Nids

Dear Listmates,
I am trying to ascertain whether "Wellbutin" is available in Australia - could
someone please tell me it's drug name?
Many thakns in advance
Annabel Stuckey

Hopewell Associates Inc. presents
Essential Biomedical Approaches
to the Treatment of
Autistic Spectrum Disorders
August 31, 1999
The Coonamessett Inn
Falmouth, Massachusetts
National experts on the etiology, assessment, and treatment of Autism and
related disorders present the complex interplay of immunologic,
gastrointestinal, endocrine, and neurologic factors that contribute to the
development of Autism. The role of vaccines, gastrointestinal overgrowth of
yeast, oral antibiotics, inborn errors of metabolism, and other potentially
causative issues will be discussed, Dietary interventions, nutritional
supplementation, the use of antifungal medications and Secretin will be
thoroughly reviewed.
Featured speakers will include Maureen McDonnell and Jane Barese who are
pioneers and active expert practitioners in the use of diet, nutritional
supplementation and antifungal interventions.
Panelists will include Victoria Beck, the mother of a child with Autism who
discovered the startling connection between Autism and Secretin; Paul Hart
MD, a pediatrician who is actively utilizing Secretin in his practice; Pamela
Ferro RN, mother of a child with Autism, utilizing biomedical approaches to
autism in her practice at Hopewell associates, Ricci Hedequist, mother of an
autistic child, founder of SOAR (Support & Outreach for Autism Recovery) and
moderator of the email list secretin-discussion@egroups.com; as well as the
featured speakers, and other guests.
CIRCLE THIS DATE ON YOUR CALENDAR AND PLAN TO ATTEND!
Registration fee of $100 includes tuition, materials, continental breakfast,
lunch, and snack.
Lodging is available nearby for those who may wish to stay in Falmouth.
Brochure is now available. A limited amount of scholarships are
available.
You may register early by calling
Pam Ferro or Carol Wester at 508-758-3200
Note: The program meets the requirements of the Massachusetts Board of
Registration in Nursing for 7.0 contact hours. Nurses may review program
objectives prior to the conference by calling HAI at 508-758-3200.

I'd like to thank EVERYONE who contributed to the recent NIDS Conference in
Bethesda, MD. You did an exceptional job in informing and energizing the diverse
group that attended. I know that I left the meeting reinforced and renewed in
the treatments/interventions we have chosen for our son. The conference was well
worth the time and money spent!
Equally important however was the symbolic value of this meeting. It represented
an attempt to nurture and forge together a 'community' of interested
professionals and parents who collectively have the opportunity to pierce the
vast darkness of conventional medical, therapeutic and educational wisdom with
valid, scientific proof that NIDS is a treatable, changeable DISEASE. I not only
believe this to be true, I witness it daily watching our son grow and develop
beyond all the previous (and well-intentioned) professional guidance we were
given when he was first diagnosed.
Today we are hopeful and optimistic that the progress our son has made not only
will continue but will be shared by many others who dare to challenge
conventional 'professional' knowledge and expectations for our children.
Thank you Dr. Goldberg for your vision of excellence and your steadfast
conviction to prove that our children can change/heal and regain a childhood
that was lost to both themselves and their families.
Sincerely,
Pat Koltun
Crystal Lake, Illinois

Sarah,
I believe that both video and audio tapes will be available. It will
probably take a few days for the production to be completed. As soon
as there is info on availablilty and price, I will be sure that it is
posted here.
Sandy

Conference was great, even important! Profoundly so.
I suggest the video instead of the tapes because so much good
information was presented via slides, and both the speakers and the
various slides were video recorded. Thus, I assume a sampling of
each speaker's every slide (or nearly so) will be included in the
final video.
Teresa

(I had to send this out - I'm still on
that emotional high from today.
I'm pretty sure it's that and not the trip
home a-r-o-u-n-d the Wash DC beltway!)
I wanted to send a thank you out
to Pat, Mary, Dr Goldberg and all the wonderful
speakers and organizers for a *great* NIDS conference!
Whow! what alot of information to digest in
2 days ....
I thought all the presentations were well prepared
(if not dry in a few places ...).
I know I wasn't the only one pulling out a tissue
when Dr Goldberg showed the 'before' and 'after'
videos today ..... Too close to home for me ...
A video was being made of the conference and audio
tapes are available. If you weren't able to attend
I would highly recommend purchasing one or the other.
Doris Smith
Maryland
Ps Are the two mothers from New York on this list ?
One has a son named Matthew ? I neglected to get your
names and addresses. I would like to remain in
contact.

Hallo, I'm Laura from Italy.
A friend of mine told me about a doctor of Chiropractic (he has studied in the
U.S.A.)near my city, who makes blood tests to detect what foods are toxic. My
friend has had his blood tested because of some problems and he is on a diet and
feels much better (so he says).
I think it could be useful for my autistic son as well. It is not a normal test
to allergies. It detects the toxicity of some foods.
Do you think such test could be reliable?
Thank you
Laura

Hi everyone,
Could ricci or anyone else please give me any information they
would have on this? I have heard that secretin is like a "large pecid
ac. Is whats in secretin also in the pecid? And whats in the pecid that
is doing the same thing for some of the kids like the secretin is doing?
Thanks in advance!!!!!
Lois (mom to JJ bug)

Dear Teresa,
Your reference #1 is interesting to me because Celeste has told me that her
stomach feels better if she lies down and curls up a little, because
stretching it out makes it hurt worse. She also had an ear infection during
May.
Kathryn

EBV has a range of potential effects, sometimes neurologic, sometimes
appearing as regressions.
In perusing the thorough immune panels of autism-spectrum children
(n still fewer than 15), a goodly proportion have had signs of
chronic active infection with EBV; occasionally, co-infections are
indicated.
A webpage describing EBV in two children and offering citations
about possible treatments is now available.
The page includes some information about HHV6, CMV, and Bell's
Palsy (thereby touching mildly upon HSV and varicella).
http://www.jorsm.com/~binstock/ebv-case.htm
I've set my autism-list subscription to NoMail until after the NIDS
conference, so anyone wishing to write me, do so via
<aspergerian@...

Recently, I posted citations documenting that Helicobacter pylori is a common
cause of abdominal pain. Another possible cause of gut-related pain is
cytomegalovirus (1), which perhaps is all the more significant in a subgroup
of autism-spectrum because CMV can be a participant in virus-related otitis,
occasionally co-localizing with herpes simplex virus (2-4), which is known to
be capable of inducing so many of the traits seen in LKS and other
autism-spectrum kids (5).
1. Giladi M, Lembo A, Johnson BL Jr. Postural epigastric pain: a unique
symptom
of primary cytomegalovirus gastritis? Infection 1998 Jul-Aug;26(4):234-5.
Div. of Infectious Diseases, UCLA School of Medicine, USA.
ab: Cytomegalovirus (CMV) gastritis has been reported in transplant patients.
Symptoms are considered nonspecific, and gastroscopy with biopsy is usually
performed to establish the diagnosis. Three patients are described here 1 to 3
months after solid organ transplantation, with primary CMV gastritis,
confirmed
by gastroscopy, histopathologic examination and cultures. The clinical
presentation in all three cases was sharp epigastric pain that decreased in a
supine position, increased while sitting and further increased when standing
or
walking. The epigastric pain completely resolved after treatment with
ganciclovir. To the best of our knowledge, such postural epigastric pain has
not
been described as a specific symptom in any other clinical entity and may be a
unique sign of primary CMV gastritis.
2. Chonmaitree T et al. Presence of cytomegalovirus and herpes simplex virus
in
middle ear fluids from children with acute otitis media. Clin Infect Dis 1992
Oct;15(4):650-3
Department of Pediatrics, University of Texas Medical
Branch, Galveston 77550.
ab: Twenty-seven (10%) of 271 infants and children with acute otitis media
(AOM)
were found to be [peripherally] infected with cytomegalovirus (CMV) or herpes
simplex virus type 1 (HSV). CMV or HSV, alone or in combination with bacteria
or other viruses, was isolated from the middle ear fluid (MEF) of 10 patients.
In three cases, CMV alone was isolated from the MEF, and in one case, HSV
alone
was isolated. One of the CMV cases involved an acute primary or reactivation
of
CMV infection, with CMV-bacterial otitis and conjunctivitis as major
manifestations. One patient with AOM and stomatitis had purulent otitis
associated with the presence of HSV in MEF, with no other bacterial or viral
pathogens noted in MEF or nasal wash specimens. While most patients with CMV
infection were probably asymptomatic excreters at the time of development of
AOM, CMV did enter the middle ear. The presence of CMV in MEF was prolonged,
and
the patients continued to have clinical signs of otitis despite negative
bacterial cultures. Among patients with bacterial otitis, a higher proportion
of those who had CMV found only in nasal wash specimens had persistent
bacteria
in MEF, compared with those who were concurrently infected with other viruses
(57% vs. 19%; P less than .04). This report is the first to suggest an
etiologic
role for CMV and HSV in AOM.
3. Chonmaitree T et al. Effect of viral respiratory tract infection on outcome
of acute otitis media. J Pediatr 1992 Jun;120(6):856-62
ab: We prospectively studied 271 infants and children (2 months to 7
years
of age) with acute otitis media (AOM) for viral and bacterial causes, outcome
at the end of therapy, and frequency of recurrence within 1 month.
Comprehensive
virologic methods, including viral antigen detection, cell culture, and
serologic studies, were used to diagnose viral infection of the respiratory
tract, middle ear, or both. Evidence of viral infection was found in 46%
(124/271) of patients with AOM. Sixty-six patients (24%) had virus or viral
antigen in the middle ear fluid; 50 of these patients (76%) also had bacteria
in middle ear fluid, and 16 (24%) had virus alone. More patients with AOM and
combined bacterial and viral infection (51%) had persistent otitis (3 to 12
days
after institution of antibiotic treatment), compared with those with only
bacterial otitis (35%; p = 0.05) or patients with only viral infection (19%; p
less than 0.01). Of patients with only viral infection, 4 of 10 with virus in
middle ear fluid had persistent otitis, compared with none of 11 patients who
had virus only in nasal wash specimens or whose viral infection was diagnosed
only by serologic studies. Our data suggest that viruses interact with
bacteria
and that concurrent viral infection can significantly worsen the clinical
course
of bacterial AOM. The presence of virus in middle ear fluid may contribute to
the pathogenesis and outcome of bacterial AOM. The mechanism of these
interactions deserve further investigation.
4. Chonmaitree T. Viral otitis media. Pediatr Ann 1990 Sep;19(9):522, 524-5,
527, passim.
5. http://www.jorsm.com/~binstock/lks-hsv.htm

Hi Teresa. Could you please repeat the address of your webpages and describe
what can be found on them? I tried to "go" there last night but could not
get through. I am also looking forward to the conference this weekend and
hope to see you there.
Margie Knight

A new webpage delineates in-depth analysis of an autism-spectrum child's
lab-test data. The first several pages of the webpage contain the
conclusion and rationale the emerged from the data. The subsequent pages
are primarily references with abstracts so as to support the analysis and
to give Jonty's parents and physicians an overview of what his immune-
related lab data may signify.
http://www.jorsm.com/~binstock/jonty.htm
Sincerely,
Teresa
Researcher in Developmental and Behavioral Neuroanatomy

There is an excellent book on vaccines for anyone interested in being educated
instead of swayed. It is called "The Vaccine Guide - Making an Informed Choice."
The author is Randall Neustaedter. It was printed by North Atlantic Books in
Berkeley, CA.

It is such a shame that you had such a bad experience with "Lovaas". I hate
the way the term is used so loosely. We have had Dr. Lovaas' team consult at
our home on the east coast for 2.5 years. We are absolutely thrilled with
them. They have rules about never raising their voice, always varying the
learning setting (parks, outside, every room of the house, preschool etc. )
keeping therapy fun and very motivating. We would spend hours as a team
coming up with new reinforcers, fun activities, and ways to make learning a
great time. My son is 5 now and age appropriate (or even ahead) in many
areas. We are really working on the social/playdate aspect in anticipation
of school in the fall. We have also been patients of Dr. Goldberg for the
same amount of time. All children are different and all "therapists" (and I
use the term loosely) are different. We must all be on the lookout for
behaviors from anybody that does not match our personal and family style.
Also, we must find programs that progress and evolve as our children do. Dr.
Lovaas' group has done that and more. They have been a fabulous influence on
our whole family and especially my little boy. He talks a mile a minute and
has been talking since 6 weeks after we started their intensive program.
Again, I am sorry that it did not work out for you and your family. Dr.
Lovaas' California program has been a lifesaver for us. I now know why Dr.
Lovaas tries to guard his name with such vehemence. There are so many
people/institutions swearing they are him and clearly they just aren't.
(replication sites or not) Refering to an earlier post, maybe I need to be
deprogrammed as well. But if this is the bad times--bring them on.
We are in such a better situation than when we began our program. Good luck
to all.

My E-mail address is evansc@...

Dear Dr. Goldberg:
I sent an E-mail to your "office" address several days ago, and I hope you
received it. Having since found your address in Tarzana, I mailed the letter
and Website information to you yesterday.
I've been in recent E-mail contact with Teresa Binstock regarding possibe HHV6
and other herpes viral infections my daughter may have, causing or along with
probable CFIDS. Considering her continued recurrent rash since April, and
spreading pain in her stomach, I will ask our family doctor tomorrow to do a
panel for the herpes class viruses. Based on the results of that blood test, I
will ask him to prescribe ganciclovir or foscarnet.
PLEASE reply by 2:30 tomorrow if you have time at all, since I do not want to
request medication for her that may not help. I have requested that the local
pediatrician refer our daughter to you as an expert in CFIDS, but our referral
from family physician to that pediatrician has not been completed yet and our
appointment with pediatrician is not until the 16th. Our daughter is very ill,
and I feel we need to take SOME steps before she sees you if it is to take as
long as I forsee it will.
Please advise.
Yours Truly
Kathryn Evans

Liz,
Thanks for forwarding the article on Lyme Disease and the Spect Scan. It is
interesting that Dr. Goldberg's work also used NeuroSpect Scan and saw
consistent hypoperfusion (sp?) in the temporal lobe area. The NIDS board
feels it may point to viral infections since certain viruses are known to
migrate to certain areas of the brain. It results in reduced blood flow in
the temporal lobe areas. Treatment medically as a disease is the approach
used. The conference in Bethesda, Maryland that was discussed earlier being
held June 12th and 13th will address these findings. Let anyone know who may
benefit or has medical/pharmaceutical/research connections. To register,
call MAT: Medicine for Autism Today (804) 965-0332 or (888) 5640-4999 or
email: jpweaver@...

Lois:
Response? Try form letter to any and all communication received by them.
It's almost insulting it's so generic! Thanks for the update :-)).
Missy

WASHINGTON (AP) - Injections of neural stem cells, a so-called master
cell that can mature into any type of brain tissue, may be able to
restore neurons killed by Alzheimer's and other diseases that affect
the whole brain, laboratory studies with mice suggest. Dr. Evan Y.
Snyder of Children's Hospital and Harvard Medical School in Boston
said the laboratory study shows that the neural stem cells will
convert themselves into whatever type of cell the ailing brain needs,
restoring functions that have been lost to disease, injury or birth
defect. Snyder cautioned it will take at least another five years of
study before neural stem cell transplants can be tried in humans. See
http://www.infobeat.com/stories/cgi/story.cgi?id=2559838609-0e6

Hi, Lois! Missy, Princess Shelby's Mommy, here. I just wanted you to know
that I'm not ignoring your NIDS post about pepcid--I just don't have an
answer. Why are you going to give JJ the pepcid (just very curious!).
Best wishes!
Missy

Hi!
I wrote to womans world and this is what they sent me. Thanks Lois (mom
to JJ bug)

Our three year old autistic little girl is showing an increasing lot of
biting. She is biting persons (including herself) as well as objects,
especially when she is upset which seems to be the case more often then
before. She had a medical check up as well a dental one. Everything seemed
to be normal. She is on a sensory stimulating program which includes some
exercises against biting, but nothing helps. Does anyone have any
suggestions to help us ? Thank you.
Josi.

Lois,
I think you should post the address for correspondence to Woman's World
Magazine so that those of us that know immunizations to be a factor in our
child's autism can write and set Dr. Greenberg and the Woman's World readers
straight.
Ricci
<< Hi all,
Well....... I was reading my womans world magazine when I came the
the house call section and someone wrote this: Q- So far, my one year
old daughter, Jenny, has had several vaccinations without any problem.
but now I'am afraid to let her have her next scheduled shots because I
heard that vacciniations could cause autism! Is that true? A- No.
Recently,a small British study seemed to suggest a link between the
measles-mumps-rubella vaccination and autism, but the evidence does not
support that conclusion. By coincidence, the first sympton of autism- a
disorder in which a young child withdraws into her own world- often
appear before age three, the very same years when children get bulk of
their shots, so its all to easy to make a false association. Its
understandable that your worried, but please don't skip your daughters
shots- vaccines are safe, effective and essential to her health.
signed- Pediatrician David Greenberg, M.D. diector of the vaccine
Research center, Childrens Hospital, Pittsburgh. Well...... What does
everyone think?????Lois, (mom to JJ bug)

Where are the studies that conclude vaccines are safe in the long run? The
only MMR study that I know of is that kids were followed for 3 weeks after
the shot. If anyone on this list can provide references to vaccine safety
studies (preferably independent studies) I would be very interested in
reading them.
My conclusion so far, after trying to find research studies on vaccines, is
that there is a general presumption that the shots are safe but I have not
found hard data to support that. There is different amount of information on
different vaccines and I found the least info on MMR.
I am willing to be corrected but not by opinions. Show me the studies!
Sanjay tikku
Stikku@...

Hi all,
Well....... I was reading my womans world magazine when I came the
the house call section and someone wrote this: Q- So far, my one year
old daughter, Jenny, has had several vaccinations without any problem.
but now I'am afraid to let her have her next scheduled shots because I
heard that vacciniations could cause autism! Is that true? A- No.
Recently,a small British study seemed to suggest a link between the
measles-mumps-rubella vaccination and autism, but the evidence does not
support that conclusion. By coincidence, the first sympton of autism- a
disorder in which a young child withdraws into her own world- often
appear before age three, the very same years when children get bulk of
their shots, so its all to easy to make a false association. Its
understandable that your worried, but please don't skip your daughters
shots- vaccines are safe, effective and essential to her health.
signed- Pediatrician David Greenberg, M.D. diector of the vaccine
Research center, Childrens Hospital, Pittsburgh. Well...... What does
everyone think?????Lois, (mom to JJ bug)

Would respond with warning that unless a plan / plans like this are adopted
on mass by "organized" medicine or a medical specialty group, sadly, it is
doubtful the information would be accessible, in that needed "crisis."
Eventually, some technology like this will probably become standardized.
Good luck,
MJG

Hello everyone,
I posted this before but did not get any replys sooooo I'am asking
again. I want to try pepcid ac on JJ but don't know the right dosage and
how long I can try it. JJ is 11 years old and about 70 pounds. And
replys will be apprchated. Thanks!!!!!!!!
Lois (mom to JJ bug)

dear All,
as you know, i am a manager of 'autinform'@egroups.com'
....thousands of messages went missing tonight after I forwarded a post
entitled' Spect-Scan Identifies Autism'..interesting post ,re: Neuro-Spect
scan identifying Lyme disease/autism etc....I have the original document on
disk and forwarded to friends.....it is well worth a read.....all the best
(polly paranoia?!)....Liz.

.....this was forwarded to me...remarkable!!!! (scroll down)

FYI and slightly off-topic~
Has anybody heard of this service? This seems to go in the lines of
medic-alert, but with the information built into a card instead of having to
access the data-base of a central computer. Treatments and medications would
be imbedded right into the card, as well as any disabilities. (This was sent
to my e-mail directly).

Lovaas is a form of ABA, but not all ABA is Lovaas.
Sandy
On 5 Jun 99 CWither43@... (CWither43@... <NIDS@onelist.com

Hallo, I'm Laura from Italy.
Thank you for the link you sent about immune impairments in autistic children.
It's very interesting.
Can anyone tell me where Dr. Luigina Romani works? Does she work also in Italy?
Is it possible to contact her?
I also would like to know the best place in Italy (if there is one) to have
immune tests done and know some physician who follow this research.
Thank you alot
Laura
lombardi@...

To subscribe :
Send empty e-mail to
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Will someone explain the difference in ABA and Lovaas?

....FACTS 1. The '87 Lovaas study used children aged 2 yrs,mean IQ 60 (mental
retardation IQ=70)
2. '47% recovery'= 9 of 19 children 'recovered enough' to
ENTER mainstream nursery'
3. Home-based/workshop models=no data/study back-up for
ratings other than Lovaas 'guessing' 2-20 %...(.check conferece data)
4.ABA is NOT 'Lovaas' ( the latter has various
'curriculums')
5. Parents are entirely responsible for implementing a
program such as this.
ABA is God in comparison to Lovaas. liz.

Teresa, what is the web address of the gut group. I reviewed what Dr. Kane
wrote but a couple things were contradictory relating to sphingolin (possibly
due to typos) and I think I might like to get some clarification by posting to
the gut group list.
Thanks,
Jeff

Hi everyone,
Well... I'am going to try JJ on the pepcid. I need to know the right
dosage. He's 11 years old and weights about 70 pounds. Also how long can
I try it? Thanks to anybody that can help me.
Lois (mom to JJ bug)

Message: 1 Date: 3 Jun 1999 23:57:03 -0000 From: krzy_wbt@xxxxxxx.xxx
Subject: From the Autism Message Board
Posted by Marcia on June 03, 1999 at 16:45:40:
Marcia Hinds 5201 Windsor Avenue Edina, MN 55436 (612) 925-9803
Fax (612) 925-9467=============================================================
Dear Friends,
I am writing to let you know about a conference I will be attending on June 12th
and 13th in Bethesda, Maryland. I hope you will join me and spread the word to
others about this important event.
Before medical treatment and early intensive behavioral therapy, Ryan (my son)
was content to wander the house all day long plugging in and out his portable
radio in all the electric outlets.
Fortunately now, Ryan is just a regular kid in a regular fourth grade classroom
with no assistance. On his last report card he brought home straight As. But
more importantly, Ryan now is happy, has friends and succeeds socially. For
someone who had to be taught almost every social skill, he is now extremely well
liked by his peers. I have to take this opportunity to brag that my kid was just
elected vice president of his class. He ran against six other students and his
teacher told me more than half the class voted for him.
My sons recovery is directly attributable to his medical treatment by Dr.
Michael Goldberg. Dr. Goldberg is a pediatrician in California who specializes
in autism, ADHD, and immunology. He believes that autism is caused in part by a
malfunctioning immune system. Dr. Goldberg used medical interventions to treat
my son. He addressed the common disease process children with autism share, so
it was possible for my son to recover.
Dr. Goldberg is now working in collaboration with MAT: Medicine for Autism Today
and The Medical Society of the State of New York to present a conference in
Bethesda, Maryland. I have enclosed a copy of the brochure for your information.
(available at www.nids.net )
This conference is special because the speakers (with the exception of one) are
all medical researchers and doctors. They have come together to present their
latest research findings regarding Neuro Immune Dysfunction Syndromes (NIDS).
The high caliber of this endeavor is evidenced by the fact that the Medical
Society of the State of New York has accredited this conference to provide
continuing medical education for physicians.
I know this conference will help many families that are afflicted with
Autism, ADHD and Chronic Fatigue. I hope you will read the enclosed
brochure and share it with doctors, parents, and professionals in the
field. Please feel free to make copies and distribute it to anyone you
think it might help. If you need additional copies of the brochure, please
contact Pat Weaver at telephone number (888) 540-4949 or at Email:
jpweaver@.... Registration for the conference is also available at
www.mat.org or www.nids.net
I hope to see you there. If you are unable to attend, there will be audio and
videotapes available.
If you want to find out more about Dr. Goldberg and his work you can contact him
through:
MAT: Medicine for Autism Today P. O. Box 5938 Glen Allen, VA 23058-5938
Phone # (804) 965-0332 OrDr. Michael Goldberg5620 Wilbur Avenue, Suite#318
Tarzana, CA 91356Phone # (818) 343-1010
MAT along with The Medical Society of New York and Dr. Goldberg are working to
give our children a future. There are kids not getting better every day. I hope
you help make this a reality by spreading the word about this conference.
Thank you,Marcia

A number of parents have reported that their autism-spectrum
child's immune panel includes atypically elevated HHV6 antibodies.
What might that mean for the child, for his or her parents, and for
the child's physicians?
In answer to that question, an HHV6 resource webpage has been
prepared. It is long (appx 65k), and probably ought not be printed
unless your child has the atypically elevated anti-HHV6 antibodies.
Other parents may wish to print the first 4 pages because they
contain an initial discussion of immune impairments in autism-
spectrum children as well as an explanation of important points
derived from the citations whose abstracts provide much of the
webpage's subsequent information. New HHV6 page:
http://www.jorsm.com/~binstock/hhv6.htm
This announcement may be reposted to other lists. If someone wants
to discuss a point mentioned in the page and do so on the autism-
list or elsewhere, that's fine with me. Please cc me if such a
comment or discussin is not posted into the autism-list. Thnx.
Teresa

I thought this was interesting and wanted to share it with you all.

Thanks !! MB

Looking at this article carefully, I wonder why we vaccinate boys with
Rubella and girls with mumps vaccines. It shouldn't be that hard to sort it
out. Just an inconvenience?

(publically posted on Gut Group)

Teresa:
I'm just starting to investigate the correllation between foods/leaky
gut and autism behaviors. What's gutgroup? Can you post it's address?
Thanks :-)
Missy

Hopewell Associates
presents
Essential Biomedical Approaches
to the Treatment of
Autistic Spectrum Disorders
August 31, 1999
The Coonamessett Inn
Falmouth
National experts on the etiology, assessment, and treatment of Autism and
related disorders present the complex interplay of immunologic,
gastrointestinal, endocrine, and neurologic factors that contribute to the
development of Autism. The role of vaccines, gastrointestinal overgrowth of
yeast, oral antibiotics, inborn errors of metabolism, and other potentially
causative issues will be discussed, Dietary interventions, nutritional
supplementation, the use of antifungal medications and Secretin will be
thoroughly reviewed.
Featured speakers will include Maureen McDonnell and Jane Barese who are
pioneers and active expert practitioners in the use of diet, nutritional
supplementation and antifungal interventions.
Panelists will include Victoria Beck, the mother of a child with Autism who
discovered the startling connection between Autism and Secretin; Paul Hart
MD, a pediatrician who is actively utilizing Secretin in his practice; Pamela
Ferro RN, mother of a child with Autism, utilizing biomedical approaches; as
well as the featured speakers, and other guests.
CIRCLE THIS DATE ON YOUR CALENDAR AND PLAN TO ATTEND!
Registration fee of $100 includes tuition, materials, continental breakfast,
lunch, and snack.
Lodging is available nearby for those who may wish to stay in Falmouth.
Brochure will soon be available. A limited amount of scholarships are
available.
You may register early by calling
Pam Ferro or Carol Wester at 508-758-3200

Martin~
I read a little of Dr Kane's comments, and based on that and gave my son
supplements of essential fatty acids. He not only started to like fish, he
quit toe walking, started talking like never before, his gross motors
skills zoomed up to his age level, improved behavior and his teacher sent
home notes about his incessant talking and getting his work done. He has
stopped perseverating too and he is no longer constipated. It has not
changed his obsessions however. He incessently talks about leaves and
trees. Well, nothing is perfect, but there were enough surprises to impress
me.
His OT has begun a series of oral massage exercises that is purported to
be a type of sensory integration therapy, to help with his oral
defensiveness. Success with introducing other new foods seemed to be
attributed to cartoons depicting animated characters eating. I noted my son
became fond of spaghetti after watching Lady & the Tramp a few times. Tuna
was introduced by Tom & Jerry the Movie. Other techniques have included
offering a glob of catsup on the plate for dipping. (amazing what my son
eats with that option).
This is not sophistocated: If you care to get silly, another option is
putting your plate on the floor and eating without hands. Just put you face
in the plate. I would have imposed an adversive to my older kids had they
done that, but if this works to get this kid to eat, I'll do anything. Good
luck. ~Marlene

Martin,
Dr. Kane and other experience folk particpate in the Gutgroup. You might wish
to subscribe OR I can cross-post your question for you.
What do you suggest?
Teresa

Please cross-post if you will.
Thank you.

To all,
This is an open question to anyone who cares to respond. One of the
areas that has resisted any remediation in our son is his diet.
Although we have tried often to introduce new foods to his diet he has
resisted mightily. I can't say we have come close to starving him but
we have made him *really* hungry but nothing seems to be able to break
him of his resistance.
I recently read a case history of a child very similar to my own who's
symptoms where greatly mediated (almost eliminated) by a diet
intervention developed by Patrica Kane. I thought her explanations of
why children like my son cannot tolerate different foods was compelling
(tracked very closely to why secretin may have beneficial effects).
I was wondering whether anyone else has tried a more sophisticated
approach to diet than "starving" and whether we would be wise to
introduce supplements that may induce greater appetite and variety in
food choices. We have been giving him iron regularly but this seems to
not have had much of an effect.
Any information and shared experience would be welcome.
Martin

Several "minor" additions and corrections were made at appx 7pm CST.
The document is better now.
Teresa

FEAT DAILY ONLINE NEWSLETTER Families for Early Autism Treatment
http://www.feat.org M.I.N.D.: http://neuroscience.ucdavis.edu/mind
"Healing Autism: No Finer a Cause on the Planet"
Letters to Editor: FEAT@... Archive: http://www.feat.org/listarchive

Dear Tracey (et al)
While I obviously have had and continue to have great doubts about some of
the ways "ABA" (or for that matter ANY therapy is being administered to
these children), the key is too have a forum for open discussion and debate,
as long as that is not vidictive, irrational, or totally unscientific.
Beyond that, it is my hope that the "NIDS List" will serve as a constructive
open forum for you and others to hear all sides of an issue. Unfortunately,
over the years, I have come to realize many "boards / interest groups" are
very self-fulfilling, literally avoid / rejecting "items" they did not care
for. IF there is any chance of unifying efforts to help our children now,
then there must be a forum for open discussion, and Tracey, parents must be
willing to investigate all sides of an issues, the pros and cons of each
approach, etc.
Good luck,
MJG
Message: 7
Date: Thu, 27 May 1999 09:25:42 -0400
From: tpenkmasucci@...
Subject: Re: ABA (Kim and Goodbye)
My name is Tracey and I have been lurking for a week or two now. I have
had wonderful experiences with ABA. I am one of the ones that Tom says
needs "deprogramming." I am defiantly leaving this list because I cannot
believe that such beliefs and thoughts are expressed (Tom Smith's
thoughts on ABA). ABA, Programming and other methods may not be for
every child. However if they work for some children that should be
enough, every child is different and no one therapy has been the cure all
for children with autism spectrum diagnosis'. Obviously Tom Smith has
not read "Let Me Hear Your Voice." I thought being on lists such as
these were ways for parents/educators and others to gain information not
to bash one another. Best wishes to all you open minded people.

In recent weeks a number of parents have asked "What immune tests
might help me, my child, and his or her physicians?".
I offer a list of tests I've found useful, along with explanation
and citations, on a newly posted webpage:
http://www.jorsm.com/~binstock/tests.htm
On that page, what I call the "Basic Panel" is a fine starting
point.
Suggestions are welcomed, and this post may be shared with other
folks and via other listservs, etc.
Teresa

Sandy,
I registered (and paid) for the NIDS conference by mail about three
weeks ago. Should I be receiving some confirmation or who should I call
to confirm that I am in fact registered.
Martin

Dear Listmates,
For those of you that wrote me about info on floortime, I provide the two
links below which will give you a good overview before you decide to go out
and buy Drs. Greenspan and Wieder's book.
<A HREF="http://www.saveachild.com/greenspa.html"
</A
<A HREF="http://www.saveachild.com/wieder.html"
For info on where Dr. Greenspan will be speaking in the upcoming months, here
is his personal website with information to contact his office for his
speaking locations.
<A HREF="http://www.stanleygreenspan.com/"
I hope you will find this information helpful.
Kind regards,
Ricci Carole Hedequist
List moderator, secretin-discussion@egroups.com

I'm just curious (perhaps it's the research nurse in me), but would the
parents of the kids who've been helped by efalex please post a general,
brief profile of your child and how much of an improvement you've seen with
efalex?
Please include if your child is diagnosed mild, moderate or severely
autistic, asperger's, etc., how quickly you saw results, any diet
restrictions or other supplements, history of diarrhea, constipation,
frequent ear infections, and degree and character of the results.
I'd like to then forward the info to Dr. Rimland with your permission. I
know this is very unscientific, but it could be a start to further,
necessary research.
Thanks, again,
Kim

Subj: Lovaas/Koegels/Greenspan/Boggled
Date: 5/31/99
To: <A HREF="mailto:jo_palmer@..."
Hi Jo& Phil
1. <A HREF="http://www.bridgesabatapes.com/"
2. <A HREF="http://www.psychiatry.cam.ac.uk/arc/"
Centre)
</A
3. <A HREF="http://www.neuroimmunedr.com/NIDS_Info/nids_info.html"
medical info site
</A
4. <A HREF="http://www.psych.purdue.edu/~esmith/scarch.html"
Cognition - Social Psychology Paper Archive
</A
6 <A HREF="www.education.ucsb.edu/~doniel/autism.html"
7.
<A

Hi listmates!
Just wanted to give everyone an update. We've been completely GF/CF for
almost 3 weeks. In that period of time, we've had two separate trials of
efalex. Each efalex trial has been 4 days long (we're currently on it again
with NO plans to discontinue).
The only time Lindsay has done well since being on the diet is when she was
also on the efalex. The change is obvious to EVERYONE. She is so much more
focused. Her eye contact is great! She has added about 10 more words to her
vocabulary again. We always did think Lindsay was happy, but on Efalex
she's almost "bubbly". She's calling my Grandma's name for the first time
ever (we call her "Nanny"-Lindsay says "NaNa" with a big grin)!
Also, 6 days ago, Lindsay was slipped BUTTERMILK PANCAKES. We expected her
to start "climbing the walls" or acting "tantrumy" or other poor behavior.
There was no change in her behavior, and this was during the period of time
in which she was off the efalex.
My take on the diet is this: I whole-heartedly believe that it works for
many kids, and that anyone with the opportunity to, should take the chance
that this diet might help their child, and get them on it as soon as
possible. However, I do believe that some kids will not benefit from it,
and I'm feeling Lindsay is one of them. She never had stool problems (other
than some grit post-gaspretin), she never had frequent ear infections or
frequent antibiotic usage. She used to have mild eczema, but this has been
gone for a while now. She's not allergic to foods, chemicals, etc. or at
least anything that we've tested for. I feel that maybe the kids that do
get better on the diet have had some of the before-mentioned conditions.
Also, I'm a nurse and my husband is a pharmacist, and both of us having had
extensive experience with the use of morphine, this is what we question: If
the diet is based on the "leaky gut" phenomenon where the gluten and casein
are swept into the bloodstream in their long-chained, unbroken down forms
(i.e. dermorphin), and that our kids with leaky gut are on a
"morphine-like" high prior to being put on the GFCF diet, then why would it
take, sometimes, months for people to see improvements on the diet, when
morphine has a half-life of 2.5 to 4 hours (the length of time that morphine
is "active"). It seems to us that, if our child was one of the children
that were to improve on the diet, that we would have seen at least SOME
improvement on it (other than the improvements she's made with the efalex)
by now, and that when she received the pancakes, there would have been some
adverse reaction. I know many of you will message me back telling me
otherwise, but it seems that the kids that have "recovery" from the diet see
improvements shortly after the removal of either gluten or casein or both,
and that if gluten or casein is accidentally received, negative results are
obvious. Also, it doesn't seem like Lindsay experienced any "withdrawal"
from either gluten or casein.
Also, Lindsay hasn't started therapy yet (she's to start this week). I've
heard of a number of accounts of people saying that they needed to be on the
diet for 9-12 months before results were seen. If that's the case, then how
do you know that it's not the therapy working for the child. I personally
know a number of people with kids on the spectrum that are recovered through
early introduction of therapy alone, and many of them do not use the diet,
secretin, or supplements other than a Flinstones chewable multivitamin.
The point that I am trying to make is, different things work for different
kids. But, I hesitate to have Lindsay stay on this diet much longer because
of the science of it. If anyone can offer me scientifical evidence as to
why we should stay on the diet longer, I'm open to learning about it.
At this point, we will remain on the diet, and our plans, at this point are
to give it a 3 month trial.
Thanks for listening, and I'm sorry if this was too long!
Have a great Holiday-and for all of you veterans out there-WE APPRECIATE ALL
YOU DO AND HAVE DONE FOR OUR COUNTRY! May God Bless You.
-Kim

This is a belated response to a request on the NIDS Onelist for someone in the
Wash D.C. area to check out the American Inn of Bethesda. This person had made
reservations to stay at the Inn for the 12-13 June NIDS conference, which is
being held at the USUHS facilities in Bethesda, Maryland. Apparently, the Inn
wasn't listed in the conference brochure and the person was wondering what it
was like. I can't seem to find the original post to reply personally, so I am
replying here on the list.
I was finally able to get over to Bethesda to check out the Inn in the late
afternoon yesterday (Friday, 28 May) and found the following:
The place seemed well-kept and nice. It's set back from the street a bit, so I
missed it on my first pass heading south on Wisconsin Ave, but I think that
anyone who has made reservations there will be satisfied. I can't speak as to
how it compares in quality or price to the other hotels listed in the conference
brochure, because I didn't see or price any of the others. Pricewise, this
place said they would give their government rate to anyone who said they were
attending the conference ($82 single, $86 junior/queen, $105 double). As of
Friday afternoon, they had availability on 11-12 June for all room types. I
looked at both a double and a queen. The queen room was sized to hold a queen
bed, a desk and a TV cabinet, so it was smaller than the double room, which was
sized to hold two double beds, but both rooms seemed well-tended (the bathrooms,
including the grout, were spotless, a big plus). The double room overlooked the
pool, the queen room overlooked an apartment building. There is a continental
breakfast in the morning (6:30am to 9am) in the atrium of the Inn's connecting
Mexican Restaurant and they provide coffee/tea and cookies in the afternoon in
the Inn's lobby (I forgot the hours). There are other restaurants in the area,
as well. Parking at the facility is limited (though I had no problem parking at
the hotel on Friday afternoon about 5pm), however the hotel noted that there is
a county parking garage across the street, behind the Amoco, which is $3.75 to
park all day from 7am to 7pm, but free at night (7pm to 7am). The Inn was
south of Battery and north of Highland at 8130 Wisconsin Avenue (on the right
side, heading south). My experience with most Wisconsin Ave locales, and I got
the late afternoon impression that this one was one them, is that they are
reasonably safe after dark (but I'd still keep a reasonable guard on my handbag
and stay aware of my surroundings, as with anywhere in most big cities).
The Inn's website is www.american-inn.com
Their e-mail is innkeeper@...
Phone is 1-800-323-7081, 301-656-9300, Fax 301-656-2907
If there are any other questions about the Inn, I'll try to answer. Looking
forward to seeing some at the conference. (Again, I hope I don't sound like I'm
soliciting for the American Inn, I am just trying to give a good answer to the
person who asked; I hope that person sees this post).
Sharrill Hemry

Ricci, Hello! Could you e-mail me and give me the links too? I would like to
learn more about this too. Thanks in advance! lois (mom to JJ bug)

My son is six years old and we are getting ready to try FastForword. My
biggest concern is the degree to which I will be able to implement the
program with him when he is feeling less than cooperative. any suggestions
from those of you who have done FastForword would be greatly appreciated.

Dear Listers,
I've noticed a flurry of recent subscriptions to the NIDS list!
New members may want to visit www.nids.net to get all the information
on the upcoming NIDS Conference: "Redefining Autism/ADHD/CFS" which
is now just two weeks away.
Welcome to our community!
Sandy

Dear Listmates,
I have to join CWithers in support of Floortime. My son was not diagnosed
until just under 5 years of age, and Floortime, along with speech/language
therapy, OT/SI therapy, and biomedical interventions has taken him from
severly autistic to moderate/high-functioning in less than two years. We
still have a long way to go, but for my son, Floortime has brought about
tremendous results in terms of going back and regaining developemental
milestones that he lost with the onset of autism, as well as reaching new
developmental milestones that I believe are critical for normal development.
His speech has flourished with Floortime (expressive and receptive), as has
his ability to relate to others, ability to use his imagination (symbolic
play) and so much more. In the first two weeks that we implemented a
home-based Floortime program, my son made such significant progress that the
entire staff at his speech therapy center was so impressed, they went back
East for Dr. Greenspan's training just a few months later. They now use
Floortime as the backbone of their speech therapy. I also like the Koegel's
Pivitol Response Training, which we have intergrated in part into my son's
program.
I am not a critic of ABA because I have seen it bring about significant
progress in many children. It was not available to us at the time my son was
diagnosed, and in many ways I am grateful for that, as we may not have
explored other options. I have also seen great progress in children using a
combination of discrete trials and Floortime therapies, and I am more
inclined to believe that integrating therapies may have more to offer than
just doing one therapy in its "pure" form.
As for mbounds comments below, we did not like the TEAACH program that was
offered in the school district where we were living at the time my son was
diagnosed, for the very reasons you mentioned below. I know TEAACH is
supposed to be flexible enough to modify certain things, but at this school,
the program was TOTALLY icon dependent, and we knew this would be counter to
what we were trying to accomplish with my son. My son had not lost all of
his language and we wanted him to use what he had and build upon that. I KNEW
the TEAACH program would not require him to do that. We opted for a
home-based program. I do know of a woman that has been able to get her
school to integrate the Floortime method with their TEAACH program for her
son, but it took a long hard battle. If this were possible, I think it would
be an excellent program for the school setting.
Before you run out and buy Stanley Greenspan's book (coauthored by Serena
Wieder), there are several web sites that have good info on this intervention
method. Email me privately and I will be happy to send you some links. As
said below, let's not debate this stuff. We are all doing the best we can
for our children. I would like to see kind and considerate discussion of
what is working for people and what is not, without slamming what someone
else is doing.
Kind regards,
Ricci Carole Hedequist
List moderator, secretin-discussion@egroups.com
Date: Fri, 28 May 1999 10:08:47 +0000
From: Martin Bounds <mbounds@...
Subject: Re: ABA-To Kimberly Ryan
From mbounds@...
This may or may not be a helpful comment, but, one of the more difficult
and frustrating factors in relying on "testimonials" from parents in
regards to the effectiveness of therapies is the lack of objective
measures.
When someone on an e-list like this talks about improvements in their
child it's hard to determine the degree. What are we measuring as
progress? The other obvious factor is that our children are all growing
and going through the most explosive developmental periods of life.
It's hard to separate improvements due to therapy and those that are due
to maturing/development.
Effectiveness also depends on the stage/condition of the child when a
therapy is introduced. For the record, we have been disuaded from
introducing an ABA-like program for our son by therapists. The main
reason seems to be that he exhibits a level of spontaneity and
interaction with his environment that the therapists who see him feel
would be thwarted by behavioral intervention. I'm not convinced that
some intervention would not help however.
I mosty concur with the note from CWither in regards to Greenspan's
"floor time" approach and the connection between emotion and learning.
I also agree that Dr. Goldberg's treatments have been extremely
effective at addressing the medical problems.
My personal preference would be to hear more specifics about specific
problem areas and how they were approached and mediated.
For instance, Withers comment about how the Koegels' program encourages
speech. My son is in at TEACCH program that deemphasises speech as a
goal. I disagaree with this and would find valuable any parent
experience of developing greater speech in their children.
Mostly, I would regret this message board becoming a platform for
rancourous debate on the relative merits of one system over another.

i'd address your question to Lynn Koegel @ "lynnk@...". She is
a licensed speech pathologist, has worked 20 + years with autistic kids
(along with her husband), and was a major factor in the progress with our
son. send her a message, and tell her C. Wither referred you.

Dear List-folk,
Could someone help me with information on auditory
processing problems(solutions??) in non-verbal autistic people? My son, for
example, is incredibly intelligent regarding human emotion (very sensitive)
and has much 'communicative intent', but...he thinks 'cup''&'up'/ etc=the
same thing...he has no hearing impairment...what IS this....and any ideas to
help? Thank you. Liz Lucy
PS. Please dont suggest 'Lovaas'/ABA'....we have been in hell with it for
over two years.(A.I.T. also a miserable failure). Thanks.

Dear List,
I just came over here at a request from a friend. I appreciate the mostly kind
and rational responses. The position I have taken on this issue is a product of
many years of work in the field and I know it is controversial. Only time will
tell. I do agree that ABA teaches parents basic behavioral methods which are
always important with dealing with autism. But I think ABA is more than just
teaching parents behavioral approaches.
Best of luck to you all and I can always be found at the Autismlist at egroups.
Tom Smith
Angelfire for your free web-based e-mail. http://www.angelfire.com

Dear Listmates,
This is just a reminder that pre-registration for the NIDS (Neuro
Immune Dysfunction Syndromes) Medical Conference ("Redefining
Autism/ADHD/CFS" June 12-13 1999, Bethedsa, MD) is open until May 31.
This two-day conference features speakers including immunlogists Dr.
Vijendra Singh and Dr. Nancy Klimas, as well as Dr. Audrius Plioplys,
(a pediatrician and neurologist at the Mayo Clinic), Dr. Michael
Goldberg, Dr. Byron Hyde, Dr. Jeffrey Galpin, and others.
Full details can be found at http://www.nids.net.
Sandy

My name is Tracey and I have been lurking for a week or two now. I have
had wonderful experiences with ABA. I am one of the ones that Tom says
needs "deprogramming." I am defiantly leaving this list because I cannot
believe that such beliefs and thoughts are expressed (Tom Smith's
thoughts on ABA). ABA, Programming and other methods may not be for
every child. However if they work for some children that should be
enough, every child is different and no one therapy has been the cure all
for children with autism spectrum diagnosis'. Obviously Tom Smith has
not read "Let Me Hear Your Voice." I thought being on lists such as
these were ways for parents/educators and others to gain information not
to bash one another. Best wishes to all you open minded people.
And now a message for Kim:
Kim -
My daughter has been using ABA (Madison 33 months) for 8 months now and
she has made TREMENDOUS progress.
I cannot say enough good things about it. Maybe the only I con I have
encountered is it is sometimes difficult for parents to watch (in the
beginning). However, now my husband and I can even do drills with her.
My daughter seems to love learning this way.
Madison is receiving Speech, OT, and Special Education (that's what they
call it). All these therapies are done using ABA and it works
soooooooooo well. It has not isolated her in anyway. Quite the opposite
she is more socially responsive than ever. Part of the reason for that
is they use social reinforcers which she enjoys (i.e. when she does
something requested she gets some hugs or tickles or play time).
ABA may not work for every child. However, it does and has worked for
many children. I wish you much luck with WHATEVER method you use. You
know what is best for your child.
Best wishes to all
Tracey (A cult member - ABA supporter)

FIGHT FOR THE ABA
We did TEACCH for 2 1/2 years and made a little progress, then we went to
intensive ( at least 30 hrs.) ABA and my son made more progress in 6 months
that the previous 2 1/2 years. Down side: it's expensive, exhausting, and
consumes your life (at least for the first year or so). Make sure your
husband is as committed as you are or it will strain your marriage
unbelievably. God bless.

Hi Sandy,
In ABA we are intensively engaging the person and continually prompting him
physically and verbally and giving praise. In Patterning we are intensively
engaging the person and continually prompting him, mostly verbally, and giving
praise. ABA aims to increase appropriate behaviors and so does Patterning.
Both interventions had numerous anecdotal claims about improvements and all out
cures. Both interventions claimed to be the best way to cure autism of it's
worse debilitations and gave high hopes to do it. They both required one on one
for a recommended 6 to 8 hours a day. Both have no scientific basis to their
claims. This is a herculean effort that smacks of a belief that would require
deprogramming if it was considered a cult. And I maintain from my observations
of parents doing ABA on the net that we might want to chip in for their
deprogramming. The pushers of these interventions are actually cult leaders and
don't you think it is high time that we call them on this nonsense?
That being said, I'm an avid supporter of some behavioral interventions. They
are valuable tools if used in a humane and rational way.
Tom Smith
Angelfire for your free web-based e-mail. http://www.angelfire.com

I'm very surprised to hear anyone equate ABA with Patterning. My
understanding of patterning is that the child is motored through
gross motor movements for many hours a day to "retrain" the brain
through the physical developmental stages of infancy and toddlerhood.
ABA is basically operant conditioning, and other than using it to
practice motor skills in a teaching environment, along with all the
other skills, I don't really see any correlation at all ....
Sandy

Tom,
Thank you for your insight. My husband and I greatly appreciate this. I
guess the safest thing to do at this point is to get Lindsay going on the
DT, ST and OT and based on her responses from those therapies (or lack
thereof) we'll decide from there, keeping in mind, of course, experiences
such as the one you describe.
All the best,
Kim

From: "Kimberly D. Ryan" <ryankd@...
but my case manager feels that ABA can besocially
isolating, and this might not be in Lindsay's best interest. Lindsaywill
be receiving OT, ST and developmental therapy.Any thoughts are appreciated.
Thanks, in advance,Kim/Molly and Lindsay's mom from Missouri
Hi Kim,
A friend sent me your email asking me to respond. Your case manager is on the
right track which is rather rare and courageous of her considering the safe
thing professionally would be to recommend ABA. I can imagine what a tough
situation you are in with this kind of decision. Instead of saying that ABA
might cause your daughter to be "socially isolated", I would be more concerned
with the frustration she will encounter with ABA and a resulting regression that
has occurred in many at the age of 7 or 8 and maybe as late as adolescents.
Though there may be some minor learning of more appropriate behaviors, the price
to her emotionally could be devastating.
For an historical perspective on this ABA hysteria, I would suggest you read
Barbara Christopher's "Mixed Blessings". She's a parent of an autistic son who
went through all the therapies available at the time ('70's). One of them is
called "Patterning" which resembles ABA remarkably. It is now discredited as
I'm sure ABA will be in the comming years. I worked with her son as an adult
and he was one of the most assaultive clients I ever had. There is no way of
knowing for sure whether his "Patterning" experience contributed to it, but he
sure wasn't helped by it.
I'd listen to your case manager for alternatives. Please feel free to email me.
Good luck and my heart goes out to you.
Tom Smith
Angelfire for your free web-based e-mail. http://www.angelfire.com

I need some help here. I apologize if any of you feel like I'm off topic,
but I don't know where else to go.
We were not approved by our case manager for ABA. I've heard so many good
things about ABA, that I'm concerned about Lindsay missing out on it. She
is 25months old, and I feel like this next year is so vital, and the
training and therapy she gets this next year will likely affect the rest of
her life.
Can anyone give me pros and cons of ABA? Is anyone out there also not using
it (it seems like everyone is using this)? My pediatrician feels like she
should have this, and that she's willing to provide letters to our Regional
Center requesting it, but my case manager feels that ABA can be socially
isolating, and this might not be in Lindsay's best interest. Lindsay will
be receiving OT, ST and developmental therapy.
Any thoughts are appreciated.
Thanks, in advance,
Kim/Molly and Lindsay's mom from Missouri

Apologize for not jumping in sooner (on this topic) - schedule has been
quite busy.
Most / all current children with "Autism" / NIDS, have reactive immune
system, and in term various expressions of allergies. ANYTHING that cools
down those allergies can be helpful (since the allergies kick up the immune
system, in tern increasing the brain shutdown "fog," Usually the first
step should be removal of offending items (foods), then there is a selective
place for antihistamine, cromolyn sodium, etc. for additional control.
As reflected by some of the conflict re "antihistamine" response, any agent
must be individualized to that child. I use antihistamines at night
frequently to help control PND, but I do not look upon them as a primary
agent in dealing with "Autism / NIDS" per se.
Hope this helps,
MJG

Dear Liz,
While the GI tract is certainly "out of balance" in these children, and in
turn one could argue subject to accumulation of "negative" factors, I do not
as a Pediatrician feel comfortable with any repeated usage of "ex-lax." If
an "occasional" usage helped you son, I couldn't say that was wrong, but as
I have tried to stress, the gut Is only a secondary part of the
neuro-immune-gut triad, and the overall focus should be to help a child's
body become healthy (in which case the gut will heal / clear itself).
Take care,
MJG
Date: Wed, 19 May 1999 13:25:53 EDT
From: Lizanj@...
Subject: 'Autistic Gut'dx today!
...Dear All,
am boggled indeed that today my GP reluctantly(!!)
informed me that our local Ped.Gastroenteroligist has diagnosed my son as
suffering from 'autistic gut' and the only treatment available is
laxatives....''try 'Ex-Lax''....and'' we'll review the situation in four
months' time. '' Well, I would be grateful for any suggestions as to how I
can boost Jamies immune system to fight the viruses (if measles is one of
them....there isn't a treatment) and to help heal his, obviously, painful
guts....I cant believe they have actually comitted this diagnosis to
paper...At least Dr.Wakefield has opened the eyes of the medical profession
to this problem and made them sit up and listen....( though I wish he had a
cure for it, as I know he doesn't to- date) but good on him and AiA for
getting the problem highlighted this far... this has to at least help
identify certain 'sub-groups' of Autism. Liz Lucy (still in shock!!).

FEAT DAILY ONLINE NEWSLETTER Families for Early Autism Treatment
http://www.feat.org M.I.N.D.: http://neuroscience.ucdavis.edu/mind
"Healing Autism: No Finer a Cause on the Planet"
Letters Editor: FEAT@... Archive: http://www.feat.org/listarchive/

Dear Lois,
While the eye movement could "long shot" reflect seizure activity (I
strongly doubt), I would be more concerned re "muscle imbalance" and / or
focus problems, potentially Central Nervous System in origin. I would
highly recommend a good exam by a Pediatric Opthalmologist (as a starting
point), then a pediatric neurologist if indicated.
Good luck,
MJG
Message: 4
Date: Sat, 15 May 1999 19:22:41 -0400
From: lois noland <jlois@...
Subject: Re: eye problems
Its me Lois I messed yp his age its 5 yrs thanks, Lois

Lois, my son detailed the parts of my little tomato plants as I was planting
them, including the roots, then he told me to water the baby plants. "roots
need a drink of water". I'm still impressed. He has been on Efalex for 6
weeks. He's is now up to his age group in gross motor skills. No change in
tree obsession though. ~Marlene

Sorry for delay in response. Plans are hopefully evolving to come back to
the D.C. area sometime in July. Please check with the office for details.
Take care
MJG
Message: 2
Date: Thu, 13 May 1999 23:36:02 -0400
From: steve and doris <sjsmith@...
Subject: a question for Dr Goldberg
Dr Goldberg:
I look forward to hearing you talk at the
NIDS conference in Bethesda in June.
Do you have plans to return to the Wash DC/Balto
area anytime after June for private consultations ?
Thank you
Doris Smith
Jacob's Mom
Millersville Maryland

Hi everyone!
Well its been 10 days since I started JJ on the efalex and so far no
side effects. BUT JJ has been saying some more words. He brung his
lawnmower to me and bent down and said "gascap, oil thing, motor while
touching each thing. And he has problems with oral apraxia and yesterday
I asked him for a kiss. Usually he just leanes up for me to kiss him but
he leaned over and PUCKED up to my lips! Also seeing better eye contact
for long periods of time. ok, I'll keep you posted!!
Lois (mom to JJ bug)

from a nonparent, who used to teach l.d. kids:
some doctors find that cromolyn sodium helps with the mast cells
releasing histamine, which happens in not only the g.i. tract but
all over the respiratory tract too. THIS ISN'T a regular antihistamine,
it has a different mode of action - ask a pharmacist for details.
theoretically, if the mast cells can be calmed down and release less
histamine there are less symptoms. not sure about brain symptoms,
but there can be less diarrhea in g.i. tract, and less sneezing &
inflammation of sinuses, lungs too. ask a pharmacist. they know.

My son (diagnosed autistic) also had terrible problems with his
gut--gastro-colic reflex as a breast-fed only infant, and severe constipation
in later years; we have witnessed a turnaround in gut related (and other
areas) problems by following the recommendations of Dr. Michael Goldberg.
He's on dairy, wheat, and sugar restricted diet, and is taking meds for viral
involvement, and yeast overgrowth; he also takes SSRI
Good luck

FEAT DAILY ONLINE NEWSLETTER Families for Early Autism Treatment
http://www.feat.org M.I.N.D.: http://neuroscience.ucdavis.edu/mind
"Healing Autism: No Finer a Cause on the Planet"
** May 23 Dr. Wakefield: Gut-Brain Axis Sacramento http://www.feat.org **

...Dear All,
am boggled indeed that today my GP reluctantly(!!)
informed me that our local Ped.Gastroenteroligist has diagnosed my son as
suffering from 'autistic gut' and the only treatment available is
laxatives....''try 'Ex-Lax''....and'' we'll review the situation in four
months' time. '' Well, I would be grateful for any suggestions as to how I
can boost Jamies immune system to fight the viruses (if measles is one of
them....there isn't a treatment) and to help heal his, obviously, painful
guts....I cant believe they have actually comitted this diagnosis to
paper...At least Dr.Wakefield has opened the eyes of the medical profession
to this problem and made them sit up and listen....( though I wish he had a
cure for it, as I know he doesn't to- date) but good on him and AiA for
getting the problem highlighted this far... this has to at least help
identify certain 'sub-groups' of Autism. Liz Lucy (still in shock!!).

Don't Miss It!!
The NIDS:Neuro Immune Dysfunction Syndrome Conference
Redefining Autism/ADHD/CFS
Bethesda MD on Saturday & Sunday June 12th & 13th
Offers 13 CME Credits!!
Featured Speakers:
Dr. Michael Goldberg, MD (CA)
Dr. V. Singh (MI)
Dr. Jeffery Galpin, MD (CA)
Dr. Byron Hyde, MD (Ottowa Canada)
Dr. Nancy Klimas, MD (FL)
Dr. Ismael Mena, MD (Chili)
Dr. A. Plioplys, MD (IL)
Dr. James Jones, MD (CO)
Dr. Susan Fosnot, SLP (CA)
We have brought them all together, and seats are limited and going
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Pre-Registration ends May 31st:
2 day conference prices:
Family Member: $150.00
Professional: $200.00
For more information, see www.mat.org, call 1-888-540-4999
or email me at jpweaver@...
SEE YOU THERE!!!

Folks,
I recently started my son on nystatin and saw some increase in stimming
(after
4 days) then a large decrease by 80% or more and now we see him acting
ill and stimming more. We took him to the pediatrician and he has no strep
or other infection. Could this be the Herxheimer effect? It was 2.5 weeks
on nystatin when this started and he's been on it for a full 3 weeks as of
today.
I was under the impressiont his was supposed to occur earlier in the
treatment.
Amanda
mnms@...

check this out!! Lois (mom to JJ bug)

I only know of one set of parents closely who believe the MMR deeply affected
their child and resulted in PDD; however, they would never ever allow a pix
of the child to be published, unfortunately, and also the child is not in
your state.

Gleaned from another list.

please un subcribe me from this list ,

As I have commented previously, depending upon how / what Dr. Wakefield is
currently saying (have not seen notes or summary from Orlando conference
yet), IF he is saying he is finding measles virus "particles" in the GI
tract, that would be consistent with every idea of immune dysfunction, and
part of the immune system potentially triggering an "immune mediated"
encephalitis (a well know phenomena in teenagers after a case of measles -
not caused by measles itself), but IF Dr. Wakefield (per his Lancet article)
believes he has "evidence" of active measles virus in the GI tract, that was
rapidly shot down by many prominent researchers, and I do not believe he can
in any call it an "accepted" fact or diagnosis. In that direction, while it
is correct to be proposing the name NIDS (which makes sense to an enlarging
group of physicians and researchers), as a way to medically look at this
phenomena, it would be wrong if I tried to say that was a "medically"
accepted term yet.
The other important point, is that whether viral particles, OR if proven,
live virus, the KEY is the immune system, and way to help its, NOT a
specific anti-viral issue (as questioned by Sandy, we have very few
antivirals that are effective or safe - we have nothing at present for the
measles family of viruses).
IF we focus on helping work with the children's IMMUNE system (a recurrent
theme at all "autistic" conference now), we can open the door IMMEDIATELY
to new agents, we can change a lot for these children now, while answering
and defining many "specific" scientific questions and issues along the way.
IF researchers and parents keep chasing "specifics," "origins," and
proposing multiple hypothesis (that do not tie the whole picture together by
themselves) it will be many years before answers come together enough to
change therapy options.
Hope this helps,
MJG
Message: 2
Date: Tue, 11 May 1999 09:59:29 -0700
From: "Marlene Bukitt" <wingding@...
Subject: Re: Autistic EnteroColitis ....
This could really upset the HMO barrel too, as now they would have to cover
autism testing and treatments. ~Marlene

For any interested, there is now a support list for parents and providers in
the St. Louis, Missouri (USA) metropolitan area. It is available at
www.onelist.com and the address is autism-stlkids@onelist.com.

Lois, WOW that is fast. I first noticed a difference in speech 24 hours
later, but then he was doing other things too, like playing with the
neighbor kids and actually RIDING his trike rather than dragging it around.
He also started dressing himself and working his own tv, vcr and selecting
the tapes he wanted to view. My son was already saying lots of words, but
never any long sentences. Have you noticed any improvement in gross or fine
motor skills too? I had comments from the teacher and both bus drivers too.
~Marlene

Dear Lois,
I found this link whilst searching for something
else....it certainly pertains to my kids' problems....(If link doesn't work
here please mail me privately)
<A HREF="http://www.autism.org/visual.html"
All the best....Liz Lucy

Wow!!!!! JJ got his first dose of efalex 4 hours ago and just 5 min. ago
he came over to me and said "stop get off" He meant he wanted me to get
off the computer!! He has never said that before!!! I"ll keep you
posted!!! Lois (mom to JJ bug)

Hi everyone, I'am writing for a friend thats not on the list but has a
grandson 9age 50 who has PDD. She said his one eye will go up and the
other eye will go down and it lasts about 1-2 min. Could it be seizers?
Has anyone else ever had this with there child? Thanks for any
information. I will send it her way. Lois (mom to JJ bug)

Hi everyone!
We just got back from meeting with Dr. Stayton in Independence, MO. He was
great!. For those of you who are not familiar with him, he is a DAN! provider
and is an allergist/immunologist and practices environmental medicine. He
attended the conference in Orlando and had a lot of exciting things to share
with us. We feel fortunate to have Lindsay under his care at the early age of
24months-we really feel that we are on the right track.
Dr. Stayton mentioned that Dr. Rimland had posed a question during one of his
lectures at the conference, asking if any of the parents there had children who
had "gritty" stools and many people apparently raised their hands. Dr. Stayton
asked us the same thing and I thought perhaps we had seen some with Lindsay, but
I guess I wasn't sure what he was talking about. Well we got home Wednesday
evening and there on Thursday was the GRITTIEST stool I have ever seen! So
ironic! It was like sand! I couldn't even get all of the "grit" off of her
bottom. I actually started laughing so hard at the irony and the extent of the
grit on her bottom that I almost couldn't finish the diaper change! I apologize
that this is rather grotesque, but is anyone else seeing this? I don't believe
my older daughter, who is non-autistic, had stools like this. Does anyone's
practicioner have anything to say about these "gritty" stools and what the
significance of them are? Could it mean that, in fact, Lindsay does have celiac
disease or the autistic enterocolitis. Her stools, prior to gaspretin, were
fairly normal, except we do believe she always had some gritty ones now and
then, but that we just had not taken any notice. Since gaspretin 3 weeks ago,
her stools have been more diarrhea-like, but just one stool/day.
Thanks for your input, in advance,
Kim

Kimberly,
I was wondering there was any mention on the significance of this
finding? My used to have this when he was two - I think it was
anytime he ate graham crackers. The daycare lady insisted that he
had to be eating sand except the he wasn't ......
Sandy
On 14 May 99 Kimberly D. Ryan (Kimberly D. Ryan <NIDS@onelist.com

Dr Goldberg:
I look forward to hearing you talk at the
NIDS conference in Bethesda in June.
Do you have plans to return to the Wash DC/Balto
area anytime after June for private consultations ?
Thank you
Doris Smith
Jacob's Mom
Millersville Maryland

Hello everyone! I sent this out awhile back but with all the contrversy
on vaccinations and MMR I thought I would run it again. JJ had 3
HOTSHOTS!!!! Lois ( mom to JJ bug)