Re: [NIDS] Pivotal Areas In Intervention For Autism/ Plus 8 New Abstracts

2008-05-31 19:47:22

Can someone please tell me how to get off this mailing list? Thanks

blood tests/immunology

2008-05-31 15:37:49

In a message dated 4/24/01 11:56:16 AM Eastern Standard Time, evchk96@...
writes:
When I saw Dr. G speak, he said that we would still all need therapists--I
thought he meant ABA therapists--to bring our kids back up to where they
should be. Your child will still need intensive therapy if your child is as
far behind as mine. (He is 6 years old, but developmentally is still about
2.) Yes, ABA is intensive, but it is the best shot all of our kids have.
Pursue all avenues--biomedical, ABA, speech, OT. That is my motto!
Tracy

blood tests/immunology

2008-05-31 11:38:41

To All,
I am taking my son to see Dr. G. I notice a lot of you have your children in
ABA therapy. How do you know it's not just the ABA that is making your children
better? I have heard and seen in the media, children who completely recovered
with just ABA. I consider ABA to be an extreme. If I have to go that route and
take my child to Dr. G, I don't know. I was under the impression that this was
a disease of a problematic immune system, that Dr. G can help. I can see a
child needing therapy (speech, O.T., etc), because this disease has caused them
to regress, but why would they need ABA? I was at the Iowa conference, and Dr.
G eluded to the idea that parents shouldn't have to be spending $60,000.00 a
year on ABA, when what their children had was a "neuroimmune dysfunction" that
could possibly be helped with good, sound medical practice (antifungals,
antivirals, SSRI'S). I am confused??

Gene links autism to bipolar disorder and Schi.....

2008-05-31 07:09:19

I thought you might be interested in new finding:
National Alliance for Autism Research
FOR IMMEDIATE RELEASE Contact: Eric London, M.D., V.P. Medical Affairs
888 .777.NAAR
Date: 4/16/01
Autism Gene Discovered
GENE LINKS AUTISM TO
BIPOLAR DISORDER AND SCHIZOPHRENIA,
OFFERS HOPE FOR TREATMENT
In a surprise finding from an international research team led by
researchers
at the Campus BioMedico University in Rome, Italy, Drs. Flavio Keller
and
Antonio Persico announced the discoveiy of a gene that may increase the
risk
of a child's developing autism three-fold. The gene, which produces the
protein reelin, has recently been associated with bipolar disorder and
schizophrenia.
The reelin gene is known to be involved in proper "lamination"-or
layering-of brain cells in utero.
But unlike many developmental genes, the reelin gene continues to be
expressed throughout life, potentially giving the phannaceutical
industry
its first "target" for an autism medication. If reelin proves to be
important in autism, pharmacologists can attempt to create medications
that
manipulate reelin activity in the brain.
Researchers do not know what function the protein performs in the
postnatal
brain. Some believe it is critical to neural plasticity and learning.
The finding surprised observers because the Italian team was not
studying
reelin. As part of a larger study of autism and serotonin, they were
attempting to replicate work by Karl Reichelt of Norway finding an
abnormal
presence of peptides-small pieces of proteins-in the urine of autistic
children~
But Keller and Persico could not find Reichelt's peptides in their
subjects.
When Dr. Reichelt supplied his original samples for re-testing, two
laboratories were unable to identify the peptides in Reichelt's samples,
either.
For most researchers the study would have ended there.
But it didn't. While waiting for the third and final set of lab results,
Keller and Persico-convinced the peptides had to be present-hit upon the
idea of checking them against the vast library of known human proteins.
When they found that the only protein containing both peptides was
reelin, a
protein involved in neurodevelopment, they knew they had struck gold.
Because the gene for reelin is known, they could examine it in people
with
autism. Twenty percent of their autistic population, they discovered,
carried extra-long versions of the gene. The long variant would be
expected
to result in a reduction of reelin in the brain.
The findings, published in the March issue of MOLECULAR PSYCHIATRY,
represent the second autism gene to be reported in a fOur-month period.
"This is an unprecedented rate of progress for a complex disorder," said
Dr.
Eric London, Director of Medical Affairs for the National Alliance for
Autism Research, which funded the research. "Geneticists estimate as
many as
15 different genes may put children at risk of developing autism. To
have
two strong gene studies published in four months is nothing short of
miraculous."
The National Alliance for Autism Research was founded in 1994 to fund
biomedical research into the causes, prevention, treatmfnt and cure of
autism and related disorders. Since 1997, NAAR has committed more than
$3
million in grants to 50 scientists in the United States, Canada, Italy,
Spain and Russia. This year alone, NAAR committed more than $1.5 million
in
research grants to 20 scientists in the United States and Europe. For
more
information about NAAR and autism, please log onto NAAR's website at
www.naar.org.
Reelin gene alleles and haplotypes as a factor predisposing to autistic
disorder
AM Persico, L D'Agruma, N Maiorano, A Totaro, R Militerni, C Bravaccio,
TH
Wassink for the
CLSA, C Schneider, R Melmed, S Trillo, F Montecchi, M Palermo, T
Pascucci, S
Puglisi-Allegra~ KL Reichelt, M Conciatori, R Marino, A Baldi, L
Zelante, P
Gasparini and F Keller
Molecular Psychiatry
Autism is viewed as a complex neurodevelopmental disorder. Reelin is
critically involved in the development of many brain regions displaying
alterations in autistic patients. The authors have identified a repeated
GGC
sequence in the gene encoding Reelin that might affect gene expression.
This
GGC stretch is "polymorphic", meaning it differs in length among
different
individuals. Approximately 90% of the general population carries either
8 or
10 GGC repeats. Interestingly, longer variants encompassing 11-23 GGC
repeats are found in as many as 20% of autistic patients, and inheriting
a
"long" allele leads to a three-fold increase in risk of developing
autism.
This finding represents the first genetic factor consistently
predisposing
to autism in several distinct patient samples, and links autism to a
plausible neurodevelopmental mechanism. Although "long" reelin gene
alleles
characterizes only 20% of their patients, this result fits exactly with
expected single gene contributions to a complex disorder, such as
autism.
NATIONAL ALLIANCE FOR
AUTISM RESEARCH
www.naar.org
888.777.NAAR
national alliance for autism research, page 1, 4/16/01 reelin: what it
may
mean for autism research
reelin: what it may mean for autism
1.
The reelin gene is both a housekeeping gene and a developmental gene.
Developmental genes operate in the womb. A developmental gene directs
the
development of some aspect of the body or brain, and then turns off.
Developmental genes do not operate in the child or adult (although
"reactivated" developmental genes may be involved in cancer in adult
life-)
Housekeeping genes operate in the here-and-now. Housekeeping genes are
the
body's "operating system": everything we do, think, feel or say is
carried
out by housekeeping genes.
Because housekeeping genes operate in the present, they may be easier to
treat. Defects in developmental genes often result in structural
defects, or
differences, in the body or brain. Patty Rodier's work on the HoxA gene,
which is involved in very early development of the brain stem, implies
that
autistic children aie born with a structural difference or defect in the
cerebellum.
Structural defects or differences can be treated chemically. Parkinson's
disease, in which dopamine-producing cells in the sub stantia nigra
progressively die off, can be treated in the early stages with the
medication levodopa, or L-dopa, which the brain uses to make dopamine.
Put
very simply, structural differences naturally result in biochemical
differences. Pharmacologists develop medications to treat the
biochemical
difference.
And, of course, stem cell researchers hope one day soon to be able to
replace missing or damaged cells with new and healthy cells.
Nevertheless, many or perhaps most autism researchers hope to discover
that
autism results largely from differences or defects in housekeeping
genes. A
defect or difference in a housekeeping gene creates a biochemical
difference, such as low levels of synaptic serotonin in clinical
depression,
for instance. Pharmaceutical companies know a tremendous amount about
how to
create medications that "up-regulate" or "down-regulate" chemicals and
their
functions in the brain and body.
If the association between Keller's reelin "allele" and autism is
replicated-and if researchers find evidence that the reelin allele
causes
autistic symptoms-pharmaceutical companies can develop a medication to
manipulate reelin function in the brain.
national alliance for autism research, page 2, 4/16/01 reelin: what it
may
mean for autism research
2.
Dr. Keller reports that the reelin protein in autism should be normal.
The
problem should simply be reduced levels: too little reelin.
3.
Some researchers believe that reelin is important to learning and
memory. If
true this would obviously be highly relevant to the treatment of autism.
(Reelin research is so new that a parent who did a Medline search found
that
every abstract on reelin had been published within the past 6 months. It
wasn't until recently that researchers knew the reelin gene continued to
function throughout life.)
4.
In post mortem studies of autistic brains, researchers at the University
of
Minnesota (Fatemi, et al) found a 43% reduction in reelin levels in the
Purkinje cells of the cerebellum compared to non-autistic brains.
Because
researchers suspect that many or most people with autism have reduced
numbers of Purkinje cells, Fatemi's finding may raise the possibility
that a
reelin medication could benefit many people with autism, whether or not
they
have the particular reelin gene variant Keller has identified.
5.
The reelin receptor, or part of it, is also the receptor for low density
lipids (or "bad" cholesterol.) Clarence Schutt, Ph.D., chairman of
NAAR's
board of trustees, Director of the Graduate Program in Molecular
Biophysics
at Princeton University, interprets this to mean that autism could prove
to
be a cholesterol disorder. It's possible.
6.
Keller's reelin "allele," or "variant," is a normal version of a normal
gene. Ed Cook, M.D., of the University of Chicago, conservatively
estimates
that at least 50% of the population carries autism genes. (See
http://www-psy.bsd.uchicago.edu/--student/ldn.html) In a recent lecture
Ian
Lipkin, M.D., an authority on chronic nervous system disorders and their
links to infections agents such as viruses or bacteria, told audience
members that 100% of the population could logically carry one or more
autism
susceptibility genes.
7.
A team at the University of Illinois has found reduced levels of reelin
in
schizophrenia and bipolar disorder. This is intriguing in light of the
strong association of bipolar disorder and autism in population studies.
Robert DeLong, M.D., of Duke University, has advanced the hypothesis
that
autism is a "phenotype" of the genes for bipolar disorder when they are
expressed in infancy. In other words, when the genes for bipolar
disorder
become active at birth the individual becomes autistic. When the genes
are
not expressed until late adolescence the individual becomes bipolar.
Both
autism and bipolar disorder are phenotypes of these genes.

Autism Awareness Action website: http://members.xoom.com/Jn516/
Unlocking Autism's website: http://www.unlockingautism.org
H.E.A.R.T - "Hear My Silence" CD fundraiser for
Autism Research - www.helpautism.org
If you live in Texas, join Texas-Autism-Advocacy@egroups.com by clicking

Re: [NIDS] Our Kids Can Get Better

2008-05-30 18:20:38

I'm very interested in your post, because my child has been a patient of Dr.
Goldberg for about 1 1/2 years, and I'm ready to throw in the towel. She has
made absolutely no progress at all on his regimen, in fact in the last 6
months she has regressed. He keeps telling me to persevere, but I feeling
increasingly disheartened. It seems in 1 1/2 years we would have made SOME
progress! We have been doing Prozac, Famvir (Dr. G just discontinued that
with no visible effect), Diflucan, and even Kutapressin. Nothing helps!
Wouldn't we have seen some inkling of progress by now?
Very discouraged....

Our Kids Can Get Better

2008-05-30 08:40:38

I am posting this message because I have a son with autism. We
started seeing Dr. Goldberg for eight years. We started when my son
was about four and a half. He is now twelve. Ryan is one of the few
lucky ones who have been helped by current medical interventions. He
is now just a regular kid in a regular sixth grade classroom without
any special help. I want all children to have the same chance that
Ryan now has.
When Ryan started kindergarten, he was in the third percentile for
speech.
When he was tested again in the third grade, Ryan was at the 85th
percentile. Fortunately, we don't need to have him tested anymore so
we don't know exactly where he would score today.
On his sixth grade report card he brought home all "A's. " But more
importantly, Ryan is happy, has friends, and succeeds socially. For
someone who had to be taught almost every social skill, Ryan now has
a great group of friends. Even if you could wave a magic wand and
make a kids body "normal," these kids would not be normal. Once we
helped him biochemically, he was able to learn. We taught him the
things he missed when his body wasn't functioning properly using
teaching techniques based on methods of behavior modification.
Research and medical interventions are the only way to ensure that
there will be help for these children. Doctors and parents who are
trying to promote a universally accepted treatment for autism started
the NIDS (Neuro-Immune Dysfunction Syndrome) Research Institute.
Parents run NIDS and all the money donated is used for one purpose:
to promote medical research that will help identify and correct the
neuro-immune dysfunction associated with autism, ADD (Attention
Deficit Disorder), ADHD (Attention Deficit Hyperactive Disorder), CFS
(Chronic Fatigue Syndrome), and others.
Our children all have something in common. Their immune systems are
not functioning properly. Kids like my son have shown that if their
medical problems can be corrected, they can lead normal lives. It
needs to become common knowledge that children with NIDS can get
better.
The medications Ryan is taking help his immune system to function.
One mom who posted on this site was worried about the long-term
effects of these medications. My son is now twelve. The
anitfungals, antivirals, and SSRI's he still takes fortunately have
not had any long-term effects on my son's health. One of the hardest
things is figuring out the optimum dosage. Fortunately, Ryan's blood
tests are now in the normal range. The reason we do these tests is
to ensure these medications are not doing any harm.
Unfortunately, these interventions are not yet a cure. Ryan is
indistinguishable from other kids his age, but he is not cured. If I
stopped his medications, he would regress.
In the confusion after we moved, I failed to refill my son's
prescription for antivirals. I had no idea how important they were.
I really didn't think they were doing anything. But in just two days
I saw "bizarre" behavior I hadn't seen for years from this child. I
quickly got the prescription filled and in a week he was "normal"
again. But Ryan's successful treatment and the treatment of others
like him have shown that the NIDS Research Institute physicians are
correct in their theories. We are so close to a cure.
I wanted share with other parents what can be possible for your child
if you work constantly. We worked at this twenty-four hours a day
and it was the hardest thing I ever did. There were times I thought
I would go crazy and probably did a little.
The hardest part of these kids is to keep going and to be more
stubborn than they are. When he was little, I really didn't believe
he would ever be "normal." His behavior was so bizarre. I had to
keep talking to him even though I had no indication one way or other
he was learning. It wasn't until much later I realized even though
he wasn't responding; he understood what I was saying. Back then I
thought he would never be okay; I did many things so I wouldn't have
guilt later. I wanted to be able to say I did everything possible to
make my child better.
The hard part in the beginning was how to tell which medical
interventions were working. How can you tell if medicine is working
when your child has limited verbal ability? It takes years for
a "normal" child to learn language. Even if someone could wave a
magic wand made my child's body normal, he still wouldn't have been
normal. He spent too many years not speaking, not learning what he
should, and learning weird behaviors that helped him survive this
hell. It took many years to reteach him.
Even though Dr. Goldberg is my personal hero, we still argue over
what is best for my kid. I don't accept what he says blindly. I'm
Ryan's mom and I learned a long time ago that I am the one ultimately
responsible for helping him. I too saw two many doctors and
understand the distrust you have of the medical profession, but Dr.
Goldberg is one of the good guys. In the beginning there were some
minor problems because of the trial and error needed to access the
right dosage for some medications. And not all medicines work
equally well for all kids. It takes time to find the right ones, but
this man has the best intentions for each kid he treats.
Dr. Goldberg and I still don't agree on how to do the diet, and used
to have some pretty heated arguments about that.
He told me he wasn't sure taking my son's tonsils out would have much
of a benefit and it was major surgery with risk. I had the surgery
done anyway and it was the right decision for Ryan. No you
shouldn't blindly accept what any doctor says, but I trust him more
than any other.
Just like the kids he has helped so much, Dr. Goldberg is a little
obsessive compulsive himself. He will not stop fighting the medical
establishment or anyone else until he has convinced all of them these
kids are sick and can get better. He wants all NIDS children to have
the same chance at life that my son now has. Not only has Dr.
Goldberg given up his own existence to help these kids, he drags his
wife and entire family into his obsession to cure these kids. They
have no personal life and there is a special place in heaven for
people like them
Parents given the diagnosis of autism for their child understand just
how devastated you feel. All your dreams and hopes for your child
are squashed. You want it to be anything else. But know, my kid is
living proof autistic kids can get better. Writing this message and
articles is my payback, because my kid is okay. Another mom helped
me through this and if you have a child with NIDS I hope you will
help someone else after your child improves.
Autistic children like my son are proving they are individuals with
normal or above normal intelligence. Unfortunately, they are often
thought of as kids that cannot be helped. Please help the NIDS
Research Institute make recovery from autism the norm rather than the
exception. We need your help because there are kids not getting
better every day.
The first psychiatrist I saw told us Ryan would never be okay, and
the best prognosis I could hope for would be that some day he would
be running a computer in some basement away from other people. This
psychiatrist (the "leading authority" on autism in the Twin Cities)
went on to tell me how most of these kids end up in prison or mental
institutions and we would just have to see how he turned out.
In retrospect, her devastating prognosis was probably the best thing
she could have done for my kid. At first I was paralyzed with
grief. Then my husband and I just got angry and vowed we would not
wait around to "see how he turned out."
My husband and I went from doctor to doctor in various states trying
to find someone to help Ryan. But what we found was too many
physicians that had no understanding or knowledge of autism. They
had nothing to give us, not even hope. Sadly, we usually knew more
about autism than most of the so-called experts we went to see.
Fortunately, we found Dr. Michael Goldberg in California. My son's
recovery is directly attributable to his treatment by Dr. Goldberg.
Dr. Goldberg uses lab tests and proven medicine to treat autism.
These medical treatments worked for Ryan and made it possible for him
to learn all the things he missed when he was not speaking or hearing
us. I know Ryan's recovery would not have occurred without Dr.
Goldberg.
One of the first things Dr. Goldberg did was to send us to Harbor
UCLA Hospital in Torrance to have a NeuroSpect analysis. This test
measures the blood flow to different areas of the brain. At the time
it was relatively new technology and available in only four places in
the United States. By reading this test, doctors can tell if a child
will have a learning disability in math or reading. They can also
tell if a child is ADHD or autistic.
For most children correctly diagnosed with autism, the NeuroSpect
shows decreased blood flow to the temporal (and parietal) areas of
the brain. My son's spect showed he was autistic. After many years
of treatment by Dr. Goldberg, the spect was repeated. The blood flow
to the affected areas of the brain had improved dramatically.
Unfortunately, each child with NIDS is different. What works for one
might not work for another. Although similarities exist, each child
with autism may have different biochemical problems. Just like there
are many people who are blind, the causes of their blindness may be
very different. If the answer were the same for all children, autism
would have been cured long ago.
Extensive lab work needs to be done to determine what is not working
in each individual. We need to scientifically identify what
treatments will work for each child and test new agents that could
possibly help more children to recover.
My kid is going to make it, but there are too many children with
autism that never will. Some parents have given up hope of ever
helping their children. I want them to know that our kids can get
better.
All the doctors told me he would never have a sense of humor or be
able to have empathy for other people's feelings. They couldn't have
been more wrong. My son is sensitive and makes us laugh. I hope we
can get the message out so other parents don't just accept the life
sentence that well-intentioned but misinformed doctors are handing
down.
Currently, Ryan has a speaking part in the middle school play. This
is quite an accomplishment for a lowly sixth grader who usually has
to pay his dues in the chorus. Ryan is Mr. Bundles McCloskey in the
play, Annie. When I see him on the stage flirting with Miss
Hannigan, I sometimes wonder what his life would have been if I had
believed all those doctors.
The reason I am posting this is for kids who can't speak for
themselves. The NIDS Research Institute, Dr. Goldberg and all the
doctors associated with them are working to give children with neuro-
immune dysfunction a future. As I said earlier, there are kids not
getting better every day. Please help us change that.

blood tests/immunology

2008-05-30 08:20:20

Erica,
Amen. It is our responsibility to research everything related to what
treatments, etc., our children receive. As we know, there are people out there
willing to become rich off our family's misery, and we don't know who these
people might be. It's up to us to be aware and informed.
Kathy

THANKS to everyone who responded

2008-05-30 00:41:51

Hey again,
I was the one who said that the school district was wanting to video tape my son
at school. I appreciate everyone's opinions and advice. One person suggested
we just stall them and give them something they had to do. Well, we told them
we wanted, in writing, why they were doing it, what they were wanting to
accomplish, what guidelines were they "grading" it by , etc. Well, we haven't
heard from them about it anymore. To answer our questions would mean that they
would actually have to sit down, think, collaborate, and address each of my
concerns. What are the chances that they will just say, "never mind"?
The lady who was requesting to do the video is actually the "lead special ed.
teacher", or whatever. She called me on the phone and, while trying to use a
calm tone of voice the whole time, began to make criticisms about my son's
progress, his ABA trained aide, etc. She has been to observe him one time all
year, and that was last week. She was making broad sweeping statements about
his lack of social interactions with his peers because he did not talk to anyone
at lunch. That was what she was basing her judgement on. I, also trying to
maintain a calm voice, layed into her and pointed out that she had only been one
time, ..... Needless to say, my "calm voice" did not last very long. If she
said it once, she said it ten times, that I had offended her (especially when I
accused her of not having even read my son's IEP). Then, at the end of our hour
long conversation/disagreement, she told me that I was a very hard person to
talk to!!!! What a titty baby. If she thought that was being hard to get along
with, just wait till the IEP meeting. She hasn't seen anything yet. I am
totally capable of being civil and calm, but when the situation warrants it, and
it usually always does (because they just simply have their heads stuck up their
butts), I turn into the lioness protecting my cub. These people are evil.
Anyway, I do appreciate everyone's comments. Wish me luck.
Trina

Re: [NIDS] THANKS to everyone who responded

2008-05-30 00:12:28

Trina,
Good luck! Are you familiar with a site known as wrightslaw.com? This was
invaluable to me when we took our district to due process a couple of years
ago. Due to this case, and this site (our lawyer leaned heavily on it)--our
district settled on every point in our due process complaint.
Our district had never lost a due process previously, nor had they ever
settled one.
The interesting thing about Pete Wright....he is the nations leading attorney
in disablity law...is that he was diagosed as MR when he was in school. His
site is a wealth of information...marvelous work this man does.
It awes me that this woman's complaint is that your son does not socialize
well or talk to others at lunch. Sheesh, the ignorance we have to deal with
on a daily basis. I remember once our special ed director told me that "no
matter what the district does, your children will always be autistic." All I
could say was...."thank you for your expert insight."
My son Jamie's IEP is the first week of May. Jamie no longer fits the
diagnostic criteria for autism. In fact, he is cognitivally above age level,
functioning at the well above grade level. He does still have a slight
speech delay, but that, too is becoming less noticable. He's coming along
socially, having suddenly grasped what emotions in others mean. (Thank you
Dr. Goldberg!)
I can't wait to see our Director of Special Ed's face when I ask that Jamie
be tested for gifted and talented services. (He fits the criterion, lol, why
not?)
Remember, if your son is receiving verifiable "educational benefit", the
program he has is appropriate. Educational benefit is the catch term by
which every due process case is ultimately judged.
Politely remind your district of what I'm sure they've reminded you a
thousand times--(even though we know it's not always true..)--autism is a
life long developmental disorder. Socialization is challenging even for the
most high functioning children. Even my child who has been described as
"normalized" is probably never going to lead the conga line at his senior
prom, lol. We teach these kids to build on their strengths, and mold their
more challenging behaviors into something that won't seem bizarre when
compared to their overall personality/behavior. We aren't giving brain
transplants here, lol.
Do you have a data log (drill book?) summary of your son's drills and
progress? We keep monthly reports on each drill, what the goal of the drills
is, and a break down of the SD levels we are using to achieve the educational
goal. (example: Goal is touch ball. SD--hoh prompts, minimal prompts, point
prompt, eye prompt, no prompt, etc.). When an ABA program is summarized in
this way, no one can deny that the child is making progress.
They are filed with the district per our IEP and are placed in my children's
cumulative files.
If you have one (A data log), organize the data in light of the eductional
goals in his IEP's. When you have your new IEP, ask that his ABA goals be
mirrored in the IEP educational goals (most books are divided into
cognitive, expressive language, receptive language, verbal imitation, gross
motor, fine motor, etc....much like IEP goals) Make sure the measurement
method includes "data log" along with teacher observation, which districts
love to fall back on.
When it comes down to due process, often the winner is the guy with the best
paperwork, lol.
I have a room full of data from both of my sons programs. God forbid there
should ever be a fire in this house, but I refuse to part with anything.
I'd love to hear how things go, and remember you do NOT have to sign an IEP
you object to in any way. In fact, I'd beg you not to. You also have the
right to have anyone present at that IEP that you deem appropriate. If you
want your ABA supervisor there, add her to the list. (You probably already
know all of this, if you do, I apoligize. I once told the district that i
had the right to write the moon is made of cheese on my child's IEP--and they
grudgingly agreed as I wrote all of my reasons for objection on the bottom of
the IEP.
And remember, what you are doing for your child today is carving the path for
many more children to follow. This is important. I'm proud of you.
We're having Mafia t-shirts made here, lol. (Mother Advocating for IDEA A
wareness). Want one for your IEP? <g
Traci
(used to be a nice person...)

NIDS chapter info....Kathy??

2008-05-29 18:16:49

Kathy and other chapter folks,
I had saved the information about starting a NIDS chapter, but have had
computer problems and lost it. Would someone mind resending the information
privately. Sorry to ask twice!
Sharon

blood tests/immunology

2008-05-29 08:16:41

Erika -
I agree with most of your comments. We have been with Dr. G for almost two
years. I think that questions are good things - especially when you are
trying to get the NIDS word out and people that want to "do Goldberg" ask a
heckuvalot of questions! I would love to know exactly what all her
bloodwork means - but, I don't walk around wringing my hands about it. If
something is way off track from one draw to the next - I send in my e-mail
and ask about it. I agree that putting full trust in anyone - doctor,
speech therapist, behaviorist, etc... is very convenient. I get tired of
being in charge. I get tired of micro-managing every aspect of my
daughter's "education" and "therapy". Sometimes I do take a break and go on
auto-pilot, but I pick up the reins again and ask for test scores and "where
are we going with this" questions. I have often joked that you could never
hire anyone to do my job - coordinate all therapy, take all the goals of
EACH therapy and reinforce them at home, maintain an extensive pharmacy in
my home, follow the diet, volunteer the zillion hours at school, attend
committee meetings, keep current on different new therapies, etc., etc, and
OH YEAH, I have two other children. It would be wonderful to sit back and
let someone else take over, but I want to make the decisions on what we are
doing and will defer to good common sense and those whose experience I
trust. So, you need to question and you also need to trust.
Dr. Goldberg keeps his website OPEN just for questions. He continually
reminds us that we need to "demand good science". This includes him. I
thank God that he "questioned" why his wife and AI kids in his pediatric
practice had such high viral titers. I don't know where we would be today
if not for his searching and butting heads against "established Western
science" for these past years (eight or more???). So both of you are kind
of right. You need to find a middle ground and stay the course. I would
never "blindly" follow anyone because #1, no one is going to care more about
my child than me, but Dr. G has been a firm grip in our crazy world and I am
grateful for it.
Ginger

blood tests/immunology

2008-05-29 05:01:07

In a message dated 4/20/01 9:12:56 PM Eastern Standard Time,
eahcsc@... writes:
Well said! I feel the exact same way. I have taken my son to see so many
doctors who either just wanted to put my son in a constant state of sleep or
doctors who just wanted to take advantage of our situation and charge us a
fortune. I really like what Dr Goldberg has to say, but does that mean I
trust him with 100% of my son's recovery? NO WAY! And I don't think Dr.
Goldberg would want me to either.
Tracy

blood tests/immunology

2008-05-28 23:40:40

You guys are all starting to sound like first year medical students.
BEWARE!! You'll find yourself becoming convinced your child has every
disease known to man (and if you REALLY get into it, you'll start believing
they got it because you have it!!) Am I alone here in trusting that if any
of this labwork is grossly abnormal Dr. Goldberg would address it in a phone
conf., not wait for you to bring it up? Don't sweat the small stuff--judge
by how well your child looks and acts and leave the details to the experts.
As a nurse practitioner, I spent WAY too many years taking the responsibility
for being both mom and doctor to my son. When I FINALLY found Dr. Goldberg
and actually met him, I breathed such a sigh of relief because at last I had
found someone who is caring and knowledgeable. Forget trying to out guess
and out -think the expert. Relax and be a mom or dad...believe me, he hasn't
failed us yet has he?!! Linda

For Calif. Residents

2008-05-28 18:25:48

Hi fellow Listers,
Just wanted to let you all know about a legal service that is now available
to you Calif residents. For a nominal monthly fee, you have unlimited
telephone access to attorneys familiar with different realms of the law
(apparently, including special ed and medical insurance) to gain advice and
legal counsel.
This service is available through Rachael Lumberg @ GretaBMW@....
Rachael is my ASD daughter's Behavior Specialist. Sounds like something
worth checking out!
Tina M. Hendrix
CureNIDS2000@...
President, NIDS Coalition, Northern California
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

cost of initial blood work up any othe rinitial stuff, dr visit, etc.

2008-05-28 12:33:20

how much does the first round of Dr. Goldberg's cost?
[private email always preferred as I VERY often miss notes in the digests]
JoyceW, So Calif, divorced, work FT, Homeschool TWTM,
5y7m old son, dx'd "PDD" I suspect SID/Aspergers/NoSpeechDelay
Feingold diet'ers ; almost CF now; considering going GF

re: blood tests/immunology

2008-05-28 01:17:43

Just to annoy everyone further. :)
I found this site on platelets:
http://webmd.lycos.com/content/asset/adam_test_platelet_count
http://www.itppeople.com/aboutplate.htm
http://medhlp.netusa.net/forums/maternal/archive/3460.html
http://www.edcp.org/html/kawasaki.html
By far, the most useful site to me was the first one (lycos)
because it states this:
Additional conditions under which the test may be performed:
[various conditions deleted in trying to find those more related to immune
dysfunction and NIDS]
a.. chronic symptomatic HIV infection
b.. congenital platelet function defects
c.. idiopathic aplastic anemia
d.. infectious mononucleosis (CMV)
e.. infectious mononucleosis (EB)
f.. multiple myeloma
g.. pernicious anemia
h.. primary myelofibrosis
i.. primary thrombocythemia
j.. secondary aplastic anemia
k.. thrombotic thrombocytopenic purpura
For the most part, I assume some fairly innocent
illnesses (common and brief) can also cause
high platelets so I wouldn't panic by reading
the above sites. :)
For those wondering why some doctors test for CMV
and what that would mean, click on the link above
and you can get a brief explanation of it and Epstein
barr (which I believe a lot of NIDS kids are tested for.)
Here is the one on Epstein Barr:
http://webmd.lycos.com/content/asset/adam_test_ebv_antibodies
As for Eosinophils and what they are or what they are
used to detect:
http://webmd.lycos.com/content/asset/adam_test_eosinophils
I see that it says that allergic reactions (eczema) are
associated with it in addition to hayfever and other autoimmune diseases. As
for its usefulness in knowing..
I guess it is just one of many indicators of an abnormal
immune system and by itself it is not useful since it
is nonspecific in terms of indicating the cause.
One thing I noted in the above links was that certain
drugs can cause this to include antibiotics and
prednisone. It really gets me to wondering because
so many kids I have seen were on long term antibiotic
use or prednisone use.. It makes one wonder because
I have a concern about all the drugs we end up using
(even the SSRI antifungal antiviral route that NIDS uses.)
I would hate to set up this scenerio for my child:
Behavior A is present so I give drug A
Behavior B pops up so I give Drug B to stop it.
Behavior C pops up so I give drug C.
Makes one wonder what is normal, what is a problem,
and what is caused by treatment...
:) Now I bet I could open the Merck Manual and convince
myself that I have about 45 different disorders. LOL!
Erika

Re: Blood Tests and Immunology

2008-05-27 20:33:30

I found this funny link called Weird Richard's
Term Browser. It is a nice link:
http://members.edventures.com/custom/wr/terms/p/platelets/termbrowser.
html
Now what is says about Platelets:
Platelets
Platelets are tiny membrane-bound cell-like particles found in blood
that carry materials important for the formation of clots.
Losing blood can be a very serious problem. That is why organisms
come equipped with some self-sealing abilities. Platelets release
factors that initiate a series of reactions that cause the blood to
coagulate and form a clot.
Some people are born with a genetic condition called hemophilia.
People with hemophilia lack a platelet factor required for clotting.
A simple cut can lead to major blood loss for them. This is a
recessive_allele found only on the X chromosomes. Because human males
have a Y chromosome and a single X chromosome, they need one copy of
the allele to become a hemophiliac. Human women, because they have
two X chromosomes, need to be homozygous and have two copies of the
hemophilia allele.
[end quote]
Now what do high platelets mean? (I am glad you asked this.
My son's counts have been normal but his original lab work
from 2 years ago showed this off)
another book I have said this:
Platelets also release a hormone serotin which causes the
blood vessels to contract, thus reducing blood flow.
Insufficiency of these can be from underproduction in bone
marrow or destruction of existing platelets. Thrombocytopenia
is RARE but can cause it and is caused by drugs (prednisone)
removal of spleen, or platelet transfusion.
That said, I still don't know what a high platelet value
would really mean. :) Guess I wil lhave to look in another
book. :)
Erika

Re: [NIDS] Blood Tests and Immunology

2008-05-27 16:27:38

Erika,
Thanks for the suggestions about the book and the website. I too am
interested in all of this.
I wish I had the answers to your questions. I hope someone posts a response.
My son's platelet count is generally high and so our his Eosinophils. I
believe our doctor said this could signal either an infection, allegies, or
yeast. I am wondering if this could signal a virus?
Tracy

Blood Tests and Immunology

2008-05-27 10:15:56

Okay, I thought we could, as a group, discuss
immunology. :) THat is if anyone is interested.
I am ashamed to say that I have been getting blood
test results done on my child every 6 weeks or so
and have failed to take the time to fully understand
what it all means. I am also a little surprised by
the number of posts I see where parents ask about
their child's blood test and receive little response
(at list online, I don't know about private.)
So, that said, I am looking up various things.
One book I suggest is the Harriet Lane Handbook
which gives normal values not just for adults but
for pediatric patients based on ages as well.
Another online resource I am finding useful is:
http://www.med.sc.edu:85/book/welcome.htm
Things I would like to know are:
MCV
MCH
LY
What are these things and what does it mean if the
values are high or low?
Things I learned that others might find interesting for
their own blood test reports (an epal of mine was
kind enough to look up this info for me)
Creatinine: Creatinine is "the chief waste product of the creatine produced
when energy is released from phosphocreatine, an energy-storing compound,
during
skeletal muscle metabolism and is directly proportional to the total muscle
mass," (pg. 224).
I would assume that a hypotonic child would have lower
values of this no?
Seg Neutrophils are a part of white blood cell groups.
Seg neutrophils for the average 10 yr old are listed as 1800-800 uL or 54%.
Seg neutrophils are the mature cells and they are increased in those with acute
infections, certain drugs like steroids, metabolic disorders,
allergies, and stress conditions like anger and anxiety (pg. 81).
So, during allergy season , is it possible that many kids
will have high ratios for this?
ALT is "alanine aminotransferase". Its an enzyme also known as glutamic
pyruci transaminase (GPT) that is primarily present in the liver (pg 714).
My question then is what does this do? What does
it mean if the values are off?
That said, I plan on looking up and researching more
about what all these blood test results are saying.
Anyone else just as confused as to what all these words
mean and why they are important? :)
One can't exactly sit down during a 20 minute phone
consult and go through all the words on the blood test
because.. well, then they would never get around to talking
about their child specifically. :)
Erika

Re: [NIDS] OFF TOPIC- the school district wants to video tape my son at school

2008-05-26 22:47:47

Trina...
First of all, if they videotape without your consent, they're in legal
trouble. If they show those videotapes to anyone without your permission,
they're in bigger trouble.
I agree that you cannot judge the success of a program in one videotaped
session. I know that the ABA clinic we work with would have a cow if our
school district suggested such a thing. We do videotaping every sixty days,
with real life conferences in between. Just the brouhaha associated with the
videotaping itself can send a whole classroom into a tailspin until the child
gets used to it.
I'd agree to periodic videotapes, the first to begin at the end of this
school year, with at least quarterly videotapes to begin next year before any
changes are made to your child's IEP in light of those videos.
Just thought from a mom who's been there one time too many, lol.
Good luck!

Re: [NIDS] Digest Number 739

2008-05-26 21:15:54

ack no!
This is Sharryl, Aimee and Lisa's job !! :o)
I just follow in their footsteps !!
I'm also just a mom to a NIDS kid and to a husband
who had GBS ...
Dr G's protocol of making a healthier
brain makes too much sense ....
I see it working slowly with Jacob ..
Yet I see other parents out there who have
no concept of what is happening with their kids.
Perhaps they haven't found a Dr to work with??
They've never had blood tests run .. yet are more than
willing to jump on secretin, chelation and IVIG.
I hear the parents at the ASA mtgs talk about their kids -
I ask what medical tests have been done... Most say
'nothing' or 'CAT scan ...'
I mention about NIDS and they ask me about meds...
I tell them and then they look at me like 'oh my gosh!
you're giving your kid what??!!'
I guess I'm too much of an analyst :o)
Bringing my work home with me ...
doris

Northcrest Dr. Marysville,

2008-05-26 09:12:07

Sievers adult 349 Springwood Ln. Marysville, OH 43040 642-7693
Tsievers@... Camile Burton 4700 Vine St. Huntsville, OH 43324
Lisa Mayberry son, Alan, elementary 14294 Southard Rd. Marysville, OH 43040
644-9401 Lisa Cordell son, elementary 18570 Easton Rd. Marysville, OH
43040 642-5128 HYPERLINK mailto:cordellx4@... cordellx4@...
Kathy Lyons son, Micheal, elementary 14220 Hinton Mill Rd. Marysville, OH

OFF TOPIC- the school district wants to video tape my son at school

2008-05-26 08:54:53

Hey there everyone,
Sorry to cross post. It is the heat of IEP season here in Nashville, as it is
probably elsewhere too. I am gearing up for World War III this year.
We do ABA, and have for four years. The district has, after much fighting,
been paying for a portion of it all of these years. As instructed by our ABA
company, the aide at our son's school has always been ABA trained and a member
of the home team. And as usual, each year, the district always tries to not let
us use "our" aide, and instead use a part time/as needed special ed assistant
from the district. As you can well imagine, I am absolutely not going to agree
to this.
Well, it is the last 6 weeks of school down here, and it it is only now that the
district personnel have been showing up to observe, request data from home,
request data from the ABA company, etc. Now, they are requesting permission to
go in and video tape my son at school. Let me reinterate, it is the last month
of school. Where have they been for the last 8 months? Don't get me wrong,
someone comes every week to "observe" and make notes. But now, they are sending
someone else, higher up on the totem pole, to make all of the last minute
demands.
To me, it seems, that an end of the school year video would not be objective or
reflective of the whole years work. If they were trying to be fair, they should
have been making video each week or month all along the year. Am I off base
here? Am I just being uncooperative? I tend to be a hot head, so someone share
some insight here.
Trina

e mail address

2008-05-26 06:10:27

I am looking to locate the e amil for cynthia who volunteered to ehlp on the
phone. the e amil she gave me is being rejected. Thanks

candida test results

2008-05-26 01:18:36

Hi I just received the results of my son's candida
titers and I was wondering if anyone could comment
about them. We are planning to see Dr. Goldberg in
June but I know several of you have been through this
already. Any comment would be appreciated:
IGG,serum 866 ref. 518-1447
IGA 169 H 23-137
IGM 102 43-198
Candida Albicans AB,ID negative
Thanks, Kathy

Re: [NIDS] Candida

2008-05-25 18:05:30

Hi,
I just received my son's candida titers test and I was
wondering if anyone could comment on them. I am
planning to see Dr. Goldberg in June but I was hoping
someone might be able to help with these...any
comments would be appreciated.
IGG serum 866 ref. 518-1447
IGA 169 H 23-137
IGM 102 43-198
Candida Albicans AB,ID negative
Thanks, Kathy

Re: Digest Number 728

2008-05-25 07:09:49

***There is no such thing as a non toxic drug. Kathy NIDS-Northern
New York***
Kathy,
Your statement just isn't true. Both Nystatin and Peptide-T are non-
toxic according to FDA testing requirements. If you mean to say
there is no such thing as a drug without side-effects at any dose,
that might be different.
FWIW
Jeff

Illinois meeting

2008-05-25 06:09:26

Hi to the other Illinois NIDS people. I can meet on the 12th (first choice) or
the 19th or another day. Please keep me posted! I'm really looking forward to
spending time together!
I'd also like to say that I think it's a great idea to get together and I don't
see why we have to apologize or explain ourselves to others. We have enough
hurdles to deal with. We certainly don't need to put hurdles in each other's
way. I could care less who meets when and where and for what reason. Just do
what works for you.
-Noelle

Re: [NIDS] Dr Goldberg's protocol

2008-05-24 14:47:10

Doris,
Are you interested in starting a Maryland Chapter or are you jumping in to
the DC Chapter? Kathy NIDS-Northern New York

Illinois meeting

2008-05-24 13:51:44

Michelle,
Have I sent you anything yet? I didn't annotate anything on my list and I
just cannot remember! Kathy

Illinois meeting

2008-05-24 13:49:08

Eric,
There are some specific goals that the chapters are trying to meet and they
may are may not be welcomed by other organizations. The first would be to
support the mission statement of the NIDS Research Institute the second would
be regionally dependent for example we have started a NIDS clinic here, are
working on a socialization group for our children, and are raising money for
the drug trials. Our NIDS chapter actually grew out of a local support group.
To be honest we have not met as a support group in a long time. My child is
so much better than she was, thanks to the NIDS protocol, and we have no
reason to think that the other children will not respond the same way so
right now there is just no time! Am I explaining myself at all well? Kathy
NIDS-Northern New York chapter

Re: [NIDS] Translation of required blood test results

2008-05-24 02:38:15

Mary, As Dr. Goldberg would be the first to tell you, 99.9% of these children
fall within the definition of NIDS. Our son's labwork came back normal
except for the later results (candida and HHV-6). We actually saw Dr.
Goldberg before these test results were even available (they take 4-6 weeks).
We have seen amazing improvement on the nizoral. He still has a long way to
go but we are extremely pleased with the results. Hang in there...sometimes
normal results are GOOD. Good example would be liver enzymes. You WANT
those to be normal! Keep us posted on the results and progress!! Linda

Illinois meeting

2008-05-23 20:23:01

Eric,
I hope we haven't been misleading anyone. As a parent of a child who does
see Dr. Goldberg, I feel at times very isolated because I have no one to
discuss things with that Dr. Goldberg prescribes and due to the fact that
progress is slow and that we need to hang in there, we thought it would be
nice to share our experiences with each other. We are not trying to create a
seperate group at all, and I know that if there are any parents who are
interested in the NIDS protocol but yet are not patients of Dr. G, are still
welcome to come. I think we all feel isolated and want to come together.
Sure, it would be great to have Dr. G come out to the Chicago area and
speak. I went to the Des Moines conference and it was great!! Take care!
Kathy

Re: [NIDS] EPD

2008-05-23 19:03:03

Michelle,
EPD is enzyme potentiated desensitization. It is an
allergy treatment that began in England in 1960. New
patients can not get EPD in the US because the FDA is
currently conducting a study. I had gotten a couple
of pretty negative responses from people who have
tried it but I try to keep an open mind because
dealing with the limited diet etc. is extremely
difficult. Kathy

Dr Goldberg's protocol

2008-05-23 08:07:41

My son Jacob has been seeing Dr G for not quite a year.
This year has been very interesting, with many ups and downs.
But the changes has been for the better. We aren't there yet
but we're heading in the right direction.
I have a coworker who has 2 autistic sons.
He 'agrees' with Dr G but doesn't totally agree with the protocol.
His one son is a little more autistic than the other, often up all nite,
very agressive and stimmy and very anxious.
I told him that Jacob's sleep patterns normalized after
going on celexa (an SSRI). SSRIs work on the serontonin which
affects melatonin ...
Norm decided to ask his son's pediatrician to place his son
on an SSRI in hopes it would regulate his sleep.
Norm didn't take into consideration that things must be 'in place'
in order for the SSRI to have optimum affect.
Jacob is also on an antiviral and antifungal.
Well,needless to say, the outcome wasn't the same.
I'm still working on Norm :o) I would like to see his sons
patients of Dr G's one day ...
Dr G is always very conscious of the meds the kids are on and
what they are doing to them. When Jacob bounced on prozac,
he immed took him off. As the 6 month marker on nizoral approached,
he told us we'd be switching to diflucan ....
We ordered tapes from his talk in TX - they arrived this week.
For anyone unfamiliar with Dr G or would just like to hear him talk about NIDS,
I think these tapes are an inexpensive investment $40 for 3 tapes.
The ordering information can be found on his website
http://www.neuroimmunedr. com
There is alot of incorrect information circulating about NIDS and Dr G,
esp on the GFCFKids. For those of us who know him
and who have kids who are patients, it's our job to spread
the word and correct the incorrect.
Enjoy!
doris
millersville MD

Translation of required blood test results

2008-05-23 06:39:49

Hi, I just got back the results of blood tests done on my son. I had the
first section of the recommended tests done. The results all came back
within range. Does that mean he's not a candidate for NIDS or are there
certain numbers Dr. Goldberg is looking for in the results. Does anyone
know? Thanks
Mary

Illinois meeting

2008-05-22 22:46:00

Eric, over a year ago there was an attempt made to unite many of the groups
together. The proposal that was sent to many of them is on the nids
website. Evidently the interest just wasn't there.
http://www.nids.net/consortium.htm
We need to have credible mainstream science if we ever hope to make a
difference for our children. The plan to do that has been developed and we
need to raise the funds to put that in motion. It becomes hard when so many
want to rely on tests and theories that lack scientific credibility. There
are so many things available online (from real science) that discuss how the
body works and doesn't work, what is credible, what isn't. Hopefully parents
will begin to realize the difference and we can all work towards a common
goal.
Cheryl

Illinois meeting

2008-05-22 11:52:28

Michelle,
I live near Midway airport. I know I-90, but I'm not sure where route 31 comes
in. What town is it, so I could look on my atlas. Thanks Kathy

Illinois meeting

2008-05-22 11:29:34

Hi Michelle!
I am so glad you found a place. I had tried the Kane County Chronicle
building without a response. Actually, sounds like Judson College would be
great being right off I90. I also have a parent who has a friend who
attended the Iowa conference and she would like to meet with us. Her child
is not a patient of Dr. G but she would like more info. I guess Dr. G stayed
till 8pm that evening at the conference and continued to answer parent's
questions. We had to leave at 5 so we missed it all. I am looking forward
to meeting with everyone. By the way, we are off the Prozac and started
Paxil, my speech therapist yesterday said that Colin was the most alert,
reactive etc that she has ever seen him. I also had comments from other
parents in the waiting room. I hope we continue this way!!! The date that
would work best for me is the 12th or even a Sunday would be ok. I work on
May 5th and Colin has an OT consult May 19th. Looking forward to it!!
Kathy

Re: [NIDS] Digest Number 728

2008-05-21 20:55:30

Please understand, I am NOT trying to be obnoxious or
inflammatory here. I am just trying to get
information. How would those of you who have
experience with this protocol respond to the following
which was sent to me by an acqaintance "in the
trenches"?
"HI Mary - Yes, I'm familiar with Goldberg. While I
agree w/ the idea of of neuroimmune (obviously), I
don't agree with his way of doing things. Every kid
gets the same treatment - antiviral after antiviral
and SSRIs. I know a few people's children who were on
antivirals for MONTHS (
The guy refused to admit that they did not have viral
infections, just upped dose or changed antiviral.
Some kids have had bone marrow suppression from the
long use of antivirals. I don't understand why he has
kids get all this testing done only to do the exact
same thing with all of them and basically ignore test
results. I think his wife had chronic fatigue and it
ended up that she had viral infection, so he applies
it to every kid now. He also is trying to raise
$750,000 for his "research"! - which is all just trial
and error."

Schizophrenia/Virus study

2008-05-21 18:56:35

Not specific to NIDS, but a story I found interesting. There is a story on
MSNBC's website about a study that found a link between schizophrenia and a
virus. The opening paragraph summarizes by saying "The finding suggests
antiviral drugs could play a role in preventing the disorder."
Here is the link to the story:
http://www.msnbc.com/news/556894.asp
Vicki

Illinois meeting

2008-05-21 18:47:48

I do have a question for you who are planning on starting a NIDS chapter
anywhere where there is already a support group of some kind in
existence...why? Why start another group? Why look for another place to
meet? Why create new stationery? Why work on raising funds for another group?
Don't you think it would be more productive to be part of an already active
group? I know I would certainly welcome anyone who wanted to discuss the NIDS
protocol and Dr. Goldberg's work at any of my ASA chapter meetings. Just as I
am happy to have GFCF diet gurus, ABA'ers, MMR and anti-vaccine parents,
Secretin proponents, CAn members, NAAR members etc - I would love to have
more discussion about NIDS at my meetings. Why segregate yourselves from
others? Just because you have a specific concern or plan of action, doesn't
mean you should abandon contact with others regarding your school districts,
special rec. service areas, local professionals etc. I urge you to contact
your local ASA Chapter and ask to have a NIDS discussion night - I am sure
they would be happy to schedule one for you and then you can also bring up
NIDS issues during regular meetings. Everyone loses when a splinter group
forms...we all have knowledge to share with each other...
By the way...I have been thinking of inviting Dr. Goldberg to do a conference
in the Chicagoland area...perhaps also inviting the Pfeiffer clinic people
and maybe someone like Amy Holmes. Would that interest anyone out there? Let
me know so I can bring it up to the ASI board at our next meeting on the
21st...
Eric L. Smith
Autism Society of America-Northeast Illinis Chapter President
Autism Society of Illinois-Treasurer

Illinois meeting

2008-05-21 09:18:21

Michele P,
Are you thinking about starting a NIDS chapter in Illinois? If so please let
me know and I will send you information about that! Kathy NIDS Northern NY
Chapter

volunteers

2008-05-20 20:43:45

All who have volunteered to help with the NIDS 800 number will be contacted
shortly about organizing. In the meantime if there is anyone else who wanted to
help with that (taking calls from the 800 number line and returning them or
referring them) NOW is the time to let me know. I think if we have enough
people it won't be very much work.
In the meantime NIDS needs someone to follow up on the question of on-line
donations. I have a bit of information to get you started. I am not sure what
exactly will be involved in organizing it, but we need someone serious and
efficient to take over this task. There a few parents in the NIDS group who
have done alot of work and it would be nice if we could spread it around a bit.
Thanks! Lisa Dugua

Starting a NIDS chapter.

2008-05-20 14:59:33

Well I suppose that means you DO know her!!!!!!!Kathy

Starting a NIDS chapter.

2008-05-20 14:38:07

Kathy,
My mother is Rosemarie Covucci and she is planning on
doing all she could to help. (She has been a blessing for
me throughout all this.) - My daughter and I greatly
depend upon her.
Thanks,
Michele Davies

Starting a NIDS chapter.

2008-05-20 09:36:11

Kathy - Could I have a copy of whatever you draw up. I am interested in
starting a NIDS Chapter in Michigan and have received some information, but
it was a little intimidating. Right now we are trying to get an extension
of the Michigan Administrative Rules for Special Education. It took them 7
years to revise these rules and now they have provided only SIX WEEKS to
respond. After that time they will be voted on and possibly passed into
law. Some of those changes include eliminating parapros, eliminating
teacher consultants, having the intermediate school district decide on what
is best for their district instead of using state mandates, etc, etc... The
good (HA!) Governor Engler is trying to pull a fast one on our kids.
Basically, he feels that all children can be just mainstreamed, no problem.
Anyway, that is the priority right now, but so many people have NIDS
questions for me - it would be nice to start something organized. Just not
this week! Anyway, I would appreciate any information you can send me.
ginger
P.S. Anyone in Michigan that would like a form letter to send to the Joint
Committee on Administrative Rules asking for an extension, please e-mail me
privately. Thank you.
rfenech@...

Starting a NIDS chapter.

2008-05-20 06:13:28

Michelle is Rosemary Covucci in the New York area? She might be interested in
getting on board for the southern New York Chapter! Kathy NIDS- Northern New
York

Starting a NIDS chapter.

2008-05-19 21:03:07

I am working on a list of suggestions to make starting a chapter perhaps a
little easier. Will send as soon as I get it done which should be today! Kathy

Endogenous Retroviruses in Pathogenesis of Autoimmunity

2008-05-19 15:43:30

Editorial J Rheumatol vol 28, no 3, March 2001.
Endogenous Retroviruses in Pathogenesis of Autoimmunity
Viral infections often lead to inflammatory syndromes where arthralgias or
arthritis may represent a major manifestation.
Considerable evidence indicates that viruses may also be involved in
pathogenesis of autoimmune rheumatic diseases. Based on the hypothesis that
molecular interactions between the host genome and environmental factors are
critical for autoimmunity, endogenous retroviruses (ERV) are of particular
importance.
They belong to the larger family of retrotransposable elements that make up
as much as 40% of the human genome. ERV may have originated from exogenous
retroviruses that integrated into the genome and became trapped owing to
mutations of essential genes.
Human ERV have generally been found to be defective proviruses. They
represent a large reservoir of viral genes that may be activated by
mutations caused by radiation or chemicals, or recombination with exogenous
retroviruses.
While exogenous retroviruses are infectious, with a replication cycle that
requires integration of proviral DNA into host cell DNA, ERV are transmitted
genetically in a classical mendelian fashion through the germline as
proviral DNA. Expression of ERV can influence the outcome of infections in
different ways both beneficial and detrimental to the host. These include
provision of genes for recombination with exogenous viruses, interference
with virion assembly, blocking cellular receptors for viral entry, and
modulation of immune responses to exogenous viruses.
ERV may lead to autoimmunity directly, by encoding autoantigens, or
indirectly, by affecting the expression of genes regulating immune responses
and tolerance.
The entire editorial can be found at:
http://www.cfs.inform.dk/Rheumatologi/erv.autoimmun01.html

Re: [NIDS] Viruses May Cause Schizophrenia..

2008-05-19 03:24:09

This is a slightly different version of the article. I thought this one may
also be of interest. It mentions the possibility of treating herpes viruses
to suppress the retroviral transcription.
Cheryl
Retroviruses Implicated in the Pathogenesis of Schizophrenia

Viruses May Cause Schizophrenia..

2008-05-18 21:04:24

Virus May Contribute to Some Schizophrenia Cases
By Will Dunham
Reuters
WASHINGTON (April 9) - Bits of genetic code resembling viral genes were found
in the cerebrospinal fluid and brain tissue of schizophrenics in a study
released on Monday that provides compelling evidence a virus may contribute
to some cases of the devastating mental illness.
A research team led by a Johns Hopkins School of Medicine scientist examined
a group of 35 Germans who had been diagnosed with schizophrenia. The
researchers found the molecular "footprint" of a retrovirus in the
cerebrospinal fluid of 29 percent of subjects with newly diagnosed acute
schizophrenia. It also was found in 7 percent of those with a chronic form of
the disease.
In contrast, the retroviral genes were not present in the brains or
cerebrospinal fluid of healthy people examined or people with other types of
neurological illnesses.
"It certainly suggests that viruses are involved in the process," lead
researcher Dr. Robert Yolken said in an interview. "At this point, whether
the virus is causing some of the cases of schizophrenia or whether it's
activated during the process, we don't actually know."
Essentially, scientists found the virus at the scene of the crime, but are
struggling to figure out whether it is the perpetrator or an innocent
bystander. If viruses are found to be a cause of schizophrenia, Yolken said
antiviral therapies could prove effective in treating a disorder that
condemns about 1 percent of people to a world of delusions.
The researchers said the greater frequency of retroviral genes found in
patients with newly diagnosed instead of chronic schizophrenia hinted that
the activation of these genes may contribute to the onset and initial
progression of the disease in some individuals. The study appears in the
Proceedings of the National Academy of Sciences.
Schizophrenia is a group of psychotic disorders characterized by delusionary
thinking, hallucinations and bizarre physical behavior. Changes in brain
function that characterize schizophrenia have been identified, but its exact
causes are unknown.
GENETIC AND ENVIRONMENTAL FACTORS
The "footprint" actually is retroviral RNA created by the active expression
of an endogenous retrovirus in the "W" family of endogenous retroviruses
(HERV-W), the researchers said.
Previous research suggested that activation of the viruses and the onset of
certain forms of schizophrenia are caused by both genetic and environmental
factors. The new study points to the HERV-W-like retrovirus as a prime
candidate for the environmental component of some schizophrenia cases.
Retroviruses can cause diseases such as AIDS and leukemia. The human genome
naturally harbors many retroviral genes whose activation has been linked to a
number of chronic diseases, including multiple sclerosis, autoimmune
arthritis and diabetes.
Yolken said scientists have a number of clinical trials in the planning
stages to look at whether antiviral medications would alter the course of
schizophrenia. "I think it's certainly a very fertile area for study," he
said.
Scientists at the University of Heidelberg contributed to the research.
A separate study appearing in the same journal on Monday found that five
genes associated with the formation and maintenance of myelin sheaths, which
are critical for efficient signal transmission along nerve-cell fibers called
axons, tend to be "turned off" in schizophrenics. The findings suggest a
specific functional impairment in the disease.
Reuters 11:18 04-09-01
Copyright 2001 Reuters Limited. All rights reserved. Republication or
redistribution of Reuters content, including by framing or similar means, is
expressly prohibited without the prior written consent of Reuters. Reuters
shall not be liable for any errors or delays in the content, or for any
actions taken in reliance thereon. All active hyperlinks have been inserted
by AOL.

Re: Starting a NIDS chapter.

2008-05-18 19:00:42

Dear Kathy,
I am interested in starting a chapter for NJ/NY metro area.
David gave me Darlene Romani's Email address from LI.
Please let me know what we need to do to get started.
Thanks, Michele

PBS show on ADHD and meds

2008-05-18 18:44:00

Today, millions of American children are being prescribed powerful
behavior modifying drugs such as Ritalin, Prozac, Paxil, and Zoloft.
On Tuesday, April 10, at 10 p.m. on PBS (check local listings)
FRONTLINE presents "Medicating Kids," an investigation of the rapidly
growing use of psychoactive drugs by children and the challenges of
parenting and schooling in a world of high stress and increasing
family disintegration. Through an intimate portrait of several
families in an American suburb, the film explores how medication has
increasingly become an integral part of caring for our kids. The
documentary and the companion Web site also examine the role of
doctors, educators, pharmaceutical makers, and insurance companies in
advancing this trend.
A preview site is now available at
www.pbs.org/frontline/shows/medicating/. In addition to a film
synopsis, this advance site gives visitors a special sneak preview
with streaming video from the film; background interviews with
experts on every side of the debate on such issues as "Does AD/HD
Exist?" "The Ritalin Explosion" and "The Business of AD/HD"; profiles
of the four families featured in the documentary; and an interview
with the producers.
The final companion Web site will launch on April 10 and will include
more in-depth research into ADHD, a viewer's guide with frequently
asked questions and resources, streaming video of the full FRONTLINE
film, and much more.
ADDHelpline is honored that PBS has chosen to include their website
in the resources section of their site.
http://www.addhelpline.org

Re: [NIDS] Thanks for replys to Australian Doctor Search

2008-05-18 07:16:00

Cherie,
Have you tried to find someone that would be interested in going to the
website? We will be opening other NIDS clinics in the US. A training program
is in the works. Perhaps you have someone in Australian willing to be
trained? Perhaps you have a group of parents willing to raise money to fund a
trip to the US for the training? Kathy NIDS Northern New York Chapter

Re: [NIDS] any NIDS doctors in Dallas?

2008-05-17 23:16:42

I forwarded your question to Julie Ehmling who is in Texas and she can tell
you what they are doing there. Kathy NIDS Northern new York

Repligen needs your support for secretin please.......

2008-05-17 20:56:01

Please, if secretin has helped your child, respond to the below message
please......
Many thanks........
Michelle Guppy
*************
Repligen needs your support........
Whether or not you have a child who has benefitted from secretin treatment,
Repligen is asking you to step forward now and decry the effort by Reuters
to
undermine parents as suitable judges of their autistic child's response to
drug treatment.
As many of you are aware, Repligen announced preliminary findings in their
multi-site, phase 2 secretin trial yesterday, April 4, '01. This was
followed by a very contradictory response from the financial world with Dow
reporting from the favorable viewpoint (parents correctly identified drug
treated children over placebo treated) and Reuters chosing to paint a very
negative "failure to meet end point" picture. Like many other folks, we
were
stunned by this warped portrayal of what we view as a very successful and
FIRST EVER Phase 2 clinical trial in autism. As some have already noted,
Repligen has taken a very undeserved hit on Wall St. because of this
irresponsible reporting by Reuters.
Please take a moment to respond to this unfair and arbitrary judgement. We
are asking anyone who supports research aimed at therapeutic drug
development
for this population to take a moment to write a brief e-mail to the
following editors at Reuters:
Martin.Howell@... and Howard.Luxenberg@...
That's each name with a period separating 1st from last name followed by the
@ sign and immediately thereafter, Reuters.com. No spaces.
Your contribution to mounting this timely response is greatly appreciated.
Nancy LeGendre

any NIDS doctors in Dallas?

2008-05-17 13:02:53

Where can I find a doctor familiar with NIDS around the
Dallas, Tx area?..

Re: [NIDS] Physician Referral

2008-05-17 07:45:00

Janet where are you located?

Thanks for replys to Australian Doctor Search

2008-05-17 02:47:56

Thank you for replying. I have called Dr. Goldberg's office and asked if there
is any doctors over here and of course their reply was no. At this point in time
we can not afford the trip over to America as well as the consultations and
testing costs. I will continue the search but at this point in time we may have
to sit tight for a while, unfortunately.
Thanks
Cherie.

Re: [NIDS] Nizoral

2008-05-16 17:43:28

Diane - We originally started grinding meds and then placing the powder
between thin slices of Mocha Mix ice cream, with an immediate treat afterward
(swallow and you get jjelly bean!). After the first few days, our daughter
got the hang of it, and now takes her meds willingly (if not cheerfully) in
applesauce. You can tell it tastes awful, because she shudders, but it's part
of her routine and she always gets a tasty treat as a reward, to wash down
the taste as well. The first few days are going to be difficult, you just
can't give in. Think of it as a necessary evil, and you'll be surprised how
quickly your child will accept it. Goodluck!
Yvonne

Fwd: To all in Pinellas County, Florida

2008-05-16 12:29:39

I saw this on another list and thought I would forward it. I do not live in
Florida, but love the opportunity to defeat evil people.
Tracy
<<
TO ALL Pinellas County families with an autistic child:
A bunch of parents went to Tallahassee yesterday to lobby for the passing of
the autism insurance bill. We found out that the lady holding it up and
promising it would die is Leslie Waters of Largo. She is head of the
Insurance Committee (who worked for Allstate insurance for 22 years!).
Everyone who lives in her district NEEDS to write her a letter telling her
you are a voting constituent in her district and you want this bill passed
THIS SESSION or you will find someone else to fill her House seat in the next
election to help you get this bill passed.
Her address is
Capitol Office:
Room 214 House Office Building, 402 S. Monroe St., Tallahassee, FL
32399-1300
Phone (850)488-6197

District Office:
Suite 107
11350 66th Street North
Largo, FL
33773-5524
(727)545-6421
(727)545-6422
SUNCOM: 513-5383
PLEASE PLEASE PLEASE Do this - for all our children. We could not sway this
woman and were told the ONLY people who had a shot were HER constituents in
her district. Please send a letter to her today!

Nizoral

2008-05-16 12:08:32

Hi everyone.... I was wondering if anybody had any sneaky tricks up
there sleeves to gets their kids to take Nizoral (anti-fungal). I
crushed up the tablets and it was so strong tasting that he threw up
so then I had it compounded to liquid (grape flavor) and it still has
a very harsh after taste, and again he threw it up. I've been trying
it now for over a week with no sucess. His food variety consists of
chicken nuggets, french fries, cheese balls, crackers and
marshmallows. That's it. I can't hide it any of those. Anyway, any
suggetions would be greatly appreciated. Thanks in advance.
Sincerely,
Diane B.

International Meeting For Autism Research

2008-05-15 23:01:38

IMFAR
International Meeting For Autism Research
November 9 - 10, 2001
San Diego, California
FIRST ANNOUNCEMENT
Dear Colleagues
We are pleased to announce that plans are now under way for the first annual
International Meeting For Autism Research (IMFAR). The meeting, a satellite
event of the Society for Neuroscience Meeting, will take place in San Diego,
California on November 910, 2001.
As currently conceived, IMFAR is a two-day scientific meeting comprised of
keynote presentations as well as slide and posters sessions All types of
research, from molecular biology, to neuropsychology, to treatment research
are to be represented at the meeting. Funding for this meeting is
underwritten collaboratively by Cure Autism Now, the M.I.N.D. Institute and
the National Alliance for Autism Research.
A Call for Abstracts will be issued shortly. The Program Committee will soon
begin the selection of keynote presenters and to organize the abstracts into
cohesive sessions.
Please reserve the dates of this important meeting. We would greatly
appreciate your assistance with the distribution of this announcement to all
of your colleagues who have an interest in autism research.
For more information, please email to barbara.david@....
With kind regards,
IMFAR Planning Committee
* * *
Program Committee:
David Amaral, Ph.D
Margarel Bauman, M.D.
Diane Chugani, Ph.D.
Edwin Cook, Jr., M.D.
Geraldine Dawson, Ph.D.
Eric Fombonne, M.D.
Daniel Geschwind, M.D., Ph.D.
Francesca Happé, Ph.D.
Tom Insel, M.D.
Ian Lipkin, M.D.
Catherine Lord, Ph.D.
Michael Merzenich, Ph.D.
Karin Nelson, M.D.
Sally Ozonoff, Ph.D.
Margaret Pericak-Vance, Ph.D.
Joe Piven, M.D.
Sally Rogers, Ph.D.
Robert Schultz, Ph.D.
Marian Sigman, Ph.D.
Helen Tager-Flusberg, Ph.D.
Christopher Walsh, M.D., Ph.D.
Robert Yolken, M.D.

Re: [NIDS] EMLA cream

2008-05-15 21:11:37

I heard from our hospital nurse that EMLA cream should be put on 1/2 hour
before the blood draw; that it starts to lose effectiveness after 45 minutes.
Anyone able to verify this or not?
Thanks,
Yvonne

Re: Debbie in California

2008-05-15 18:48:46

Debbie,
Regarding your question about EMLA cream, I have never heard of it
interfering with lab results and I recommend it. My husband is a CRNA and
uses it often to do IV sticks and blood draws on kids at work. We have
used it on our son (2.5 yrs) for his lab work, also with great results. He
still feels a pinch but nothing like getting stuck without it. We obtained
the script for it from our pediatrician and you need to put it on at least 1
hour prior to the lab draw. Smear a small amount on the inside of both
arms where they will draw the blood (you never know which arm they will
use), and wrap it with plastic wrap (loose). We practiced this many times
on a doll with our son and then on him, at home. He sang the ABC song while
they were drawing blood and although he had tears in his eyes, he wasn't
struggling, etc. and I attribute a lot of that to the EMLA cream. When the
skin is wiped for the blood draw, the cream is wiped off also.
Good Luck.
Anne
"Second question is:

Re: [NIDS] meeting in Ilinois

2008-05-15 03:50:20

Hi Noelle,
It would be great to meet. E-mail me personally, and we can figure it out.
Thanks, Kathy

Re: [NIDS] insurance issues

2008-05-15 02:34:26

Jennifer -
We have our pediatrician write the referral for the tests so that they
are covered by our PPO insurance (BC/BS).
Michelle
On Mon, 02 Apr 2001 14:59:21 -0000 "lj smith" <yyzbytor@...

CFS/FM FYI

2008-05-14 21:39:57

Subj: CANADIAN EXPERT CONSENSUS PANELS MYALGIC ENCEPHALOMYELITIS/CHRONIC
FATIGUE SYNDROME AND FIBROMYALGIA - MARCH 3OTH TO APRIL 1, 2001

Re: [NIDS] Rolipram and autoimmune diseases

2008-05-14 10:15:08

I found a few things that discuss the mechanisms of this medication. I'm
just a parent with no medical degree, so bear that in mind.
What I can tell you is that the SSRI's and other meds do have effects on
cytokines. This med could possibly be a piece that is beneficial, depending
on whether a person is type 1 or type 2. From my understanding, type 1
(example PANDAS) seems to be more relapsing, remitting. Type 2 (example
Schizophrenia) is probably the category that autism falls into. I know that
in CFS most seem to be type 2. A major downside to this med (according the
the last abstract) is that it appears to induce vomiting.
To me it is still better to address the things that contribute to the
inflammation. At least until we have access to the immune profiles
(cytokines) and hopefully many immune modulators.
Cheryl (1raptor)
Protective effect of Rolipram in experimental autoimmune neuritis:
protection is associated with down-regulation of IFN-gamma and inflammatory
chemokines as well as up-regulation of IL-4 in peripheral nervous system.
Autoimmunity 2000 Sep;32(2):93-9 (ISSN: 0891-6934)
Abbas N; Zou LP; Pelidou SH; Winblad B; Zhu J [Find other articles with
these Authors]
Dept. of Clinical Neuroscience, Karolinska Institute, Huddinge Hospital,
Stockholm, Sweden.
Rolipram, a phosphodiesterase type 4 inhibitor, is reported to have
anti-inflammatory effects. It can markedly downregulate antigen-driven T
cell proliferation and suppress TNF-(alpha and TNF-beta production in vitro
and in vivo, which have led to its use in the treatment of a number of
autoimmune disorders including experimental autoimmune encephalomyelitis
(EAE) and experimental autoimmune neuritis (EAN). EAN is a CD4+ T
cell-mediated demyelinating autoimmune disease of peripheral nervous system
(PNS) that represents an animal model for the study of the
immunopathogenesis and immunotherapy of Guillain-Barre syndrome (GBS) in
human. In the previous study, we reported that suppression of EAN by
Rolipram was associated with down-regulated myelin antigen-induced T cell
responses as well as downregulated IFN-gamma and TNF-alpha production. Here
we report that EAN induced in Lewis rats by inoculation with the PNS P2
protein peptide 57-81 and Freund's complete adjuvant (FCA), was strongly
suppressed by Rolipram administered twice daily intraperitoneally from day 9
post immunization (p.i.), i.e. after onset of clinical EAN to day 18 p.i.
This clinical effect was associated with dose-dependent down-regulated
production of IFN-gamma and the chemokines macrophage inflammatory protein-1
alpha (MIP-1 alpha, MIP-2 and monocyte chemotactic protein-1(MCP-1) as well
as up-regulated IL-4 production in sciatic nerve sections from
Rolipram-treated EAN rats at maximum of clinical EAN, i.e. on day 14 p.i..
These findings suggest that Rolipram may be useful in certain T
cell-dependent autoimmune diseases and inflammatory neuropathies. These
observations call for further studies on the potential role of Rolipram in
the treatment of autoimmune diseases.
interleukin-4
<cytokine
that promotes antibody production by causing proliferation and
differentiation of B-cells.
interferon type I
<chemical
in response to viruses or interferon inducers other than mitogens, antigens,
or allo-antigens. They include alpha- and beta-interferons (interferon-alpha
and interferon-beta).
Pharmacological action: antineoplastic agent, antiviral agents.
interferon type II
<chemical
stimulated lymphocytes. It is structurally different from type I interferon
(interferon type I) and its major activity is immunoregulation. It has been
implicated in the expression of class II histocompatibility antigens in
cells that do not normally produce them, leading to autoimmune disease.
Pharmacological action: antineoplastic agent, antiviral agents.
Chemical name: Interferon gamma (human lymphocyte protein moiety reduced)
Tumour Necrosis Factor
<cytokine
of animals exposed to bacterial lipopolysaccharide or Bacille Calmette
Guerin.
Preferentially kills tumour cells in vivo and in vitro, causes necrosis of
certain transplanted tumours in mice and inhibits experimental metastases.
Human Tumour Necrosis factor alpha is a protein of 157 amino acids and has a
wide range of pro inflammatory actions. Usually considered a cytokine.
Synonym: cachectin.
Acronym: TNF
Therapeutic potential of phosphodiesterase-4 and -3 inhibitors in
Th1-mediated autoimmune diseases.
J Immunol 2000 Jan 15;164(2):1117-24 (ISSN: 0022-1767)
Bielekova B; Lincoln A; McFarland H; Martin R [Find other articles with
these Authors]
Neuroimmunology Branch, National Institute of Neurological Disorders and
Stroke, National Institutes of Health, Bethesda, MD 20892, USA.
Phosphodiesterase-4 (PDE4) inhibitors have the potential to modulate immune
responses from the Th1 toward the Th2 phenotype and are considered candidate
therapies for Th1-mediated autoimmune disorders. However, depending on the
model and cell types employed, studies of atopic individuals have come to
the opposite conclusion, i.e., that PDE inhibitors may be beneficial in
asthma. Using in vitro immunopharmacologic techniques we analyzed the
effects of PDE4 and PDE3 inhibitors on human immune cells to address these
discrepancies and broaden our understanding of their mechanism of action.
Our results indicate that PDE inhibitors have complex inhibitory effects
within in vivo achievable concentration ranges on Th1-mediated immunity,
whereas Th2-mediated responses are mostly unaffected or enhanced. The Th2
skewing of the developing immune response is explained by the effects of PDE
inhibitors on several factors contributing to T cell priming: the cytokine
milieu; the type of costimulatory signal, i.e., up-regulation of CD86 and
down-regulation of CD80; and the Ag avidity. The combination of PDE4 and
PDE3 inhibitors expresses synergistic effects and may broaden the
therapeutic window. Finally, we observed a differential sensitivity to PDE
inhibition in autoreactive vs foreign Ag-specific T cells and cells derived
from multiple sclerosis patients vs those derived from healthy donors. This
suggests that PDE inhibition weakens the strength of the T cell stimulus and
corrects the underlying disease-associated cytokine skew in T cell-mediated
autoimmune disorders. These new findings broaden the understanding of the
immunomodulatory actions of PDE inhibitors and underscore their promising
drug profile for the treatment of autoimmune disorders.
The phosphodiesterase inhibitors pentoxifylline and rolipram suppress
macrophage activation and nitric oxide production in vitro and in vivo.
Clin Immunol 2001 Feb;98(2):272-9 (ISSN: 1521-6616)
Beshay E; Croze F; Prud'homme GJ [Find other articles with these Authors]
The Department of Pathology, McGill University, 3775 University Street,
Montreal, Quebec, H3A 2B4, Canada.
We studied the effects of the phosphodiesterase inhibitors pentoxifylline
(PTX) and rolipram (ROL) on nitric oxide (NO) production by macrophages and
correlated this with cellular cAMP levels. The RAW 264.7 cell line or mouse
peritoneal macrophages were activated with lipopolysaccharide (LPS) and
interferon gamma (IFNgamma), with or without ROL, PTX, cAMP analogues, or
Forskolin. In vivo, peritoneal macrophages were stimulated with
staphylococcal enterotoxin B with or without administration of ROL. Nitrite
levels in culture and the total cellular cAMP levels were measured. ROL and
PTX suppressed NO production of LPS/IFNgamma-stimulated macrophages. ROL
(IC(50) = 68-74 microM) was about 40 times more potent than PTX (IC(50) =
2.4-2.9 mM). The suppression paralleled increased total cellular cAMP level
(EC(50) = 68-72 microM) and was mimicked by other cAMP elevating agents. ROL
and PTX suppressed inducible NO synthase at the mRNA level. The inhibition
of NO production of macrophages by ROL or PTX could be beneficial in
NO-mediated inflammatory and/or autoimmune disorders. Copyright 2000
Academic Press.
Language: English
MEDLINE Indexing Date: 200102
Publication Type: Journal Article
PreMedline Identifier: 0011161985
Unique NLM Identifier: 21112172
Journal Code: IM
Inflammation contributes to the postponed ischemic neuronal damage following
treatment with a glutamate antagonist in rats.
Neurosci Lett 2001 Feb 2;298(2):103-6 (ISSN: 0304-3940)
Block F; Bozdag I; Nolden-Koch M [Find other articles with these Authors]
Department of Neurology RWTH Aachen, Pauwelsstrasse 30, D-52057 Aachen,
Germany. fblock@....
The present study examined whether anti-inflammatory drugs can ameliorate
the postponed neuronal damage which has been observed following treatment of
ischemic animals with 2,3-dihydro-6-nitro-7-sulfamoyl-benz (F) quinoxaline
(NBQX). Global cerebral ischemia was induced in male Wistar rats by
four-vessel occlusion for 20 min. The animals were treated either with NBQX,
rolipram, doxycycline or a combination of NBQX and rolipram or doxycycline.
Four weeks after ischemia neuronal damage in the hippocampus was assessed.
Treatment with NBQX or doxycycline did not affect ischemic neuronal damage
whereas rolipram alone or combination of NBQX with either rolipram or
doxycycline reduced neuronal damage. The present study shows that combining
NBQX with an anti-inflammatory drug leads to long-lasting protection. These
results suggest that inflammation contributes to the postponed neuronal
damage following treatment with NBQX.
PDE4 inhibitors induce emesis in ferrets via a noradrenergic pathway.
Neuropharmacology 2001;40(2):262-9 (ISSN: 0028-3908)
Robichaud A; Savoie C; Stamatiou PB; Tattersall FD; Chan CC [Find other
articles with these Authors]
Department of Pharmacology, Merck Frosst Centre for Therapeutic Research, PO
Box 1005, Pointe-Claire, Dorval, Quebec, Canada H9R 4P8.
annette_robichaud@....
The objective of this work was to assess the role of alpha(2)-adrenoceptors
in emesis induced by inhibitors of type 4 phosphodiesterase (PDE4) in
ferrets. Pre-treatment with yohimbine, MK-912 or MK-467
(alpha(2)-adrenoceptor antagonists) caused sudden and unexpected vomiting.
In contrast, clonidine (alpha(2)-adrenoceptor agonist) did not induce emesis
at doses ranging from 62.5-250 microg/kg s.c. At the dose of 250 microg/kg,
clonidine also provided protection against emesis induced by the PDE4
inhibitors, PMNPQ (i.e. 6-(4-pyridylmethyl)-8-(3-nitrophenyl)quinoline,
CT-2450 and R-rolipram. It was postulated that PDE4 inhibitors trigger
emesis by mimicking the pharmacological actions of alpha(2)-adrenoceptor
antagonists. This hypothesis was strengthened by the demonstration that PDE4
inhibitors can reverse the hypnotic effect of an alpha(2)-adrenoceptor
mediated anaesthetic regimen in rats and ferrets. Similar to
alpha(2)-adrenoceptor antagonists, PMNPQ, R-rolipram and S-rolipram
dose-dependently decreased the duration of anaesthesia in rats injected with
the combination xylazine/ketamine. While subcutaneous injections of CT-2450
(3-30 mg/kg) were without effect, a central infusion (6 microg i.c.v.)
decreased the duration of anaesthesia. These studies suggest that the ferret
is an appropriate model to study emesis induced by PDE4 inhibitors and that
these compounds trigger the emetic reflex via a noradrenergic pathway,
mimicking the pharmacological actions of a pre-synaptic
alpha(2)-adrenoceptor inhibition.
Major Subject Heading(s) Minor Subject Heading(s) CAS Registry / EC Numbers
3',5'-Cyclic-Nucleotide Phosphodiesterase [physiology]
Phosphodiesterase Inhibitors [adverse effects]
Vomiting [chemically induced]