Nids

When I get out of the military in a month we will move to Orange
County, CA.

Hi all, I just joined this group the other day. Are there any adults
here who have had success with the nids protocol. My name is Brian
(31)and I have an undiagnosed disorder; I've had so many tests done
since I have been in the military and have had nothing but normal
results. I know its not Gulf War illness because I've had these
symptoms my whole life. Cognitive therapy doesn't work and neither
has all the antidepressants, mood stabilizers and psychostimulants I
have been prescribed. Done lots of research of my own and I'm
guessing now that its Chronic Fatigue Syndrome/Autistic Spectrum
Disorder. It may sound wierd; like you might wonder how come my
parents never noticed it ( and I wonder the same thing ). The
problem is my Dad and my big brother have the same thing and it seems
everyone has been in denial for years and years up until now.
Well, I could say alot more but I just wanted to know if there were
any adults in this group who can relate. I am still in the Army but
I am supposed to be released in less than a month, and as soon as
that happens I plan to go see Dr. Galpin since it will close to
home. Is there any hope for recovery for adults with NIDS?

Tracy -
I needed to reply to your email. I, too, am extremely frustrated that
people, especially doctors, just aren't listening. I look back and know
that my son had food allergies from day 1, but the doctor never took my
complaints seriously. It took me almost 5 years to convince someone to
take this seriously. In February, my 1 year old started to slip just
like my son did. They didn't lose things overnight, just very gradually
slipped into "autistic" behaviors. She lost 6 words and 2 signs over the
next 3 months. Eye contact and social behaviors also decreased. Not
enough to get her an autism diagnosis, but I believe she was well on her
way to getting one. We saw Dr. Goldberg with her in July. Within a
month she had regained all but one word, both signs, and was back to her
flirtatious self with strangers in checkout lines. No more zoney
episodes and no more clinging to me. The only thing we did was put her
on Famvir and check her for food allergies and remove those foods that
she couldn't tolerate. It breaks my heart that no one did this for my
son and that as a result he has had to struggle so hard to get where he
is today. Our new pediatrician supports what we are doing since I am
telling him that it is making a tremendous difference. Still, he doesn't
believe in all this and smirks whenever we talk about it. He doesn't
believe my daughter was becoming autistic. I'm not sure there is
anything I can do to convince him, short of taking her off the meds and
seeing what he says in a couple of years (NOT an option). Thank God for
Dr. Goldberg. Now at least one of my children will be able to enjoy good
health and normal development and social relationships.
I was able to convince our old pediatrician (we just moved) what an
incredible difference Dr. Goldberg's protocol can make, but it took time
watching my son becoming healthier - nothing I said made much difference,
only the unrefutable blood test results. He is now referring patients to
Dr. Goldberg. I wish he would take the next step and actually learn the
protocol himself, but that may take more time. In the meantime, I plan
to keep him up to date on how my kids are doing. Hopefully this new
doctor will come around too, but in the meantime at least he is not
interferring. Reaching one person at a time with scientifically backed
results is the only place I can start right now. After I get my kids
healthy I'll tackle larger groups. Just keep trying to get the message
out - one voice can make a difference. I'm not sure my anger will ever
go away about all the lost years, but I'll try to channel it into making
a difference for someone else down the road (except in the middle of the
night when I lie awake wanting to do bodily harm to those doctors who
could have helped but didn't....). Hang in there - this is a great place
to vent!
Michelle
On Sun, 30 Sep 2001 10:43:16 EDT whcmccain@... writes:

Hi all,
I have been reading Barry Kaufman's book The Son-Rise Program. This is a
really good book and has given me a lot to think about. Mainly, it has
changed my thinking about my son's progress and made me start to be happy
about his success's and to not compare those to other children. The really
weird thing is that the more I read it, the more I agree with Dr. Goldberg
that my son indeed does NOT have autism but is suffering from something else
entirely. I have been watching our home movies recently and have discovered
that I am not CRAZY. I had come to believe that my son was indeed autistic
from birth and that I just hadn't caught it. THAT IS JUST NOT SO! I have
video tape of my son at 2 years old coloring and using a fork--both he can
not do now--, waving, making direct eye contact, taking notice of people
coming in and going out of the room, and using pronouns correctly. My son is
considered severe on the autism spectrum. Kaufman's son was also considered
severe. Of course, they caught his autism very early. By 19 months old,
they had already been working with him for a while. In one section of the
book, he describes the first time his son cried for his mom. He had never
done that before. MY SON HAS ALWAYS PREFERRED MY COMPANY TO OTHERS AND HAS
ALWAYS MADE THAT KNOWN. Sorry to vent on this. I have just had an
incredible realization and yet, still feel so frustrated. Watching our home
videos, it is hard to believe that the child sitting with me now is even the
same child. I believe that the chicken pox vaccine my son had at 2 years and
2 months is what pushed his immune system over the top! What is my point in
all of this? I have no idea. I just need to vent to others who probably
also feel my frustration. I wish I could get some "autism expert" to watch
our home videos and then explain to me what happened. Will we ever get
other's to listen to us?
Tracy

Kristina,
I understand sorbitol in addition to being a sweetner is also used in
larger doses as a laxative, you may be able to give it straight or
add it to baking. Our local health food store sells suckers
sweetened with sorbitol and there is a warning on the package that
too many will result in loose stools.
Susan

Hello All,
I need to take my son for his first time dental appmt. (ugh) and want
to know if anyone can recommend a good dentist in the Glendora (San
Gabriel Valley are)? I received a list of "special Needs Dentists"
from my Regional Center, but wanted to know if anyone had any
personal experience (good or bad) with any local dentists. Also, is
there any feedback anyone can give me to make the experience less
stressful???
Thanks!
Debbie

Diet is a very important piece of what is going on with our kids. We have
never gone GF/CF even though my sons food screen showed almost everything in
the moderate to severe range. He is being treated for NIDS which includes
some dietary avoidance. He absolutely has to avoid ALL milk and dairy,
whole wheat/grains, chocolate, red things,etc. If something has any form of
milk, butter, cheese, or whey in the ingredients, he doesn't eat it. I
found out a long time ago that a slip-up haunted us for at least a week. It
doesn't manifest in ear infections or gastro issues, just brain symptoms.
I might add that diet changes alone had no effect. The problem is only
obvious with all the other issues addressed. (viral, yeast, allergies, etc)
The neuroimmune website has the Do's and Don'ts of diet under the autism
articles section.
Cheryl

Doris,
My son's pediatrician asked me if Dr. G. could send some kind of treatment plan
or or methodology for why he is prescribing Valtrex and Nizoral for my son. I
relayed this to Dr. G's office and they asked for the pediatrician's fax number.
What they're going to send, I don't know, but hopefully, it will help my son's
doctor to feel a little more comfortable and be informed.
Kathy

usually you can order it from any drugstore

Hi Linda,
To me it means that in the children they tested they were already finding
evidence of NIDS. Activation and the body trying to balance things back
out.
What caused the activation, who knows. It could be the moms immune
dysfunction and/or autoimmunity, exposure to some type of infection/toxin,
pre-eclampsia, blood incompatibility like when the mom is rhesus negative,
etc.
Cheryl

Hi all,
Need some help. Been trying to find the polyvisol vitamin for children in the
chewable form. Has anyone had luck finding this product? Thanks.

I am just really surprised that he qualifies for a full-time aid and yet is
not exempt from taking the test. It is totally up to you on how strongly you
feel about the aid being present during the test, but it is my understanding
that at his young age, these types of tests are used more as a measure of how
good of a job the school district is doing of educating each child and does
not really matter as far as your child is concerned. It shouldn't affect his
placement in any way.(This opinion is based on Texas law. I may be wrong in
your state.) You might look at this as an opportunity to see how he can do
on his own, esp. now when it doesn't really matter. If he does terribly,
then the school district will be able to see that he truly does need the aid.
If he does great, then you can celebrate all of your and his hard work. One
warning: If you believe there is a possibility that he may become so
frustrated without an aid that he gives up completely and/or becomes a danger
to himself or others, then HE MUST HAVE THE AID WITH HIM!
Good luck.
Tracy

Hi Kris, here are a few more suggestions. I tried giving my son orange
flavored Metamucil but he wouldn't touch it.
Omega 3 oil - Essential Balance Jr. flaxseed oil. I give this to my 2 boys
and it has improved their eye contact, focus and is a good lubricant as
well.
Here are some other suggestions that I read on another list, but I have not
tried them with my kids.
KidLax (by Renew Life): This is a tiny capsule, easy to swallow. It has
prune & fig in it, plus rhubarb and peach leaf as digestive aids. Also, it
has flax seed and three different probiotics. Can give as often as needed
without getting dependent or causing any internal damage (like some
laxatives can).
YummiBears makes a fiber supplement made from chicory root. These look and
chew up just like gummy bears. A bit on the expensive side, but a good
alternative for a sensitive child that won't take most supplements.
Magnesium supplement (comes in capsules--break apart, and put in
food--hard to detect). Although the typical daily dosage for a child would
be around 250 mg., 400 or more (I believe up to 1000, although I've never
had to go over 600 mg.) can safely be given to aid elimination.

You can get earobics at www.cogcon.com or call 1-800-654-6623

Hi. My son has a terrible processing problems. I'm interested in
getting the Earobics for him. He's not a teenager though. He's 7 years
old. Thanks for any info in advance.
Sincerely,
Diane B.

EAROBICS is all you key into on the internet it will come up

have you checked the ASO titer? Has he had strep? MY child had tourettes
as a result of strp we did not know he had. Dr G treated it with E Mycin

Has anyone used the nicotine patch for the "tourettes" like symptoms of
autism (verbal tics, motor tics, etc). If so, could you please email me with
your experiences? Our neurologist has suggested this, but I'm very reluctant
as David would be the first child he's used the patch on. However, these are
the symptoms of David's autism that the SSRI's, antivirals, and anti-fungals
have not yet addressed.
Thanks!

Kristina,
My kids have all struggled a LOT with constipation; restricted sugar, wheat
, dairy helps them tremendously. Getting the yeast under control was crucial
too (diflucan, then amphotericin B). If they "binge" on wheat/dairy, we get
a recurrence of the constipation, accompanied by the zoniness, behavioral
issues you describe
Kate

Just a note to let listmembers know that Dr. Goldberg WILL be participating
in today's chat. He plans on participating in next weeks chat as well.
Thanks,
Sandy

Hi:
I gave Obiwja tea to my 12 yrs.old son, about a year ago and he got very
hiper. Needless to say I didn't give it to him anymore.
Julie Lopez

I am a child psychiatrist working with autistic children in Turkey. I
want to know about the B6 B15 dosages that you are using. Thanks for
your help Ayse Avcý MD

Hi Elvei,
Hope you are well. We are working on setting a new date for Dr. Goldberg's
lecture. In talking with him, it sounds like Sat. Oct 27th is going to be
the best date. The time will probably be from
1:00pm to 6:00pm. Does this work for you and others? Will e-mail you back
when we get confirmation on this. Thanks.

Trina,
Dr. Goldberg has talked about it for one of my daughters but we have not
started.
Lici

Has anybody had any experience with ojibwa tea? Please post with any
experiences. Also, has anybody tried Chinese herbal
medicines/homeopathic therapies?
Thanks,
Aliza

i am sure you got this too....
this just made me really sick!
i thought about that this morning, how many fathers left behind a
responsibility like this to a mom.......that is so scarey!!!

I hope as many of you who possibly can will reach out to this family in NY.
Ricci

Kristina,
More fruits and vegetables should help with the constipation, regardless of
whether or not the diet is GFCF. My son has had problems with constipation
in the past and increasing the fruits and veggies helps him very much. He is
"almost" GF - I allow some infractions and use enzymes. Best wishes,
Vicki

Jill,
I'm sorry I don't know the manufacturer of the computer program Ready for
Letters. I probably used it eight years ago so it may no longer be in
production. But there are a lot of good programs out there.
Marcia

Hi all,
Are there any parents out there that do NOT have there kids on a GF/CF diet??
We are really struggling with constipation here with our little one.....At
first, I thought it was the anti-fungal medication because when he was on
Nizoral for 4 months (the only time in his life) he was having regular bowel
movements! Then we switched to Diflucan and I decided to go completely
Gluten free again (we had been GF/CF for 18 mos. prior to seeing Dr. G and
then started giving him wheat because Dr. G said it was OK). Now I have him
back on wheat because it really does seem to me that the wheat (fiber!) helps
him to go and the rice/potato diet clogs him up!
If this kid is constipated he is a zoney, spacey, mess! Do ya blame him??
Poor guy! I am confused though because he has tested positive for gliadin
and my pediatrician told me to keep him off wheat completely! His allergy
(blood) test also showed a moderate reaction to triticale (a derivitive of
wheat). Does anyone know if the gliadin test can ever come out false
positive?? We don't seem to have an increase/decrease in
anything--behaviors/sleep/talking, etc. in regard to the diet. However, we
notice that the constipation greatly affects everything! It is key to him
being happy, alert, talkative and able to learn.
Anybody else in this same boat or similar???
Thanks,
Kristina

Doris,
Check with Dr. G about administration of tylenol; tylenol is bad news for my
three nids kids---i use ibuprofen when desperate, but most of the time can
get rid of pain with a homeopathic formula.
Kate

I have a young married female relative
with two young kids & a loving husband etc
down the road who has
cancerous nodes all over her body.
They have removed the main ones
in the brain & neck
but their are small ones everywhere else.
She has been around the world
looking for cures & second opinons,
What would you say to her?
What would you say to her?
I would struggle with such a personal visit
because its a little too close to home, for comfort,
I'm terrified of people,
I'm terrified of Doctors (& everything else)
The best I can do is drop off a note.
What a coward I am.
My note: Part 1 of a 7 day plan.
http://3service.freeservers.com/Imagine.html

HI,
I dont know if this helps at all but my son gets very aggressive at times
to and needs a place to calm. At first I worried about reinforcing his
behavior also, but what I learned is when he is at a place where is system is
so worked up, the only way to bring him back down is give him time to calm,
these children many of them anyway dont have the resources to understand
sorry when your mad you need to talk about it or take a breath, and what they
need to do is calm themselves down. We made a beautiful room with calm paint
and clouds and mats arranged on wall with carpeting, I could have thrown him
in a locked room but the idea of putting him somewhere else to us was not
meant to be a punishment but a chance to recooperate(SP?) and get himself
together.
Crystal

hello!
Question for those of you who have gotten
Dr Goldberg to talk with your child's pediatrician
How did you do it ??
My son's new Pediatrician is 'highly motivated'
to learn more about this NIDS process.
His interests are in biochemistry and auto immune
dysorders.
We had our 'meet/greet' on Thursday and I couldn't answer
the questions he asked me (and he had some GOOD questions ...)
I called Dr G's office the next day to see if I could
get the 2 Drs together for 5 mins (if we decide to go the kutapressin
route we would only do it under the watchful eye of the Ped. since
Dr G is in Calif).
In a nutshell, they said 'If Jacob's Ped. can catch Dr G ......'
This response annoyed me ....
Thanks for the emails on the Famvir issue - the tylenol has helped a little
but we're still having some major head pressing ... oi!
I'm thinking about contacting the manufacturer and querying them
on some of the side effects ...
Thanks!
doris
Maryland

Thank you for your quick response on the software for teens/adults. Could
you give a phone number/ordering information. Auditory processing is a
problem. What can you tell me about the Earbiotics II and what is the age
of the teenager who likes that software? What improvements did you notice
from the use of the software?? This sounds like an excellent idea.
Linda Smith

If auditory comprehension is an issue ther is new Earobics software for
teenagers and adults
liked earobics II.

I cannot afford to see Dr. Goldberg. Are there any Drs in the Texas area
that follow Dr. Goldberg's methodology?
Thanks,
Angela Day

Does anyone know of computer software for austictic spectrum NIDS teenagers.
He is a computer wiz but has essentially missed all academics for grades
8, 9, 10. He has been on home school but due to his poor memory and
ADD/Obsessive Compulsive and Oppositional Defiance has only used the
computer for playing games and academics and social are the areas that he
needs help in from the computer programs.
Linda Smith

Marcia,
Is Ready for Letters the company name or the name of the computer disk. If
not the company name, can you remember what company produced this disk? I
can't seem to find it on the web. Thank you.
Jill Fenech

Sharnita,
I think you are very smart to use computer software to help your child. My son
is thirteen and recovered. The computer was instrumental in helping him. He
loved working on it and we used it as another one of our ABA therapists. The
best part was that you didn't have to pay it and my son never tired of working
on it.
All of the Edmark company programs are great and were designed by linguists. My
son learned a lot of language there. Another program that was very helpful was
called Ready For Letters. It wasn't about the alphabet like it sounds but
rather taught him prepositions which our kids have a lot of trouble with. That
was a long time ago. I hope it is still around. It was very fun. They all
are. Some of the Davidson and The Learning Co. programs are also great.
We also used the computer as a reward. Most of our kids love the computer.
Ryan would do it for hours. They love that predictability thing. Ryan hated
anything physical, so to improve his motor planning and muscle tone we would set
up obstacle courses, where the last thing would be an Edmark computer game.
That made him want to do it. Hope this helps.
Marcia

We've had some success using language development software put out by Edmark;
it's very specific to the language age of your child and is visually
oriented.
I don't think they market it as for autistic children, but for
language-impaired children
Kate

Thanks to all of you who offered help and support last week when my son got
aggressive at school. Dr. G responded to my SOS immediately and so did you! We
met with the principal on Wed and asked for a behavior intervention plan and he
agreed. Overall, he is doing very well. He rallied by weeks end and had his
best day ever on Friday.
It is hard to determine sometimes whether he feels bad or is just being defiant.
Today, Monday, he would not go to school. We put him in time out on the stair
and told him it was there or school. He eventually went, 30 minutes late. Any
suggestions there? When he needs a safe place because he is overwhelmed, how do
you use it without reinforcing the bad behavior? My son is quite a master of
manipulation. We are trying to be consistent.
The story Marvina told is great. Our aids are angels. We should start a
support group for them! I printed the story out, so she would get a chuckle out
of it.
Thanks again and thank God Dr. G wasn't on one of those planes.
Ellen

My son loves Winnie the Pooh, Mickey Mouse and Thomas
the train. They are easy to learn and he is very
proficient in them. I also have Away we go (which was
suggested by my speech pathologist) and Zoo Phonics.
All supporting my autistic son. theya re all really
good software.
Good Luck!
Shelley

Does anyone know of any computer software thats out
there specifically for autistic kids. Any responses
will be greatly appreciated.
Thanks!

I guess Quackwatch never heard of this study:
http://www.feat.org/scripts/wa.exe?A2=ind0104&L=FEATNEWS&P=R2521
(I've clipped the rest of the article, but you get the gist.) FWIW, I
think that talking to Quackwatch is like spitting in the wind, but maybe
I'm just cynical.
Avril

My son Also has had an increased eosinophil count since starting celexa. I
think this an allergic response to the drug rather than the coating because
how much of the coating could he have ingested at 1/8 to 1/4 of a crushed
tablet. My son started out with being hyper, climbing constantly,turning
off his favorite videos repeatedly etc. It then escalated to almost a
psychosis with being completely zoned out, continual babbling about nothing
that made any sense, running literally from one wall to the other kicking
and hitting it, acting like his clothes were burning him, seeking sensory
input at the exclusion of all else, eventually his apraxia and language
processing even got worse. Needless to say we took him off the celexa.
Please note that this is a child that has never had any behavioral issues
and very few sensory problems. The regression was a little too frightening
for me to take. I'm not sure what our options are as we haven't had much
luck with any of the 3 ssri's we've tried. Wendy

Hello Everyone,
The Boston Meeting scheduled for September 22, 2001 has been
postponed. The following message was posted on the NIDS website.
--Elvei
Event Calendar
NIDS Presentation
Boston, Massachusetts
Due to the tragic events of September 11,
this meeting has been postponed.
Please check back for updated information soon.

Hi,
This has to do with what Dr. Goldberg discusses, neurotrophins,
neuropeptides, cytokines, chemokines, etc. In other words....NEUROIMMUNE.
This is the abstract with info below.
Cheryl
Toward a biology of autism: possible role of certain neuropeptides and
neurotrophins
Karin B. NelsonA knelson@...
Neuroepidemiology Branch, National Institute of Neurological Disorders and
Stroke, Building 10, Room 5S221, National Institutes of Health, Bethesda, MD
20892-1447, USA
A Tel.: +1-301-496-1714/594-9486; fax: +1-301-496-2358
Abstract
Autism is a behaviorally defined syndrome for which there is no known
biologic marker. Although autism is thought to be a disorder of brain
development, there have been few efforts to study early regulators of brain
development in this disorder. This paper describes a recent study of
neonatal blood of children with later-diagnosed autistic spectrum disorders,
comparing them with two groups of affected children, those with mental
retardation without autism, or with cerebral palsy, and unaffected control
children, using recycling immunoaffinity chromatography. We measured
concentrations of four neuropeptides and four neurotrophins, finding that
neonatal concentrations of the neuropeptides vasoactive intestinal peptide,
calcitonin gene-related peptide, and the neurotrophins brain derived
neurotrophic factor and neurotrophin 4/5 were higher in children in the
autistic spectrum, and in those with mental retardation without autism, than
in children with cerebral palsy or healthy control children. In 99% of
children with autism and 97% with mental retardation, levels of at least one
of these substances exceeded those of all control children. Concentrations
were similar in subgroups of the autistic spectrum (core syndrome with or
without mental retardation, other autistic spectrum disorders with or
without mental retardation), and in the presence or absence of a history of
regression. Two other neuropeptides and two neurotrophins were present in
similar concentrations in all groups examined. Thus overexpression of
certain neuropeptides and neurotrophins was observed in neonatal blood of
children with later diagnoses of autism or cognitive disability.
© 2001 Association for Research in Nervous and Mental Disease. Published by
Elsevier Science Ltd. All rights reserved.

This is what I wrote to quackwatch and this is what I got back !
Any info on the DAN (defeat Autism Now) protocol for Autism?
They want a lot of testing done are these real?
Any truth to their claims??? They are enlisting Doc's from all over
to follow their advice and treat kids...
Should I save my money or is this real?
Save your money. There's no evidence that nutritional measures have
any effect on autism.

Hey,
Has anyone out there gotten Dr. Goldberg to prescribe Effexor as an SSRI?
Trina

Wendy,
Very interesting. I wonder how he caught the connection between the
increase in Celexa and the increase in EOS. Smart guy. It makes sense
because when kids don't have a change in diet and the EOS is ONLY linked to
dietary allergies, WHY do they go up and down??
Sooner or later someone else will have the same reaction as Taylor. I
wonder if Kathy from New York has ever heard of Serotonin Syndrome? I know
that I have never seen it on this site and Goldberg never told me about it.
I don't want to get flamed off this site, but this information should be out
there..........
What a dreary day. Reminds me that winter is coming -- boo hoo. Next
summer you guys have to come over and jump in our pool. I am sure we will
be cured by then!!! I will always be the irrepressible optimist. Actually,
Meg is doing great talking at home, she just needs to do it in school!!!
Take care,
jill
P.S. Let me know what Taylor's EOS count is next time!

We have had a similar experience - are now in a second Celexa trial but on a
very gradual dosage stepping up process. The 20 mg tablet for Celexa is pink
color - in the first round my son's EOS went up, and again, after getting
them down low, they are on the up again co-inciding with the Celexa trials -
no dietary change. I suggested to Dr G last week that maybe the pink coating
is causing a reaction in some kids (like the blue color does on Valtrex). Dr
G recommended switching to the new 10 mg size (a beige color according to
the pharmacist) so I've ordered that and will start in a few days. Anybody
with any experince with this?
Robert

Trying medications in a haphazard manner would probably not be beneficial in
the long run. If you don't have a plan based upon lab work, history, and
physical how will you know what your son should take, how long, what the
expected results should be, how to interpret the blood work etc. Perhaps your
Doctor should contact Dr. Goldberg and get some guidance before you start
anything. PS having a positive HHV6 is not the only criteria for starting an
antiviral medication. Kathy NIDS-NNY

Sharon, The increase in sensory needs was one of the things we saw big time
with my son on Celexa. Unfortunely that was the beginning of a nasty
reaction to the medication. I must admit the SSRI's now scare me a bit. I
too believe in Dr G with all my heart but we,ve tried 3 different ssri's
with varying degress of non success. I'm not sure what's next. The anti
virals have been the godsend for my little guy. His blood work backs this
up. Good luck to you. I did also see the head pressure. Perhaps that is
due to the increase in blood flow.
Wendy

Hi:
I'm the mother of a 12 years old moderate functioning autistic son. Since his
diagnostic I have tried everything to help him (gFCF diet, Vitamins, Auditory
Training, Doman/Delacato therapies, Speech Therapy, OT, Son Rise Program,
Allergies therapy using provocation/neutralization and NAET,Yeast THerapy and so
on). A few months ago my father send me information regarding NIDS. I did part
of the blood workout and found that he was positive for HHV6. I was surprised
that his CD4, and others were normal.
At this moment I'm giving my son Vit C, Calcium/Mg, Glutamine, TMG, Biocidin
(for yeast and bacteria) and Omega 3. His diet consists of meat, veal chicken,
rice, potatoes and some vegetables. He is still a little hiper and has OC
behaviors (moving papers).
I'm planning with my local doctor (pediatrician/allergist) starting antivirals.
I'm thinking Valtrex since it doesn't contain lactose. My question: For a 12
yrs old 65 lbs boys, what is the recommended dosage? Is Famvir better even
though it has lactose? I'm subscribed to the NIDS chatroom and have read since
June all the mailings.
Please let me know. I will appreciate it.
PD I'm also thinking trying Kutapressin.
Thanks,
Julie Lopez
Mother of Jorge
San Juan, Puerto Rico
e-mail: jrive@...

I have a concern and I'm going to throw it out -
if you have any experience with the subject or articles
explaining why, please email me at sjsmith@...
since restarting famvir (antiviral) at a slightly higher dose
about 3 wks ago, my 6 yr old son's head pressing has
increased. I should say 'need for pressure' overall ....
This has been Jacob's 1st 'healthy' week in about a month.
We had Hand-foot-mouth during his first week at school
then a cold/URI the following week.
He's doing much better this week and is actually pretty alert
and bright eyed.
Dr G took Jacob off of famvir in late July, right before our trip to
Calif.
Blood tests were looking good. Dr G felt it was time to see if the
immune system would click in.
(p.s. Had the neurospect done while in Calif. The Xenon portion of the
test
was broken. But the other spect was done and results looked pretty
good. A few 'hot' areas.... but few low areas ...)
any ideas? is this the herpes at work in his brain ? making the host
uncomfortable ? I don't remember this happening when we initially
started
famvir last year.
Thanks!
doris
millersville MD

Doris,
Interesting.....we recently changed to zoloft and my son's sensory needs seem
to have increased as well. He wants to hug EVERYBODY (even gave Dr. G a
hug), which is okay, but he really seems to be craving that sensory pressure.
He really gives strong hugs and wants me to squeeze him too. I haven't seen
the head-pressure part of it though. I wonder why he is having this
reaction???
Sharon

**Michele

Here is another story on how smart our children really are.
Yesterday at school my son's class had to go to P.E. He did not want to and
started a screaming fit --- "NO PE, I want music." the aid said quietly no to
music but yes we have PE. Again "NO PE, art." The aid then got to our son's
ear and stated there will be no tantrums it will not get you what you want.
To that he looked at her and said with authority " I do at home". Obviously
he floored his aid, but did not get his way and will not get his way at home
either apparently!!! Just a great story to tell.
Marvina

Nancy this is fantastic - Andrew has such courage.!

This was started by the principal of our primary school here. She is not
only a tireless advocate for all of her students, she is a remarkable lady.
God bless America! I know I'll be holding my candle at 7:00 tomorrow night!
Traci

Hi everyone
It has been a while since I have posted anything on the list. But I
would like to share with you what is going on with our son and give some
hope to parents who have been struggling with their children, specially
the nonverbal ones.
As you know we were away for a month on vacation and when we got back we
had 5 days to be ready for school. Most of you know that I home school
my son who is very nonverbal. But this year the Lord provided us with a
school who will not only allow me to be his instructor but his shadow as
well. It is a private small Christian school and both principal and
teacher are wonderful people. His teacher has a multi-grade classroom
which include K5 - 2nd grade. Andrew is in first grade and the plan was
for me to teach him the lesson in a separate room then bring him in to
sit with 1st graders for the worksheet and slowly see how he does.
Well Andrew took us by surprise! His teacher from the beginning, the
first week, kept on teaching regardless of his stimming or his behavior.
The remaining 17 children had strict instruction not to look at Andrew
and not to say a word. With her effort and the children ignoring the
behavior Andrew realized that he did not have a choice; the only thing
he can do was sit and obey. I sat with him that first week, signing or
writing on a little board what is required of him. The following week
the teacher assigned Andrew to a reading group. Andrew can read silently
and answer questions accordingly. But he never had to read aloud to
other children. He realized that he was not reading as fast as the other
children were and did not want to do it. The teacher simply told him
that we will all stay in class and wait till he was done. Andrew put in
the effort and sounded out the letters and blends. They are choppy but
they are coming. The other five 1st graders are cheering him on.
The teacher saw in him a bright and an intelligent child and decided to
change her schedule to fit Andrew's schedule. So now Andrew (with mom)
are in the classroom from 8:00 - 1:45. He starts with reading, then
handwriting, free time, spelling, recess, math, lunch, recess, and
phonics. At home I do heritage or science, and Bible. He takes tests
like anybody else and has to turn in his homework like anyone else. We
leave school earlier because we go to speech or occupational therapy.
The other day I about fell out of my chair when she asked what kind of a
word is tomcat and he said very choppy but understood "co - m - poun -
d" I had not taught him that but he was listening.
We have our days and our ups and downs. The teacher understands that
Andrew's problem is a medical not a mental problem. She knows that he
wants the easy way out. He was and will still put her to the test. He
will misbehave and do whatever to be out of there but she is not going
to give in neither will I. I sit next to him, encourage him, repeat
instructions if I have too and I make sure he stays on track. We have
goals for him and if by the end of this semester he can sit in the class
for 25% of the time without mom I will be thrilled.
I am so thankful to God for this opportunity and for the improvement I
see in my son. I also thank Dr. G for his efforts and for seeing my son
for what he is. To all of you moms and dads who are putting in the
effort keep it up. Andrew is 8 and in 1st grade, a child who we were
told will never be able to do anything and is now in a regular
classroom. He may be 2 years behind his peers but who said he will not
catch up. One day he is just going to say it all.
The best for all and for your children
Mercy,
Nancy

Please read the bottom of this message !

Ellen,
Some of these behaviors are a very good sign. Unfortunately sometimes they
have to get worse before they get better. If it was me I might try to have
him in school part time and do some ABA at home the rest of the time. This
is where Dr. G and I part ways. Our kids need a good ABA program and that
is hard to find because there are people out there who are taking advantage
of the way we want to help our kids so much we would do anything. They
charge exorbinent fees and don't even do the ABA correctly.
The hard part is that the only one who is going to fix this kid is you. The
school has hundreds of special ed kids and even if they wanted to, they
don't have the resources to do the things our kind of kids need. You can't
expect the school to come up with the answers. I can't remember if I gave
you my phone number. If I did, call me otherwise e-mail me and I will send
it. I have some ideas of what might work.
Hang in there!!! He has been sick for a long time. You can't expect him to
get better over night. It took us years, but now Ryan is normal.
Marcia

Ellen,
I am happy and sad for you. Happy for the increased awareness your son has
and sad that the school system is so ready to boot him even though they have
seen these positive changes. We have been with Dr. G two and a half years
and have seen very good changes (we are still not there). Megan has had her
incidents (hitting a social worker, hitting a kid, biting a kid, running out
the doors of the school for recess when recess was supposed to be inside,
throwing tantrums in the schoolroom, running away from home three times),
but we have managed to get beyond them. My rule of thumb has been - does
the negative behavior outlast the positive behavior. When we went on
Kutapressin Meg ran away from home three times and once was brought back
home in the back of a police car. She had found a huge new world around her
and wanted to go to Toys R Us on her own! So, we drilled the safety lessons
in and that is no longer a problem. The positive outlasted the negative.
Sometimes we saw increased language, but also major increases in hyperness
or hostile emotional behavior (mostly tantrums). We stayed with the meds
until we were sure it wasn't anything else and then either dropped the dose
or switched meds. It is really hard when your child is making progress, to
see huge behavioral issues come with it. If the behavior does not taper
off, I don't think the meds are right for the child at that time. At school
when she would meltdown (when jumping from 8 mg. of Prozac to 10 mg. - too
much for her!) she would be removed from the classroom and placed in a
"quiet room". This is a small room located within the resource room of the
school with large pillows, covered tent, low lights and very quiet. (I must
also mention that there are 7 other autistic children mainstreamed in her
school. Besides the AI kids, there are lots of other kids who need help
that use this room.) Before booting your son, they MUST come up with a
behavior plan for when he acts up. If you want to use your home as the
quiet room, so be it, but once he is kicked out of school, only a major
miracle would get him back into regular ed. Point out that once he was
timed out and returned to school, he had a good day. As much as possible
let them know when med changes will occur and keep a detailed log of
behavior/current meds so as to track behavior. This is another way to show
them that this is a medical situation they are dealing with and NOT just a
behavior situation. Is there any way you can get your child listed under a
medical and an AI label?? Just a thought. Good luck. This is all I can
think of right now. Post more questions if you need to.
Jill

Hello listmates,
I need some hand-holding. My ASD, classic NIDS child who is 10 began seeing Dr.
G on June 4. We have done Greenspan and medical interventions for immune
disorders in the past, ie, IVIg, Diflucan, and depakote for his subclinical
seizure disorder that maintained us. The problem was that Dr's felt inclined to
discontinue his meds to "see what would happen" CRASH!!! Since seeing Dr. G,
he has been more medically stable than he has been for a long time.
His current meds: Diflucan, Valtrex (since Feb) Depakote (was on previously and
becomes violent when trying to wean) Claritin and newest, celexa. On paxil,
his OCD and sound sensitivities improved, but you couldn't get his attention.
When changed to 1/2 celexa, much improvement. School started, mainstreamed with
an aide in 4th grade, started off really well. In the midst of this really
positive change in him, he is also pushing, hitting, and wanting to do
everything himself-does NOT want help with anything! We went up to 3/4 alt with
1/2 tab of Celexa on Thursday. Friday was a fabulous day! Weekend, swam in
the river, jumped off the rope swing like the big boys were doing. Goes to
school today and refuses to do any work and hit his LD tutor. His aide brought
him home (we live across the street from the school) and we put him in time out,
then made him write a note to his LD tutor. This took 2 hours. This school has
no inclusion and would love to send him off to the mentally retarded class or
some severe behavior school. His team adores him and knows the child we all
know that is so capable.
He banged his head on the table at school and came home complaining that his
head hurt. We gave him an ibuprofen. Was his head hurting bfore
or after? Don't know. After spending 2 hrs in hell at home, he was ready to go
back to school and had a good afternoon.
Getting to the point, please give me some feedback as to what to tell the school
to do in this situation. Dr. G sent word after my SOS to go back to 1/2 celexa
and get back to him in a week.
Any tips you can give me to help would be invaluable. My husband has an appt.
with the principal Wednesday.
Marcia and others, I know you have said that the bad behaviour can be a good
sign. What do you think? He is doing some really great, new things,,but the
school will not tolerate any physical contact between students and between
teachers and students.
We are going to ask for some behavioral intervention, but this school system is
in the dark ages. We stay because my 12yo nt child is so deep rooted here. He
can walk out the door and have 10 boys his age available. It keeps him from
having to deal with so much.
Sorry to go on and on, but I need some advice.
Thanks,
Ellen

Dear Listers,
In light of the tragedies that have occurred in our nation this morning, the
NIDS Ca. Coaltion Support group meeting in Rohnert Park, CA, 7-9pm is
cancelled. More details will follow in the next few days as to a rescheduled
date.
May God bless and comfort those families directly effected by the tragedies.
Tina M. Hendrix
CureNIDS2000@...
Vice-President, California NIDS Coalition
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

Re; Prozac generis----Brand
Changes in response to generic
BE sure and document the difference and explain this to your doctor
because they can write letter to insurance company to try to get the
brand name covered. This has been done for a couple patients I know.
Lisa M- Virginia

I know this isn't the typical type message found on the board, but I
thought parents out there who are cutting out sugar and are looking
for reinforcers might be interested. I just made these the other day
and they are a no brainer.
Boil 1 cup of baby pear juice and add 4 little packages of gelatin
powder, then just pour the mix in a big glass dish. It sets almost
immediately and you can cut it in strips to make gummie worms, or use
cookie cutters to make different shapes.
Susan Mc

P.S. The gelatin I used was the clear, unflavoured 50 gram package.
The pear juice was heinz baby juice in the big bottle, they don't add
anything to it.

Hello Everyone,
I am on the East Coast in Philadelphia. Is there a NIDS Chapter on
the East Coast?
Ry, I responded to your email regarding the Conference in Boston.
But the messages was returned undeliverable. Can you email me
privately so I can send you my home address. At present, there will
be about 4-5 parents attending.
Elvei

This story seems to be an urban legend, which has been going
around for a few years, with local variants involving St. Louis,
Canada, Singapore, Sydney, and towns not mentioned--just WalMart.
There are several places on the web to learn about these stories--just
search under 'urban legends' in Google or another search engine.
I usually go to urbanlegends.com first.
http://www.urbanlegends.com/ulz/xperfume.html
Steve Kahler

Please read this and beware!!!!
In a message dated 09/06/2001 11:16:53 PM Eastern Daylight Time,
roy.glo@... writes:
**Michele

PLEASE READ THIS -- this is one of those internet haoxes. Please go to
hoax web sites an verify before sending things around the Internet. It
just gives these hoax writers more to laugh at when they see this stuff
spread around. This is quite an old hoax and a variation of several
other similar hoaxes.
Just trying to keep people's blood pressure down one hoax at a time ---
******************************************
On Fri, 7 Sep 2001 09:08:31 EDT isoaa@... writes:

On the 13th of October from 0900 to 1500 at Concordia Lutheran Church, 818
Arsenal St., Watertown, NY, the Northern New York Chapter of the NIDS
Coalition is sponsoring a workshop on "Ïmproving communications with the Late
Talking Child". This will be presented by Dr. James MacDonald. Professor
Emeritus, Ohio State University. Cost is $20.00 for parents and $25.00 for
others. Lunch is included. We got a grant to put this on so have been able to
make it very affordable for folks. Each participant will get a copy of Dr.
MacDonald's book on communication. If you are not familiar with his work I
would suggest looking at his website. We use his methods in our socialization
groups and are very pleased. www.jamesdmacdonald.com. Kathy NIDS-NNY

Lisa,
yes, generic is available. Make sure to document your child's reactions
to the medication as sometimes the fillers in the pill affect absorption
and response.

Lisa,
Yes, Prozac...the generic is available. I live in
Virginia and know of patients filling RX for it.
Lisa M.
Virginia
=====
I do not ask to walk smooth paths nor bear an easy load. I pray for strength and
fortitude to climb the rock strewn road.Give me such courage and I can scale the
hardest peaks alone, Transforming every stumbling block into a stepping
stone.Gale Brook Burket

would any of you out there buying Prozac tell me if the generic is available
yet? I know some part of their patent is set to expire soon. Also, on a
totally different subject does anyone have a tasty gluten free machine bread
mix to suggest?? thanks, Lisa

The Lisa Lewis recipe in her book Special Diets for Special kids is best -
it is the simplest and easiest to make and has least allergens. We use
Dari-Free rather than soy as a milk substitute as soy is an allergen for
Chris.
The Bette Hagman recipes are very tasty, but, being designed for Celiacs are
not as "clean" - ie there may be other hidden allergens in them!
RW

Mark your calendars for March 31-April 1, 2002
PLEASE SHARE THIS INFORMATION WITH ALL OF YOUR Frineds, Groups, and
VIEWERS:
Autism Awakening Presents:
The First Autism Telethon
Head Quarters in Cedar Rapids, Iowa
On March 31-April 1, 2002
The First Autism Telethon will air:
We Would Like FEAT, ASA, CAN, DAN, COSAC, Autism Caucus, UA, other
Autism Organizations, Autism Local Chapters, Autism Professionals,
Parents Autism Stories, Savants, and so much more to be involved.
WE would like each profession to be represented in the telethon and
how autism has touched their lives. We would like to have
descriptions of programs, research, and more.
If your organization is not on the list and would like to be
considered please contact the information below.
We are hoping to give each state 45 minutes or more.
This is an opportunity for us all to pick up our piece of the autism
puzzle
in one great effort to raise awareness and raise funds for autism.
We are also looking for parents with autism stories to be aired
during the telethon in each state.
Please contact Autism Awakening at the information located below.
If you are interested for more details: Watch our web site located at
www.AutismAwakening.com a link has already be place their for all
updated
information to be placed.
The money raise will go back into the autism community for new autism
programs, autism research, Autism research into the diet, vitamins,
and
minerals, and so much more.
Will your name be added to the list below?
Will you take your puzzle piece and stand up for autism?
One Of The Autism Expert Speakers who has taken their puzzle piece
and is
standing up are:
BERNARD RIMLAND Phd, Autism Research Institute
L.D. Wedewer Iowa Autism Ambassador
More information will be announced soon!
Mark you calendars and start getting your papers and sent for
consideration
to Autism Awakening
2002 Autism Telethon
1900 K Street S.W. Cedar Rapids, Iowa 52404
319-364-2687
1-866-PDD-IOWA
or Email: Autism Awakening@...
Tina M. Hendrix
CureNIDS2000@...
Vice-President, California NIDS Coalition
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

Debbie,
Dr. Goldberg has you do the NeuroSPECT at Harbor UCLA. They were a Blue
Cross Provider and insurance picked both of my daughters scans. I
requested a scan for my younger daughter because meds were not helping.
For my older daughter we were making another tri down to LA and I
requested with the techician at UCLA to reserve a spot for her. While
seeing Dr. Goldberg in his office he said that I should get a scan on
Rachel then I informed him that I already had it scheduled! The
technician at UCLA is Carmen and she preferential appointments for Dr.
Goldberg's patients. She is wonderful and good with children. The
hardest part about the scan is having to hold absolutely still. The
first part has to be done while awake as the child breathes in Xenon
gas. This lasts about 8 minutes. Then the dye is injected (very fast)
and you come back in one hour to have the second part of the test. This
is the part that the child can be sedated for. This part lasts about 20
minutes. My younger daughter could never complete the breathing portion
but was able to do the second part. We even returned to try the Xenon
again but she was still uncomfortable and UCLA did not bill us for this!
They either breath through a mask that has to have a good seal around
the nose or they can hold a tube in their mouth.
My daughter freaked at the mask but the second time it wasn't as bad but
still no success. We were still able to get good data by only being
able to complete one part of the test.
Lici

Debbie,
My daughters have always been on a PPO plan and never have Dr.
Goldberg's lab requests been questioned. If you can get it, a PPO plan
is the way to go.
Lici

Hello Again,
I have another question in regards to the neurospect. For those of
you on an indemnity plan (PPO), does the insurance pay for this if
Dr. G requests it? I believe I also read Dr. G post a response to a
parent that he does not always order this test, especially if all the
NIDS bloodwork, medical history, etc. points to NIDS...is this true?
Have most of you had the neurospect done? Is it painful for the
child?
Thanks for the responses!
Deb

Hello Everyone,
My son's primary doctor has worked with me to order almost all of the
initial NIDS bloodwork that Dr. G requires. However, now Dr. G is
requesting another series of follow-up bloodwork (such as the
comprehensive metabolic, SGOT/SGPT, lipid panel, etc). He requested
this follow up bloodwork be done 4 weeks from his recent visit with
him. In speaking with my sons' HMO doctor about this, she said that
the insurance (Cigna) is starting to question why he's having so many
bloodtests and the necessity for them. This means they may not pay
for future tests. It also concerns me that they asking questions
now, especially when he'll need monthly tests to monitor for liver
damage when he goes on an antifungal. Has anyone else run into this
problem with an HMO?
I have the potential opportunity to switch to an indemnity plan where
I can go to any doctor...would I have this same problem with the
insurance covering the bloodtests if I was on this type of program?
I really need some feedback on what the advantages would be if I was
on a PPO (indemnity plan) vs an HMO? Please help!!!
Thanks
Debbie

dvberrey: Would you elaborate on the medical group that rejected the
mandatory vaccine schedule? Why are they lobbying for free market rates for
medical fees---fairness to the patient population?
Kate

Dr. Goldberg has asked me to send his apologies to the list, as he will be
unable to participate in tonight's chat. However, he plans on being online for
next weeks chat, Tuesday, Sept. 11th.
Thanks,
Sandy

We have had good success with Celexa. Been using it for 1 1/2 years.
Charles

Unfortunately this physician group is not mainstream and this did not
get picked up in the press at the time it was released (Nov. 2000).
The group primarily lobbies for "free market" rates for medical
payments and changes to the Medicare reimbursement practices.
Instead, what gets picked up are stories like this one I saw tonight
on MSNBC's website: "Reassurance on child vaccines; study finds
benefits of MMR and DPT outweigh risks". Again.

What a wonderful outcome! This is all I have been asking for! I love the
paragraph about Hep B...this is the perfect example of the government
overstepping its bounds and blindly giving into the drug manufacturers.
Everyone should do yourself a favor-print out this article and forward it to
your school district and while you are at it, your local public health
department - they both could use the education...

Marcia,
I just wanted to tell you how much I appreciate all you comments and
advice to parents out there who are struggling. I only found out
about NIDS recently and it was your words that inspired me to jump
off the fence and book an appointment with Dr. Goldberg. The
appointment is a long way off but thanks to your comments and other
words of advice from parents out there who have responded to some of
my questions I feel my families future has gotten a whole lot
brighter! Have you ever considered writing your own book? I'd buy one.
Thanks again,
Susan Mc

We have had successful floortime playdates with our son (3.5 years,
PDD-NOS). But, as one of our therapists told us, it's like teaching
someone to play tennis. When they start, you want to have somebody that
can "hit the ball right to them." In other words, it's usually easier
(in our sons case anyway) to start with older children with well
developed social skills. Same age peers usually come after our son has
had some "practice" with an expert. We've had pre-teenagers (young
girls from our church who are very warm and attentive) play with our son
and do great with him. They don't have to have any experience in
therapy, much less floortime, they just need to be able to be patient
and persistent in trying to engage your child. You know, hit the ball
right to them. (Our son wasn't crazy about Disney World when we took
him either... too many people, too hot, too loud, too...)

To all-
Just thought I would post a note to her how your
children have faired taking Celexa. My son was first
put on Paxil, first liquid then pills, and it changed
my son into a terror!!! He became agressive, and did
not listen, had fits everywhere it was a nightmare for
my husband and I. I am now afraid that he will get
the same reaction ont he Celexa. Please letme know
good and bad about this new drug.
Thanks
Shelley
PS Please email me privately as to not clog the list..
=====
Shelley Bell

Dear Connie,
We had Susie Fosnot evaluate our son's progress several times in the years
we've been under Dr. Goldberg's care. In short, she's wonderful! No need to
worry -- her training is excellent and her insights are profound. Moreover,
she's seen more kids like ours than anyone else I know and that experience
enables her to hone in on the child's strengths and ongoing developmental
needs with a rare precision. Her reports are extremely thorough and help the
parent and any other therapist follow through on specific recommendations
for treatment.
Perhaps most important of all, she really CARES about children and wants
them to be their best. Our son really enjoyed his sessions with her and
still speaks so fondly of her. Yes, SPEAKS!
Additionally, she has been a valued asset to me as a parent. She encourages,
challenges, and provides helpful feedback. She has provided me with a window
to my child's future that few others have provided. I have found her
insights and feedback to be accurate and more "forward-looking" than other
speech therapists.
Due to several moves we've made over the years, our son has received therapy
from quite a few speech therapists in Texas, Florida, and Illinois. None of
them can hold a candle next to Susie Fosnot. I trust your experience will be
the same!
Best of luck,
Pat

Kristina,
My son is now twelve and recovered. He gets straight A's, has friends and
is socially appropriate. But it wasn't always that way.
Fortunately, I had my daughter first and because of that I knew what he was
suppose to be doing. He never gave me an indication one way or another that
he was ready for anything. When he was three and a half, I said I guess it
is time for toilet training and used the same methods I did with my
daughter. The difference was that she showed me she was ready, responded to
my excitement, and answered me. Although the same techniques worked, but he
gave me no indication one way or another that they did until he was trained.
One mistake I think parents make is that they stop talking to their kids and
interacting with them because they get no response. Believe me they are
hearing you even though there is no evidence that they care one way or
another about anything you say or do. In turn the parents stop interacting
because they think the child doesn't understand or can't. The hardest thing
I ever did was to keep talking to my child in a normal way when there was no
response.
To teach socialization, I would borrow other people's kids. Playing with my
son was not fun because at first the other kids got no response. So I made
my house the Kool-aid place. I had the best toys, and the best treats. We
even built a Gucci playhouse, got a trampoline, a Nintendo or anything else
that would be a kid attractor. Anything that would make these kids want to
come back because my son was not fun to play with. Their parents loved it
because it was free babysitting that they didn't have to reciprocate. I had
kids at my house at least three times a week. At first they came for a
short time and then longer.
In the beginning, I was the one who played with the other kids. I had to
facilitate every interaction with other kids. Fortunately our guests loved
the one on one attention and always wanted to come back to play with me even
though my son had bizarre behavior. It was especially hard to watch the
differences between my child and "normal" kids. It took quite some time
until I could get my son to join in and years until he could do it solo.
At first he just hid in the back of the house when anyone would come over.
We used ABA and those techniques to help me know how to get him to do things
that were hard for him. In the short turn, it would have been much easier
to let my son be autistic. Easier to let him wander the house plugging in
his portable radio over and over again in every outlet in the house. Easier
not to have the confrontations when I expected him to do something he didn't
want to do. I didn't want to watch him scream when he didn't know what to
do with other kids. But if I had given in to him; he never would have
learned the right way to behave.
I remember not wanting to get up and do this again, but what choice did I
have? I could have let him be the best little autistic boy he could be or
make him join up with the rest of the world. Thank god I didn't give up and
had more stubbornness than he did. Thank god for Dr. Goldberg and his wife,
Elyse.
Don't let your child be autistic and get someone to train you in ABA. It
won't work if you try to correct everything at once. Pick the one behavior
that drives you up the wall and systematically eliminate it using ABA.
Ignore the other bizarre behaviors. When that is accomplished, pick another
one. Catherine Mauice once told me to use what they love to reinforce
appropriate behavior. That was good advice.
Don't give up!!! With Dr. G and ABA, recovery is possible. Maybe not for
all kids, but how will you know if your child is one of the lucky ones
unless you try. It takes years and is the hardest thing you'll ever do, but
if you don't try you'll never know what might be possible for your child.
I thought my child would never be "normal". My motivator was to do
everything possible, so I wouldn't have guilt later. I had no idea my child
was getting better, even while I was working at it. The changes are so
gradual and take such a long time. I never would have seen my child in the
school play Annie flirting with Miss Hannigan if I had taken the short term
easier route. He never would have learned to talk to people in the grocery
store or have all his friends over to play. Please give your child a chance
at life.

Kristina,
You'll be amazed at what there is at Disneyland that will interest your
child.
On our last trip to LA, I took the plunge, risked the freeways and took my
son (5 1/2 at the time). I had never been myself either, and was amazed at
how he lead me from one thing to the next - and a great speech stimulus it
was too!
He loved the horse carousel - which he chose by pointing across saying
"white horses" and from there he could see the Dumbo ride and again pointed
saying "I want elephants". Toon town was a lot of fun and meeting Mickey and
Minnie, sitting in Mickey's car, and just being with lots of other childen
was fun for him.
He is now just starting to socialise with his little sister (3) - turn
taking games etc work well. He did a group ABA class for a year with 6 other
kids which helped here.
hope this helps,
Robert

Has anyone seen Susie Fosnot, a speech pathologist, in L.A.? Dr. G. is
recommending that we see her. Please email me privately regarding your
impressions. Thank you in advance!
Connie
craji@...

Dear Parents,
What have most of you found to be the greatest help remediating social
deficits in your children?? Many of you who talk of coming to LA to see Dr.
Goldberg talk about going to Disneyland as well. I can't imagine my little
guy enjoying that!!??!!
He is completely verbal and will socialize with my husband and I and other
close adults ie: grandparents, therapists, etc. but children?? Forget it!!
He is 3 1/2 and will be starting preschool with an aide next week! He is so
much more interested in mechanical things and "real things" rather than toys
and kids. Is ABA very helpful with social skills?? We have always done
"floortime" and find it extremely helpful for his loving warm attachment to
us and his excellent verbal skills but playdates using floortime techniques
are very difficult and unsuccessful.
Any help or advice is appreciated! Hope you all are having a relaxing
weekend!
Thanks,
Kristina

Enter your vote today! A new poll has been created for the
NIDS group:
The NIDS list receives daily postings from FEAT (sometimes from 2 to 4 a day).
They are reviewed for interest to our list-members. Of late, we have been
holding them and releasing them as a group over the week-end when our list is
usually not so active. In the interest of best serving our NIDS list-members, we
are posting a poll to determine the interest level of receiving specific FEAT
posts on our list. Do you want to receive . . .
o Daily FEAT postings posted each day on the NIDS list
o NO FEAT postings whatsoever: I'll subscribe to FEAT on my own
o Once-a-week "condensed" FEAT postings posted as a grouping just on week-ends
o Headlines of specific FEAT postings with a link to the FEAT site &/or FEAT
cited URLs posted on week-ends
o No Opinion on the matter
To vote, please visit the following web page:

Has anyone done an auditory processing program called PACE? Our local
provider of vision therapy offers it.
Kate

Michelle
I went to a bookstore and found The Zone. You can read about it at
www.drsears.com , I like the feingold diet myself, you can check them
out at www.feingold.org , they deal with salicylates, additives ,
artificial flavors and colors.

Hello Tina,
I will be in the Moreno Valley area. I will arrive there Thursday
night, 29Aug01. My friends name and phone number is:
Loretta Harris 909-778-9991 Maybe you can send me your phone number
and I can call you when I get to Calif. My email address is:
lvlnew@...

PLEASE SEND INFO ON THE NIDS RIBBONS

I am now taking orders for NIDS Ribbons. They are $5.00 ea. Please e-mail
me privately if you would like more info and I'll send you a photo of the
ribbon.
Thanx
Tina M. Hendrix
CureNIDS2000@...
Vice-President, California NIDS Coalition
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

Susan,
Where in Ontario do you live? I am trying to find a contact in Kingston.
Kathy NIDS-NNY

Kathy,
I'm in a place called Orangeville, it's about an hour north of
Toronto. I can get you the name of the president of that ASO Kingston
chapter if thats any help.

Hi Dawn,
Glad you can make it. How many are you coming with? Please e-mail me back with
your full name, and address and I will send you flyers on the lecture with
directions to the hotel. How many flyers would you like? Talk to you later,
Ry

I plan on attending. Maybe we could chat before then and meet there.
dawn

Hi, I'm new to NIDS and thank goodness I found you. We are very
excited to get going with Dr. G's protocal, unfortunately the
earliest we can see him is May 2002. I don't know what to do until
then. My son is 3.5, we are starting ABA in Sept. and he has been on
a GFCF diet since January. We live in Ontario, can anyone give us
advice on what to do? Thanks.
Susan

...My son is a six year old boy with autism. Most people expect that David
will never hold a job and will never command a personal income. These things
about David appear obvious to anyone who knows him and the nature of his
disability. What wasn't obvious to me is that my six year old boy also has a
badly tarnished credit report, and that his autism diagnosis made him the
perfect target for identity theft...(article excerpt, copyright August 2001,
Liane Gentry Skye)
~
Friends,
Please forward this to any parent you know who has a disabled child.
Please make sure you run your disabled child's credit report through Equifax
services every six months or so.
Why? Our children are targets whose social security numbers are passed back
and forth between agencies with little protection as to the child's
identifying information. Your child's IEP most likely contains his/her
social security number and all of the identifying information someone would
need to establish credit in your child's name.
Anyone who lifts one of these records which are readily passed back and forth
by email and fax machines can obtain your child's personal "confidential"
information in a matter of seconds.
Clean identities are bartered for big bucks. Our children are often seen as
ones who are unlikely to ever use their financial identities. This makes
them "golden" opportunities for credit fraud and identity theft.
Also, if your child receives medicaid services, request an itemized record of
all medicaid funds approved every six months. Medicaid fraud is rampant, and
again, because detailed service records are not always shared with parents,
they are natural targets for fraud.
As an added precaution, inform your school, medicaid and social services
offices in writing via certified mail that any records requested or sent on
your child's behalf MUST have all identifying information other than their
name whited out. Why will this help? Anyone requesting these records should
already have this information, and passing it back and forth electronically
puts your child at further risk for identity invasion.
We live in a sick world, and our children have enough difficulties in their
lives. Please take action to protect your child today, before problems
arise. I wish I had.
Traci
(aka Liane Gentry Skye)
starmuser@...
I

My name is Linda Smith. I attended Dr. Goldberg's Conference in Long Beach
California. I met a very nice lady who said that she lives in Mission Viejo
which is South Orange County. I wonder if she or other parents of patients
of Dr. Goldberg participate in this discussion group. It would be nice to
communicate with those who live near me.
Linda

Hear , hear! (for ABA with older children) We're still doing it with my 16
year old--very successfully. And Marcia, you are so right about what you
said about people who don't do it right, and then think the whole methodology
doesn't work. This is true of people who supposedly try the dietary
restrictions, but never truly remove the offensive foods (never stop
"cheating")
I also have a friend who is still doing a home program with her 21 year
old--also a patient of Dr. G's as well---he is doing fantastic
Kate

Dear Marcia
I have walked in your shoes and have met all the doctors that looked at my son
as an autistic child with mental retardation. I have heard it all. Andrew will
never be able to go to school, start from now looking for a special school and a
home for him when he is an adult. I have heard it all. After the initial shock
and the grief I turned to my Lord for faith and stamina to get up every day and
fight for my son. ABA went for ever and ever. It was hard to work with the
consultant and the therapists as none of them looked at Andrew as an intelligent
child except for one. She was wonderful and stayed with me for 4 years. Andrew
was totally and still is non-verbal but with prayers, faith and hope we dug
through autism.
I remember the first time I saw Dr. G. I was not sure how it all worked, all I
knew that this man had a scientific theory that fits NIDS children. I waited for
him outside for 30 minutes with a friend of mine. I stopped him and asked him a
few questions. His answers made sense to me. He was the first professional to
tell me my child has an illness but other than that he is like any other child.
He gave me a sense of direction. Let's do this and then we will do that. He has
a plan unlike other professionals, see you in a year, keep us posted.
Andrew is still non-verbal but he is 8 years old going to a regular 1st grade
classroom. He is there every day from 8 - 2 with mom. I go with him to
facilitate learning with some signing. He is paying attention to the teacher and
is surprising all of us on how much he is learning from the classroom. The
children have been wonderful to him. They share with him, help him get in line,
kick the ball, play cowboys and indians... They showed an interest in learning
how to sign and I started teaching the class the basics. They want to find a way
to communicate with him and he is paying attention to them. Andrew has a long
way to go socially but we give God the glory for what he has done, for putting
Dr.
Goldberg in our path. I know that Andrew could not have improved and started to
learn if it had not been for the medical intervention.
We need the new meds for NIDS and like other parents we are trying to help
spread the word. My son has a long way to go but now as his diagnosis changed
from autism to communication disorder we hope that other parents won't give up
on their children.
Mercy
Nancy

my son was little, I started with Sidney Baker who is the primary author of