaired learning
behavior
concentration
interest in surrounding
motivation
social withdrawal
and alot more........
Thanks again :)
Cheryl

Katie,
Don't pay for anyone yet. The IEP team will usually will follow your wishes
on this kind of stuff. If they don't, then hire someone and call another
meeting. I just wrote a new article on
"Advocating for your Child or How to Navigate the IEP" I think Doris is
going to put it in the next newsletter, but for those of you who need it now
and can't wait, email me.
Marcia

Hello Everyone,
We are heading to see Dr.Fosnot this week...for any of you who have seen
her....any comments on the visit and the programs she recommends....also any
comments on the visit or what to expect...................thanks in
advance...............................................................Candi

Our children have a dysregulated immune system. Paxil as well as some of the
other SSRI's are immune modulators. Currently the only way to see with SSRI is
right for your child is trial and error.
I remember sitting in Dr. G's office many years ago and arguing with him. I
told him that I don't drug my child to make him behave. That was when Dr. G
asked me if my child had diabetes would I give him insulin? Our kids are sick
and until the big cure comes along, they need these meds to make them healthy.
The medications are not bad for our children, when the right dose and kind is
discovered they help our kids. After starting Prozac in a very small dose, my
son's social skills soared. Remember you are in control of your child's medical
treatment. If something is not working, you can always stop it.
My son now is in all the accelerated classes without assistance and gets
straight "A's" He would not have made it without these medicines. I know this
for a fact because when we moved into a new house some years ago I forgot to
refill his antivirals. I didn't think they did much anyway. Within a few days,
I saw a very autistic child I hadn't seen in years. After starting the meds
again, he returned to his normal state. Our kids are sick and they need strong
medicine to make them well. I have lots of info to share if you need help email
me.
Marcia

Use your regular recipe, but substitute milk with something like Mocha Mix non
dairy creamer, Rich's nondairy creamer or whatever you have in your neck of the
woods. I would like to just have a good biscuit recipe. If there is butter in
it use Canoleo non-dairy margarine. It tastes great. We all use it. If you
want more info on how we do the diet or stuff I send out to new parents who are
just starting email me and I will send.
Marcia Hinds

My son's school abandoned phonics with him because they said he "couldn't get
it" . After starting our home ABA program (relatively late---age 9) we began
teaching phonics successfully. When we got to difficult combinations of
sounds (multiple vowels and consonants) we kind of ran into a wall. We
mainstreamed him at a local Christian school where the the LD teacher taught
the NILD program ---they successfully taught him all complex decodings using
the "Blue Book" method. Basically the child memorizes a different "key word"
for each complex sound combination ie ea--treasure, ough---though , When
reading , they encounter a word, and say the key word to themself, and this
clues them on how to pronounce the word. My son did very well with this
program, and did so relatively painlessly--
Kate

The function of anti-rejection drugs is to weaken the immune system; for that
reason, I doubt Dr. Goldberg would prescribe it for NIDS kids.
Donna

We are in Southern Ontario also. I know my own doctor is not accepting
new patients. I just lucked out - when I was looking for a new doctor
(no way my old doctor would go for it), he was the first doctor I found
in the area (Halton) who was accepting new patients and he read the info
for me and agreed to be "cautiously supportive." So far he's written up
all the prescriptions and bloodwork we've needed. He even did the
paperwork to get a home care nurse come to our home to teach me how to
give the Kutapressin shot. I think it helps that he is very young (fresh
out of med school) and very open minded. Good luck with your search.
Email me privately if I can help in any other way.
Paulette

It could be a side effect to any medication he might be on, even if the doctors
claim otherwise.

Many of the NIDS children are on low dose Paxil or low doses of other
SSRIs. This is due to their effect in increasing blood flow in the
brain.
It's an area of NIDS treatment that is actually fairly widely
accepted as many docs seem by now to have come across the various
studies done on SSRIs and "autism", I think the most important one
was from Duke but it has been replicated. I know that our various
docs react strongly to the use of Anti-fungals and anti-virals but
are fine with the SSRIs.
Muki

Hi all, Sorry for the off-topic post, but this is an emergency. My
son--eight years old, practically non-verbal--has been urinating every 5 to
10 minutes in the last 24 hours. We have a doctors appointment at 3:45 this
afternoon. However, unless there is blood or infection present, the doctor
will do nothing. I know because this has happened before. Does anyone know
of anything else that could be causing this? What else should we be looking
for?
Thanks,
Tracy

Timary,
I found this on the web for you... I can't vouch for it as I haven't tried
it, but you could give it a whirl!
Caroline
Buttermilk Substitute
Use: 1 tbsp. vinegar in a 1 c. measure, add soy milk to the 1 c. level.
or use lemon juice with rice milk
Allow the mixture to rest at room temperature for 10 - 15 minutes before
using.

Absolutely!
Many (maybe most!) kids with Asperger Syndrome fit into the NIDS spectrum.
KEEP READING... don't despair! There is SO MUCH that can be done to help
your child medically, and this is where to learn more about it. Welcome to
the group!
Caroline

My son has been recently diagnosed with Asberger Syndrome. I was
wondering if asberger fits into the nids spectrum?

antonia,
Do you know where I can find the book you mention? Not on Amazon and BN sites.
Susan
what Skinner wrote and managed to write up "teaching language to
children with autism and other developmental disabilities".

Hi all,
My sister takes a very mild anti-rejection drug called purinetrol
for her ulcerative colitis. I was wondering if Dr. G. has ever mentioned
using something like this with our kids.
Thanks,
Tracy

This needs acrobat reader and is well worth a look.
http://www.soton.ac.uk/~da3/pages/342_3/Dantzer.pdf
Jon.

My NT sister, 40, is on it. Why is a 4-year-old on it? Is he in school? Is he
getting OT and SI? Speech? Full or half-day program? There are many, many
factors which change sleep. Were there snow days? Did an event happen which
changed things in his life? Is the OT there? Did the class teacher change?
Did the speech therapy stop or decrease for any reason? msherrett.

We've had good results on the Zoloft. We've been on other ssri's and
changed when he seemed to level off. It's been 6-9 months on this one and
it helped with focus and compliance. We are leveling off so we may need to
increase or try something else. -Noelle

Does anyone have a good dairy-free biscuit recipe? I live in Mississippi and it
is going to be tough to eliminate those buttermilk biscuits on weekends..
thanks!
timary

First I am not a doctor but it sounds like soooo many of the
experiences others have seen....some sort of illness causes a
regression....i.e. his immunse system has been assaulted and now
can't get back!
Look at....
http://www.neuroimmunedr.com
http://www.nids.net
The list of essential lab tests is on one or both of these web
sights, and the results of the blood work was the thing that
confirmed to us that our son was sick!!
Good luck!
Andrea

Katie
My son is also mid June's birthday, doing well academically. His is
in third grade now. His teacher told me last week his social skil is
about a year or two behind his third grade peers, which is OK, he
will cath up.
At back of my head, I do wonder at times if it were better if I hold
him back a year for social skills, But I thinks I will doubt about
the decision even if I did hold him back. It just a fact of life they
will have social skil delays.
So my suggestion is do what you fell is comfortable about. Hold him
back or not, you will have a handful help him with social skil.
Jin

Next time use Echinacea Goldenseal instead of an antibiotic. It sounds like
your son has made amazing progress. Keep up the good work.
Rose

My son was able to go with an aide (and in his instance, it was very TEACHER
constructed). It was a REMARKABLE experience for him.
Rose

Sooooooooo ... my question is: Have any of you had sleep troubles
after starting Paxil???
Hi Dave - yes, we had lots of problems with my son getting to sleep. The Paxil
made him very hyper. Dr. Goldberg told me that if the sleep problems persisted,
it was a sign that the Paxil isn't right for him and we should try something
else. It seemed to get better for a while, so we kept him on it, but then later
it made him so hyper and spacey we barely recognized him. We switched to Zoloft
three weeks ago, and so far, so good. If your son has been on Paxil since
December 13 and you're still having these kinds of problems, I would think it's
time to make a change.
Donna

Hi folks,
Through all of our son's ups and downs in his 3.9 years, the one
thing with which we have had hardly any trouble at all is sleep.
Until now!!!!!!!
From the time we sleep trained him at 8 months, he has been a 7 pm to
7 am sleeper -- guaranteed. So even during the hardest times (and
there were some bad ones) we and he always got enough rest.
Well, for about the last month he's been sleeping on average from
about 11 pm to 6 am. Sometimes staying up later than 11 pm and
getting up earlier than 6 am. It's rough.
Kevin started Paxil on December 13th. About 10 days later he had his
first sleep problems. A subsequent trip to visit family in Tennessee
sent his sleep schedule off the rails and it's still not back on.
It's one good night, followed by three bad ones.
Sooooooooo ... my question is: Have any of you had sleep troubles
after starting Paxil???
Dave

Here's some thoughts on the preschool issue:
Our son 3.9 years has been attending at pre-school for typical
children since he was 29 months old.
We believe he is benefitting from this, even though he is far behind
the other kids. The gap has been closing since he started the NIDS
protocol but he still has a long way to go.
The key, we believe, is finding a pre-school where the teachers are
up to the challenge. This, obviously from reading other posts, is not
easy.
We simply lucked out because the people who take our son each day (2
full days, 3 half days each week) are simply fabulous with him. They
understand his problems but don't sell him short. They challenge him
and always make him try to reach higher, without pushing him too far.
About a month after he started, the school phoned one day and wanted
to schedule a meeting. "Oh my God," my wife said. "They're going to
kick him out."
It turned out they just wanted to have a meeting to compare his
behaviour at home to his behaviour at school. They assured us they
were not dismayed by his challenges and they have kept that promise.
We we're later offered a place in an ABA-based pre-school for
autistic kids last spring but turned it down, prefering to pay out of
pocket for services during the week and leave him in the typical pre-
school.
Along with all the standard therapies: speech, OT etc ... our son
also sees a montesori tutor for two hours a week.
Our area also has a program called Children's Integrated Support
Services, which sends someone to monitor Kevin in the pre-school
environment every few weeks and provide us with a report. Kevin's
case worker, like the school staff, is wonderful.
When Kevin first joined the preschool, he was put in a class of 1.5 -
3 year olds.
At first, he screemed when he was dropped off ... for about the first
6 months, but we were assured by the teachers that this stopped each
day soon after we left.
Gradually he became more comfortable and many of the kids seemed take
a special liking to him, even when he didn't give back.
Last June, after he turned 3, the school wanted to promote him to the
3-5 year old class. We were nervous about this but happy that the
school believed in him enough to suggest it. He was still completely
non-verbal then.
At first he experienced some frustration. It was also hard for us as
parents to see the difference between Kevin and typical kids at that
age. He even had a period of biting other kids ... which thankfully
passed.
Kids come up to us when we pick him up and ask "why doesn't Kevin
talk? or "Why does he still have a diaper."
Mostly though, they seem to be very nice to them and he has
benefitted from having to follow along with the group.
Eventually, the school applied for funding for an extra teacher to
work with Kevin. She doesn't go one-on-one with him except during
times of structure such as circles and other such activities.
He now seems to be doing fine ... and we're often surprised when we
tell the school about Kevin doing something new at home and they
say: "oh, he's been doing that at school for about two weeks."
Kevin is now speaking about 15 words and the school is encouraging
him to use them. We gave them a list and asked them to try and elecit
them as much as possible.
We owe that school a lot. If you can find a good one for your child,
one that accepts him/her for where s/she his at and challenges him at
the same time, I think you are very lucky.
Dave

Hi, All Listmembers:
Welcome to all our new listmembers .......
If you are new to our list --- or would like a "refresher overview", please see
the Folder called "New to NIDS"; it's on our NIDS list site. To view it, click
please click here:

I'm not Noelle, but with us, my youngest son (not on
the spectrum) had some bad reactions to vaccines. Dr.
G wants to know why before recommending any more. He
wants him to have the MMR, but is also concerned about
whether he is ready for it or not. At this time he
has only suggested that we get the HIB since it is
pretty benign. We will approach vaccines at a later
time, but not right now. He is pro-vaccination, but
is also concerned enough to do them at more
appropriate times if a child is not well. He says in
our case it's a catch-22 and should be approached
carefully. I guess he'll monitor his labwork to see
what is going on with him before he sends me to
vaccinate.
I'm grateful he didn't tell me to hurry and get the
vaccines that are missing. If he had, I probably
would not have right now. This way I feel I'll be
able to trust him more when he says the time is right.
--- "sydbugg <cewlslgr@...

My experience when I checked out the Montessori schools for my son was that
it just wouldn't be a good placement for him. The school I saw (and the
philosophy of Montessori) is that it is child-led. If your child is able to
make appropriate choices, this is great. My son would have "chosen" to hang
out at the snack table all morning and ignore the kids.
I think for Montessori to work you have to have a really flexible child, who
is not rigid or gets "stuck" on certain activities. Unfortunately, when my
son was in preschool he was very prone to getting "stuck" and choosing the
same activities over and over again. With this being the nature of Autism, I
don't know if most of our kids would thrive in that environment.
But, as you said, it really depends on the child.
Sharon

Hi there,
My wife and I are eagerly awaiting to participate our son in the
NIDS protocol. We have already filled out the new patient info
package, but we will need to find a doctor in Southern Ontario
(Toronto area) to get the required bloodwork done.
Can anyone out there please help us in phone numbers of
doctors who are accepting new patients so we can get the ball
rolling for my son?
Thanks

My son went to a Montessori preschool, after that I send my daughter
for a good regular preschool that is not Montessori.
Although my son was quite high function, at the time he was not too
obviously having odd behaviors, I feel he was too freely to do what
he want to do instead of what he need to do. Our kids cannot lead by
themselves, and let them do what the want to do. They need to be
forced to do what them suppose to do in the level they capability.
Dr. Greenspan's way of letting kids lead is really a way of pushing
the limit, push them to do at best of their ability, push them to
think.
My son also had a hard time adjust to public kindergarten, because he
was not used to have to do things certain way as required in
kindergarten.
With my daughter, at the time, she had speech delay, social delay, I
choosed a good preschool with very good teachers, who really trying
very hard to work with her, and get her involved. With help of
therapists from school district who goes into her school, she is
doing exceptionally well this year even by NT standard, the first
year was a lot of learning for her. She did better in two and half a
day of preschool than my son in a full day Montessori. Granted that
teachers and schools makes difference, but I think regular good
caring preschool works better that Montessori for our children.
My suggestion is find a good preschool with caring teacher. If you
think there is too much issues to work on, send the child half day in
regular preschool, helfday in school district preschool to get full
support.
Private therapy is needed in most of cases. My son still go to
therapy three time a week, pluse swimming at weekend and two times a
week in after school care to play with his schoolmate.
I hope this will be helpful.
Jin

Dear Listmates,
Iam a physician from India and my son is 4 yrs old
and has a PDDNOS diagnosis which was made when he was 2 years and 10
months. We are new to the Group and need your guidance and hence the
long message . Sorry about that !!.
He has been on many Biomedical interventions to which he has shown
good response .These include :
GFCF SOY free diet, Enzymes , Supplements of B6 , CLO , Vit C , E ,
EFA , Zinc , Selenium, Molybdenum, Calcium , Taurine , Glycine,
Glutathione, Melatonin ,Probiotics, Kirkman's Yeast control ,
Nystatin , and Sacromyeces boullardi . He is also on Coenzyme Q10 ,
Silmarin , Gingkobiloba .We also have been giving Fluoxetine since
May 2002. He has been receiving DMSA for chelation of Mercury .
We manage 15 hours of therapy per week which includes Speech
therapy , Sensory integration therapy and Special education .
The following is an effort to capture his current capabilities :
Communication Skills: He expresses most of his needs in complete
sentences .He is beginning to comment on a few things he notices (
though not consistantly) .He goes to a regular play school .
His weaknesses are lack of fluency, lack conversational skills, and
lack of consistancy . He is a quick learner and has good echoic and
generalisation skills
Cognitive skills: All his therapists feel that he is almost age
appropriate on his cognitive skills.
Motor skills : He can improve in his fine motor skills and motor
planning.
Social and play skills .He enjoys being with peers and shows
inclination to reach to them. Elements of pretend play are also
emerging .
OUR PRESENT CONCERN :
During the previous fortnight he suffered from a severe respiratory
infection and received Antibiotics for the same . Once he recovered
from the infection he displayed strong autistic tendencies like
being " Lost" for a considerable part of the day, Increase in Self
stimulatory behavior , which was almost comparable to the starting
point of his jouney an year ago . Incidentally during the previous
fortnight he had been tapered off Fluoxetine . We have since then
reintroduced Fluoxetine .
Although he is almost back to his cheerful , and playful self now ,
this incident and some further understanding of NIDS makes us
retrospect on the following fact :
Our son had many respiratory and Gastro Intestinal illnesses in his
second and third year of life ( Mostly prior to his diagnosis of
PDD ) . These were considered to be infectious in origin and were
treated with antibiotics .:
We have the following questions :
1) Given the aforesaid background do you think there is a
possibility of Neuro immune dysfunction in his case ?
2) What are the interventions that can help him at this stage ?
3) We tried accessing the NIDS Protocol file from the archives if
the Group but it wouln't open. Can any of you guide us to the
relevant links to the NIDS Protocol ?
Would greatly appreciate your help and guidance. Please reply either
through the List or privately at rvenkat63@...

Hi Lori... Your comments surprise me and your
experiences are different from mine. I am a true
believer in the Montessori school my son attended.
Each school is different and depends entirely on the
philosophy of the school's director and staff. The
children are social and do play together in school.
Their interaction is by choice rather than by adult
insistance so it's natural. I have maintained that
parents must interview the director and teachers
regardless of whether the school is Montessori or not.
It's just a question of finding a good fit for you and
your child. Everyone is different--even the kids with
NIDS! J:)

I beg to differ on the Montessori issue. While there are many "Montessori"
schools, those that follow the true method, not just use their tools, are
designed for individual learning and down play social interaction. Many I
have toured ( and there have been ALOT!) let kids set their pace, have
individual snack time whenever the child chooses and have very little arts
and crafts, imaginative play or dress up...They are considered "treats" per
say. From everything I have read, from the professionals that I have
consulted with and from my own experience, social interaction is the most
important factor in preschool development for all children, but especially
those that fall anywhere in the spectrum. Academics and teaching a child to
be independent and a self learner are not and should not be the priorities
at this age and especially with this disorder. Preschools that emphasize
the social stuff, the interaction with peers and play, will be the
environment that will most challenge our children, but lead the way in their
overcoming their most difficult hurdles. If they don't play in preschool,
they certainly won't be doing it in Grade 1 and up.
Lori

What is meant by mands.
his interest is computer, TV, music, water, blocks(building blocks)
Now just commands following is taught to him.
let me know from you about mands and the possiblity of growth.
thanks
"abaantonia <antonia@...
improment with gfcf, we started OT, ST.
Does he have VI (verbal imitation?)
Does he have any mands (requests) in either vocalization or signs ?
What specifically are his current ST goals?
what is the frequency of his targets?
Since he has vocalization I would start with mands and increasing
his mands. What does he WANT? What things does he like?
A.C.

Trina,
I'm sorry I didn't understand your problem with the preschool.. I didn't
read your email correctly. I thought they didn't want your son because he
was autistic, not because he didn't have vaccinations. Here in Minnesota
all you have to do is get a note from a doctor. Or a document notarized
saying you object to the vaccinations. Sorry for the misunderstanding.
Marcia

I think this summary is interesting. It shows that what we discuss is not
some strange theory with no science behind it. The main problem is that
science is just so slow in coming up with answers/treatments.
Notice that they include neuropsychiatric diseases in their list of chronic
sequelae of infection. They also mention developmental disabilities and
seizures.
Cheryl

What is meant by mands.
his interest is computer, TV, music, water, blocks(building blocks)
Now just commands following is taught to him.
let me know from you about mands and the possiblity of growth.
thanks
"abaantonia <antonia@...
improment with gfcf, we started OT, ST.
Does he have VI (verbal imitation?)
Does he have any mands (requests) in either vocalization or signs ?
What specifically are his current ST goals?
what is the frequency of his targets?
Since he has vocalization I would start with mands and increasing
his mands. What does he WANT? What things does he like?
A.C.
******************
Responsibility for the content of this message lies strictly with
the original author, and is not necessarily endorsed by or the
opinion of the NIDS Research Institute.

I know of a family that got that for their down's
syndrome child. Barb

=====
Barb Katsaros
barbkatsaros@...

What is ip6? A vitamin? Barb

=====
Barb Katsaros
barbkatsaros@...

I have known several people to take celexa without the
side effects common to paxil. There is also a new one
out that is supposed to be even better, but I have
forgotten the name. Someone recently posted an
excellent source that had great summaries of the drugs
and their side effects, I think. Maybe they could
repost it? Barb

=====
Barb Katsaros
barbkatsaros@...

Dr Goldberg recomended the ip6 in the book children with starving brains.
vinnie.

Hi all,
This is somewhat off-topic. My husband has depression and OCD issues. He
took Paxil for a while with good results, however, it caused sexual side
effects and terrible nightmares. He tried Buspar for a while, but it has to
be taken twice daily and he constantly forgot. I am urging him to go back to
the doctor, but he thinks that all SSRI's will either cause the same side
effects or need to be taken twice daily. Does anyone know of an SSRI that
can be taken once daily without the side effects? I am afraid our doctor
doesn't know very much about this.
Thanks,
Tracy

Hi Everyone. I am extremely interested in this subject as my 4 year old son
is a December baby and therefore always the youngest in the class. He is
now in JK at a great private school that ends at SK. The problem is putting
him in the public school system. Right now he is a very academic child,
reading, doing basic math problems, while the rest of the class spends 2
weeks on words that start with the letter "T" and only counts to 10. He is
always working at a grade one level, while his fine motor skills are at an
SK level now - He prints his letters, his numbers to 10, his name and short
sentences. My first instinct would be to hold him back because socially he
is young and as high functioning autistic, has some language delays.
However, he does need to be challenged academically and I am certain that
keeping him back a year will bore him and not allow his academic strengths
to blossom. What would you advice in this situation?
Lori

Marcia's description of play sessions and other incidental teaching she did
with her son reminds me of what we did as well. It is so important to take
the child at the level they are and tailor experiences and teaching moments
to them rather than just throw them into a group or other situation and
expect them to benefit. While some kids will progress that way, many will
just shut down.
With all this ABA vs. Floortime talk, I wanted to mention that it really
doesn't have to be an either or situation. The best programs blend various
approaches individually for the child and also the parent or therapists doing
the program. I think the main question on which program to use as an overall
approach is what your child responds best to and what you feel most
comfortable with. Early on, mine crumbled with ABA's high structure and
drills but blossomed with the playful, building nature of Son-Rise (a more
intense version of floortime). Later, when he was motivated by people and
interested in learning, some ABA drills done in a game or fun format, really
helped him develop some skills that he wasn't gaining in other ways. We've
added more structure as we've moved along, but have also found that we need
to balance this carefully with following his interests and fun or his
cooperation wanes and we miss really amazing learning experiences. I've also
seen kids do really well with ABA early on and then be able to blend in
Son-Rise or floortime type activities which help their social interaction
blossom.
So my opinion is choose the best program to fit your child's personality and
needs and then blend in whatever seems appropriate. I think through the
years we've used pieces from just about every program and therapy out there
which has been much more useful than if we had just put all our efforts into
just one approach and didn't see the benefits of others.
Gaylen

I really agree with holding back for social delays because once they get into
first grade there just are not the social opportunities that there are in
kindergarten. Here's a crazy idea. If your district is 1/2 day kindergarten,
what if he did kindergarten for 1/2 of the day and then first grade for 1/2 day
to get the academics. I wonder if the school district would ever allow that?

I don't know what ip6 is, but I do know that Dr.
Goldberg is very much against the use of carnosine.
There was an article posted once on it, and from what
it said, it can have some detrimental effects on the
brain. Barb

=====
Barb Katsaros
barbkatsaros@...

So does this mean they are pronouncing it NIDS?
We are close really close!
God Speed,
Sherri
--- "cynthia_mclaughlin

=== message truncated ===

Donna,
You are right Dr. G is not a fan of ABA. While Dr. G is the expert when it
comes to medical issues, I don't think he has all the information about ABA. He
is probably thinking of the ABA of twenty years ago, which was not what it is
today. My husband and I were therapists in the Lovaas program more than twenty
years ago and made the conscious decision not to do this with our son. It was
not until a friend from across the country explained how only positives are used
now that we even looked at ABA. It worked for us. ABA along with Dr. G is why
our son is recovered today. I don't think either ABA or the medical treatments
wouldn't have worked to bring him this far if they were done independent of each
other.
As wonderful Dr. G is about giving his life to help our kids,there are some
things Dr. G doesn't get about our daily lives. This is not his fault because
he doesn't live this the way we do. I remember when I was worried about the way
Ryan was behind physically, he told me to just put Ryan in Karate and Gymnastics
and he would be fine. What he doesn't realize is that our kids shut down when
put in situations that are hard for them. This doesn't work for our kids unless
they are ready to take directions. Putting my son in gymnastics without
preteaching (which I did) was a disaster. ABA takes you step by step to teach
them all they need to know.
We did ABA in the most natural way possible. We tag teamed Ryan. When I
wasn't working with him, my husband was and when he wasn't, my daughter
(only 4 years older) was teaching him "pretend play." We paid her a dollar
an hour to do this. (Don't turn us in for violation of the child labor
laws). Anyway, sometimes the therapy was in the market while he was in the
cart and we were strolling down the isles. We did it at the park when I was
pushing the swing. We were always working, although Ryan didn't know it.
We only had one paid therapist, Pam. She came about 8-10 hours a week. I
found her at a swimming class, she was so good with Ryan. Very positive,
had clear limits, but didn't put up with any of his crap. I think she
thought I was crazy when I approached her and asked her if she would like to
work with my child. At first she said "no." Who would want to work with
this crazy,obnoxious kid?
Anyway, I persuaded her to watch the tape when Mindi our ABA specialist,
came for a weekend to teach us ABA. She had no training before that and the
other therapists I hired hadn't worked out. Pam is now in Chicago doing
this as a profession. If any of you in the Chicago area need help. She is
the best!!!
In addition, as part of the IEP, I had the school send a speech therapist.
They also sent her in the summer. ( The school had never done this before.
This was also the first time the therapist did this in a home environment.
Ask for what you need, don't wait for the school to offer it. ) The school
provided only an hour a week of speech therapy, but the good part was I
would watch her and learn what to do and she lent us the costly materials
you need. The speech therapist was not trained in ABA, but good teachers use
it naturally. I would then teach Pam.
At first his speech was not conversational and he wanted to talk and never
listen to your answer. It was almost robotic at first. He didn't have
volume control or inflections in his speech. That all had to be taught. It
took time. Years, but we are normal in speech now. He still doesn't like
to call friends on the phone, but I think that is because he is worried he
will be rejected.
We also borrowed friends "normal" kids. We had the Kool-Aid house with
Nintendo, a trampoline and the best snacks. We started with one kid once a
week for socialization. I played too because my son started by hiding in
the back of the house whenever anyone came over. After a very long time we
graduated to two kids so my son could watch interaction too. I still
facilllitated the group. It was a very long time until he learned to play
on his own with others. So I continued to play too to make sure these kids
had fun and would come back.
As soon as he was somewhat compliant we moved away from the chair. We only
used the chair for discipline. We never got mad or showed any emotion. We
would just take him to the chair and run him through his compliance paces.
With commands like," Stand up" "Sit down," "Clap your hands" And the thing
we wanted him to actually do like,"Put the truck in your room" If he
complied, he was immediately out of the chair. It didn't take long for him
to realize that we were serious and the chair was faded out. We no longer
needed it and disciplined in a more standard way.
Hope this helps,
Marcia

Katie,
He needs to stay another year or he will be so behind socially he won't be able
to catch up. My son was the oldest in the grade and always found friends with
the youngest kids and these kids were often too advanced for him. His best
friend now is a year younger than him. Don't listen to the teacher, she doesn't
live what we do daily. I also am a teacher and you can't hurt him by repeating
Kindergarten, but you can hurt him by sending him on.
Marcia

through Barnes and Noble Univ.
http://educate.barnesandnobleuniversity.com/educate/bn/home/catalog/overview.jsp\
?productId=5576
You are supposed to buy their 2 books, but it looks interesting. The course
starts Feb. 5.
Susan

I know finding a preschool that is appropriate is hard, but why would you want
your kids in a school that doesn't want them? Find one that cares about your
kids.
Marcia

I thought this might be interesting to some of you:
<A HREF="http://www.hhmi.org/news/caron2.html"
May Hold Key to Hyperactivity Disorder</A
interesting research on how positive effects of ritalin and
other stimulants
may be related to serotonin changes rather than dopamine like
originally
thought
<A HREF="http://www.acnp.org/g4/GN401000044/Default.htm"
and Behavior, A General Hypothesis</A
very thorough description of behaviors associated with serotonin
problems
including sensory integration problems

I'm not sure what the "tritation" part is but my son had electro-dermal
testing done summer before last. That's what got us to look at viral issues
since HHV6 came up very heavily with the test along with a few other viruses.
They did give us a vial that was supposed to represent the viruses he had
trouble with and we were told to have my son sleep with the vial to ease him
into dealing with the viruses and being able to treat them. Weird, yes, but
I figured no harm just sleeping with a little vial. He slept with it and had
some weird behavioral stuff for the first week (in hindsight, very similar to
die-off reactions he's had with Lauricidin and Valtrex) and when I was ready
to chuck the thing out the window, he pointed out to me that the huge plantar
warts that had been on his feet for almost two years had almost totally
disappeared. We had tried everything to get rid of those stupid warts with
no luck. I know they were there a few days earlier but then, as if
overnight, they were almost gone. A few more nights sleeping with the vial
and they totally disappeared and haven't returned in more than a year.
Weird... doo doo doo doo.
Gaylen

Gaylen,
My son has been a patient of Dr. Goldberg's for three years. We just
recently retested the NK cells and found out the good news. I can't say for
sure which medicine helped increase these cells. I would say the kutapressin
has probably had the most dramatic effect on his condition.
Sharon

In a message dated 1/28/03 10:30:06 PM Central Standard Time,
cynthia_mclaughlin@... writes:

Yes, in Minnesota our daughter's program has been covered by Blue Cross Blue
Shield (BCBS) for over 2 years. Minnesota's Attorney General sued BCBS over
this issue and received a multiple million dollar settlement + coverage for
programs. He has since taken on another major insurance company on this
issue. Every single medical insurance plan will have a 'medical necessity'
clause in it. That is essential to use that to get coverage. Behavioral
therapy is essential for each and every autistic child to reach their full
potential. If you wish to have it I have a multiple-hundred page appeal
document that I used with my insurance company when we were denied. Please
email me offline @ mailto:dave.serrano@... and I can send it to you.
Dave Serrano.

We've used NACD (www.nacd.org) for several years for neurodevelopmental
evaluation and programming. NACD is a sort-of off-shoot from IAHP when the
Institute's founder's nephew who worked for IAHP for many years broke away
from them to form his own group that also included more work on sensory
issues and made programs easier for parents to accomplish. IAHP can be very
helpful for some kids but it can also be very demanding. They require strict
adherance to many hours of work with the child each week, following a tight
protocol. They also focus more heavily on repatterning (taking the child
back through the crawling stages) than NACD does.
We have found NACD to be extremely helpful for my son especially in dampening
sensory sensativies, boosting auditory and visual processing, tailoring
academic teaching appropriately and correcting visual problems.
Gaylen

I'm generally a lurker on this list but a behaviorist at heart. We have
used several behavior techniques and from what I have seen a good verbal
behavior program is the best. Please see http://www.drcarbone.net for more
info (you could also do a search for Jack Michaels, Sundberg, Partington).
Regards,
Dave.

Is anyone currently doing ABA for their child through a specialized school and
having it covered by insurance?
I recently took my son for an evaluation for ABA and I was excited at what I
witnessed him doing on his initial visit.
I am anxious to begin his ABA sessions and I have a pediatrician that will work
with me to write a prescription, but because the codes that are submitted to
insurance from the Clinic fall in the PDD/Autistic category, I am being told
that Insurance does not cover Taught Socialization Skills.
I understand that each Insurance Co. is unique and have their own guidelines,
but I feel that this particular company does not understand the necessity.
Does anyone have any suggestions?
Thank you

Today I spoke to a woman who has a 20 year old autistic son. Her son, as mine
had speech and then regressed.
Because she experienced this regression several years ago she had never heard
of the NIDS protocol / Dr. G.
She did however come from a medical background and she moved forward by
studying Nuerological disorders. One thing that she highly reccommended me to
look into was an Institue in,
Pittsburgh PA. called The Institute for the Achievement of Human Potential.
This institute offers resources to help parents to enhance the developement of
their children physically, intellectually and socially. Apparently, there is a
week long session offered to parents of "autistic" children where parents get a
clear understanding of how thier childs brain works???
Anyone familiar with this Insitute?
Thank you

We started Kutapressin last Thursday and the last few days I've noticed
that my son's pupils are dilated constantly? I've let Dr. G. know and
he wants me to keep him informed if it continues. Has anyone else run
into this with kutapressin?
Thanks.
Paulette

anyone tried these together?
please reply.
thanks vin.

improment with gfcf, we started OT, ST.
Does he have VI (verbal imitation?)
Does he have any mands (requests) in either vocalization or signs ?
What specifically are his current ST goals?
what is the frequency of his targets?
Since he has vocalization I would start with mands and increasing
his mands. What does he WANT? What things does he like?
A.C.

San Jose is about one hour from L.A. by air; by car, the fastest route is
Interstate 5, about a 5-6 hour drive. There's also a coastal route which is
very scenic and has interesting stops along the way (State Hwy. 101), but you
need a couple of days to do it.. If your child can tolerate long car trips
(mine does pretty well; we keep him busy with music, books, snacks, and stops
every two hours or so), this could be a fun option.
Donna

A new list has been created: cfs_name_change_poll
The list is public and unmoderated. Membership is not required to view
or post messages, but is needed in order to vote on the new name in the
Polls section.

I had Dr. G. write a letter saying that due to medical reasons, our son will not
be vaccinated. I will do the same with my daughter as she enters kindergarten
in the fall.
-Noelle

Interesting find Cynthia, here is what it says on PubMed:
Nat Immunol 2003 Jan 27; [epub ahead of print]
Angiogenins: a new class of microbicidal proteins involved in innate immunity.
Hooper LV, Stappenbeck TS, Hong CV, Gordon JI.
Department of Molecular Biology and Pharmacology, Washington University School
of Medicine, St. Louis, MO 63110, USA.
Although angiogenins have been implicated in tumor-associated angiogenesis,
their normal physiologic function remains unclear. We show that a previously
uncharacterized angiogenin, Ang4, is produced by mouse Paneth cells, is secreted
into the gut lumen and has bactericidal activity against intestinal microbes.
Ang4 expression is induced by Bacteroides thetaiotaomicron, a predominant member
of the gut microflora, revealing a mechanism whereby intestinal commensal
bacteria influence gut microbial ecology and shape innate immunity. Furthermore,
mouse Ang1 and human angiogenin, circulating proteins induced during
inflammation, exhibit microbicidal activity against systemic bacterial and
fungal pathogens, suggesting that they contribute to systemic responses to
infection. These results establish angiogenins as a family of endogenous
antimicrobial proteins.
PMID: 12548285 [PubMed - as supplied by publisher]

Just noticed on the new Rx for Nizoral that it says to
take with food. Does this mean it's a little rough on
the stomach?
Thanks.
Cynthia

Hello,
I'm catching up on digests again, this time from being out of town for a
Verbal Behavior workshop. So, please forgive me if these ideas have already
been posted.
First idea: "Emergen-C" drink packets. I get them at the health food store.
They are little packets that look like cool aid packets. You pour them into
a cup, then add water and they fizz. They are packed with vitamins,
espcially vitamin C, and taste like soda. My son asks for his every
morning. The drawback is that you can only give one a day because you don't
want vitamin overload.
Idea number two: Homemade "lemonade." I add just a splash of Knudsen's
100% lemon juice or lime juice to bottled water and then sweeten it with a
tiny tiny amount of stevia (a natural sweetener that's 300 times sweeter
than sugar). I get all of this at the health food store. If you want it to
taste like Sprite, add both lemon and lime and a little club soda. My son
drinks this in the afternoon as a treat.
I sure hope this helps!
Liz J in Wisconsin

Hi, NIDS listmates,
I just thought I'd pass along some info I got by email from Southwest
Airlines. I don't have any financial interest in the airline (wish I did!),
but I thought these fares may help someone trying to get to California from
the east coast.
According to the email, to celebrate the beginning of non-stop service from
Baltimore/Wash to San Jose, CA, Southwest Airlines is offering $79 each-way
fares. I have no idea if San Jose is near Dr. Goldberg's office, but the
fares may be low enough to warrant using connections or whatever.
I don't know anything else, except the website. Please go there for more
info:
www.southwest.com and go to "hot fares."
I hope this helps!
Liz J in Wisconsin

Someone just emailed this to me, it's pretty cute.
Mother Reclassification
A woman named Emily renewing her driver's license at the County Clerk's office
was asked by the woman recorder to state her occupation. She hesitated,
uncertain how to classify herself. "What I mean is," explained the recorder,
"do you have a job, or are you just a .....?" "Of course I have a job," snapped
Emily. "I'm a mother." "We don't list 'mother' as an occupation... 'housewife'
covers it," said the recorder emphatically.
I forgot all about her story until one day I found myself in the same situation,
this time at our own Town Hall. The clerk was obviously a career woman, poised,
efficient, and in possession of a high sounding title like, "Official
Interrogator" or "Town Registrar."
"What is your occupation?" she probed. What made me say it, I do not know...The
words simply popped out. "I'm a Research Associate in the field of Child
Development and Human Relations."
The clerk paused, ball point pen frozen in midair, and looked up as though she
had not heard right. I repeated the title slowly, emphasizing the most
significant words. Then I stared with wonder as my pronouncement was written in
bold, black ink on the official questionnaire.
"Might I ask," said the clerk with new interest, "just what you do in your
field?" Coolly, without any trace of fluster in my voice, I heard myself reply,
"I have a continuing program of research, (what mother doesn't), in the
laboratory and in the field, (normally I would have said indoors and out). I'm
working for my Masters, (the whole darned family), and already have four
credits, (all daughters). Of course, the job is one of the most demanding in
the humanities, (any mother care to disagree.?.) and I often work 14 hours a
day, (24 is more like it).
There was an increasing note of respect in the clerk's voice as she completed
the form, stood up, and personally ushered me to the door. As I drove into our
driveway, buoyed up by my glamorous new career, I was greeted by my lab
assistants - ages 13, 7, and 3. Upstairs I could hear our new experimental
model, (a 6 month old baby), in the child development program, testing out a new
vocal pattern. I felt triumphant! I had scored a beat on bureaucracy! And I
had gone on the
official records as someone more distinguished and indispensable to mankind than
"just another mother."
Motherhood.....What a glorious career! Especially when there's a title on the
door.
Does this make grandmothers "Senior Research Associates in the field of Child
Development and Human Relations" and great grandmothers Executive Senior
Research Associates"? I think so!!! I also think it makes Aunts "Associate
Research Assistants".
Please send this to another Mother, Grandmother, Aunt, and other friends you
know.