Re: OFF TOPIC-nicotine patch for tourettes

2007-06-30 16:48:14

I have no scientific information- but I know from doing some reading on my own
that the nicotine patch may be something to try. I actually talked about this
last night with my husband- before reading your email. So, I would like to know
if you can forward the address of the tourette information you've been
reading.I'd appreciate it- are you going to try it? It seems to me that it
(nicotine-low dosage) can't be worse than prozac, nizoral flagyl, or the host
of other meds are kids are on.!!
From: "Kevin Montgomery" <mont@...
Hi everyone,
OK, now don't freak out, but I have read on the tourettes email lists that a new
discovery is that nicotine is helpful in treating the symptoms of tourettes. It
is not saying that one should have their child take up smoking, but simply
wearing a nicotine low dose patch. Does anyone know anything about this? Since
tourettes and autism are related, shouldn't we look into this? Yes, it is a
drug, but so are many of the meds, obviously, that we give our kids to help them
overcome some of the autism symptoms.
Any thoughts?
Trina

Now, every time you shop online, you can help MAT promote NIDS research!
We have partnered with Shop2Give and BigPlanet. Visit http://mat.org for
more info!

OFF TOPIC-nicotine patch for tourettes

2007-06-30 16:07:43

Hi everyone,
OK, now don't freak out, but I have read on the tourettes email lists that a new
discovery is that nicotine is helpful in treating the symptoms of tourettes. It
is not saying that one should have their child take up smoking, but simply
wearing a nicotine low dose patch. Does anyone know anything about this? Since
tourettes and autism are related, shouldn't we look into this? Yes, it is a
drug, but so are many of the meds, obviously, that we give our kids to help them
overcome some of the autism symptoms.
Any thoughts?
Trina

Corn Gluten?

2007-06-30 08:20:06

came across something my son loves and it contains corn Gluten. i take it that
this means he cannot
have this? or is it just wheat gluten i have to worry about?

Re: Staying up Late

2007-06-30 06:04:41

Hi
I can only tell you about my son's experience. When he was 3 he started
having trouble sleeping, bouncing off the walls in the middle of the night.
After 9 months of loosing it, I saw an article somewhere that said "that warm
glass of milk could keep you up at night". It said there was something in
milk that sometimes keeps people awake. We removed milk, cream cheese, cheese
and ice cream from his diet and began using soy based products. After 6 weeks
he was sleeping through the night, every night, even after we moved to a new
apartment. It is worth a try.'
JAN

Staying up Late

2007-06-29 22:15:12

Ever since my daughter has been on the combination of Famvir, Paxil, and
Nizoral she has been staying up MUCH later at night, bouncing off the walls.
While she used to go to bed at about 8:00 pm, now she stays up until 9:30 or
10:30 (last night it was 11:30). Has anyone else had the same experience?
We're losing our minds - aagh.
Dr. Goldberg thinks it might be that she's still eating starchy foods
(bagels, tortillas and popcorn are her favorites) and has asked that she have
no sugar or starch after 4:00 p.m. Could this be the cause? It's a difficult
rule to implement. To make it worse, sometimes she wakes up in the wee hours
(3 ish) and stays up for a couple of hours, then sleeps in. Any ideas?
Thanks,
Yvonne Nelson

Hotel information and bus information for the rally

2007-06-29 20:12:19

Hotel reservation information for the rally for National Autism Awareness in
Washington, D.C. April 8, 2000.
www.ark-inc.org - click on the Hotel Registration link
I have set up a toll free number for you to call or fax me 1-877-418-0560
Thank you,
Mark E. Phillips
SilenceReserv@...
The Rally is taking place on the Mall between 3rd and 4th streets near the
front of the Capitol building reflection pool.
The Rally starts at 9:00 am on April 8,2000
<<...
Available Accommodations
Econo Lodge Alexandria 8849 Richmond Hywy
Alexandria,VA
Rates:$55 doubles
Tax: 6.5%
There are 55 rooms available to us.
5 miles to National Airport
5 miles to metro station available by bus or park at metro station
Econo Lodge Iwo Jima 3335 Lee Hywy
Arlington, VA
Rates: $64 Doubles
Tax:9.75%
There are 15 rooms available to us.
5 mies from National Airport
1 mile to metro station
Econo Lodge National Airport 2485 S. Glebe Rd.
Arlington VA
Rates:$69 one person
$73 two people
$6 extra person
Tax: 9.75%
There are 80 rooms available to us
shuttle service from the airport and to the metro station.
This hotel is the only one that wants to book the rooms themselves. Please
call 1-800-234-4440 and tell them you are going to the rally and you request
the "Autism" rate.
Days Inn Alexandria 6100 Richmond Hywy, Alexandria, VA
BOOKED!!! NO MORE ROOMS AVAILABLE!
Rates:$62 Doubles
Tax:6.5%
There are 40 rooms available to us.
8 miles from National Airport
10 minute walk to metro station
Comfort Inn Mt. Vernon 7212 Richmond Hywy. Alexandria VA
Rates: $55 double
There are 41 rooms available to us.
8 miles from National Airport
3 miles to metro station available by bus or park at metro.
Econolodge Pentagon 5666 Columbia Pike Falls Church VA
Rates:$59 double
Tax: 6.5%
there are 25 rooms available to us.
Metro bus service to rail station
The Omni Shoreham 2500 Calvert St. NW
Washingon DC
rates: $189 for kings and doubles
$289 for suites These are limited because we need to save some for our
speakers.
There are a total of 400 rooms and 15 suites available to us.
The Omni Shoreham will be the host hotel. We will have a welcome reception
and registration/information area here.
They are willing to go all out for us and our speakers so lets fill the
rooms quickly.
8 miles to National Airport available by taxi or shuttle info at airport.
.5 miles to metro station on Conneticut Ave and Calvert St
Charter Bus Information and Directions
As it gets closer to the rally I will have all the directions you may need,
hopefully posted on this site.
The metro rail system sells unlimited one day ride passes for $5.00 you can
purchase this at any metro station. There are unlimited one day bus passes
for $2.50 available from the bus driver. Two children under 5 ride free with
adult.
Parking at metro stations is free on weekends.
The metro rail stations open at 8:00 am and close at midnight.
I will have the rail and bus schedules posted so you may print out copies
before you go.
Charter Buses
All charter buses for Saturday only should arrange to drop passengers off at
RFK Stadium. From there you will get on the Metro and ride to Capitol south
station.
Leaving from Cherry Hill, NJ
Saturday April 8
Contact: Maureen (Monomb@...)
PACT's voice mail: 1-856-427-2225
Leaving from Long Island
Friday April 7
Contact: Angela Cerina at Acerina85@...
Leaving from Manchester, Maine
Friday April 7 at 6:00 AM
Approximate cost is $200 per couple
Hotel as of yet undetermined
Contact: Cathy at asm@... Autism Society of Maine
www.mainetoday.koz.com/maine/asm
Leaving from Queens, NY
Friday April,7 at 9:45 AM
Pick up in Staten Island at 10:45 AM
Hotel will be The Omni Shoreham
(register at 1-877-418-0560)
Cost is $35.00 per person checks made out to "AAOG"
For information contact: Sandy at AAOG1@... or 1- 718-370-8200
AAOG
1050 Forest Hill Rd.
S.I. New York 10314
Leaving from Streetsboro, Ohio (Cleveland)
Friday evening returning Sunday morning
Contact: RayEHughes@... or KFruscel@...
Leaving from Cincinnati, Ohio
Kenwood Baptist Church
Kenwood Rd.
Friday April 7 at 7:00 AM
Contact Tom Webb at TSWebb66@...
Leaving from Lincoln High School in Philly, PA
5:45AM on April 8th....Arrival est. time 9:00AM
Depart from DC 6:00PM..Philly arrive time 9:00PM
You can contact Steph at A1A2ANA3@... or Lisa at Lisa62864@... for
more information.

Re: question about antiviral treatment

2007-06-29 06:51:39

I have a couple of questions that I hope someone can answer. First, why do
the kids have to be on the antiviral treatments for so very long? One would
think that after a course of treatment to reduce the levels of antibodies
that the child could go off the meds without regressing.
Also how come no one is doing IVIG or other types of blood treatment instead
of all the meds? And do all kids who go on the antiviral treatments have to
go on the GFCF diet. We already did the casien free and after 4 months saw no
improvement. And last is it a given that a child is going to regress on this
type of treatment? As I wait for my son's test results to come back I am
trying to decide what I will do if these antiviral medications are suggested.
A severe regression could cause my son to have to be put in a psychiatric
hospital because he is 14 years old and weighs over 200 pounds. He would be
dangerous to try and handle for weeks and weeks of regression. The more I am
reading of these posts the more frightend I am becoming. On the other hand I
truely believe his blood work will come back showing that he has high levels
of antibodies in his blood. If any of you have some answers it would be
really appreciated.
JAN

RALLY ITEMS TO ADVERTISE AND SUPPORT AUTISM AWARENESS!

2007-06-29 06:08:06

The rally is drawing near - please consider purchasing these bumper stickers
to increase the advertising for this event! Never know who will be in the
car behind you who has, or knows someone, with autism! The bumper stickers
display the event as well as the website for more information! Please
consider displaying these for awareness!!
Would you take a moment and pass this along to other groups to help in our
efforts to "Help Spread the Word" for the rally???
Also, visit our webpage for items to wear at the rally! Great items for
group purchase so that we are noticed and stand out at the rally!!! We will
capture media attention by all wearing T-shirts and ribbons and buttons!!!
Please consider helping us promote and stand out at this event for National
Autism Awareness April 8, 2000 in Washington, D.C. , by purchasing these
items! The money from the sale of these items will help us pay for the
costs of the rally!!!
http://www.ark-inc.org/arkstore.htm
Thank you very much!!
Michelle Guppy - tguppy@... - for the Autism Resource Konnection
Call 1-877-no-autism for additional information, or to receive a detailed
order form by mail, contact me at tguppy@...
http://www.ark-inc.org/arkstore/htm
The bumper stickers read:
"Hear Their Silence"
Rally For Autism in Washington, DC
Autism Resource Konnection
1-877-662-8847 www. ARK-INC.org
You can get these through the mail at 20 cents per sticker. 10-- $2.00
20-- $4.00
30-- $6.00
40-- $8.00
50-- $10.00
and so on...
Send Check or money order (for these bumper stickers only) to:
Mark E. Phillips
3708 State Route 49
Central Square, NY 13036
* Thank you Mark & Mary! *

fmri's and neuropsychology

2007-06-28 23:08:25

Wondered if anybody here has had an FMRI performed on their child? According to
a top neuropsychologist here in the UK, nobody performs fmri's on people under
the age of 18, can anyone please tell me why this is the case?
Thanks in advance,
Liz Lucy
http://autistic-information.virtualave.net
.

Re: thanks

2007-06-28 19:23:20

Obviously, my previous message was supposed to be personal.
Aimee (with a red face!)

thanks

2007-06-28 11:40:08

Hi Michelle,
We really enjoyed meeting your family last night. Your girls are all so
beautiful and loving. I honestly feel you should have much hope for both
girls' futures. Kelly is making good clear words and was very social with
the boys and myself, and Megan is so young which makes for a greater chance
for full recovery. I enjoyed playing with Kelly so much that I wish I lived
closer so that I could help in your ABA program. Lucas had a good time
playing with Kayla, although he must have mom's bad memory for names because
he keeps saying "that girl was fun to play with," or "are we going to visit
"that girl" again soon." Both boys keep talking about what 'yummy' pizza you
made, and my husband wants me to get your mexican lasagna and chocolate/pecan
pie recipes! Thank you for an enjoyable dinner! I thought the post below
may make you feel that your not alone with your feelings about Dr. G's
treatment. I copied it from the NIDS onelist (sign on at www.onelist.com).
Talk to you soon, Aimee
Re: [NIDS] scared - success stories?
In a message dated 2/19/00 10:23:38 AM Eastern Standard Time,
JOSKAT95@... writes:
Is your little girl Sonja? I think our Church prayed for her. For our
appointment in NYC in Jan. I took our local clinic's clinical director so
that she could observe Dr. G. She saw all of the kids for 2 days and saw
nothing but success stories BUT she saw only follow ups and kids who had
been
going to him for a long time. I have been reviewing the tapes from the
conference and other things in order to set up the first NIDS clinic in NY.
You have to think about how much normal activity should have gone on in the
brain of the developing child and didn't, then you have to think about
undoing the damage that did occur. As much as I would also like a magic
bullet that would make Cindy normal so that we could have a little child
hood
before she becomes a teenager I just don't think it will happen. I do expect
that eventually she will be vastly improved but it will take time. I suspect
as Dr. G has better drugs to work with progress may be much faster. The
immune system is so complicated. I expect being an expert on one cytokine is
probably an accomplishment. I am spending my "free" time on fund raising for
MAT so that we can make those drugs available soon! Kathy

recovery and antivirals

2007-06-28 03:23:34

Our 5 year old son is now considered recovered except for a few delayed
language issues we are still working on (he is 6 months delayed in a few
areas.) We started medical treatment with Dr. Goldberg when he was 2 1/2.
Antivirals are a major contributor to his recovery. We started with Zovirax
for several months, then switched to Valtrex and saw a big improvement
during the first month. We remained on Valtrex for about 1 year. Several
times Dr. Goldberg had us try to stop the Valtrex but we saw regression
within 5 days each time. It wasn't until our son had been on it for over a
year that we were able to stop it. Our son has also been on Kutapressin for
one year. We currently are doing 2 shots per week and will be decreasing to
1 per week in a few months. We saw improvements with the Kutapressin after
3-4 weeks.
Our son will start kindergarten this fall on time and without an IEP thanks
to Dr. Goldberg's medical treatment. Our son is currently in private
preschool and is indistinguishable from his peers except for an occasional
speech error. His preschool teacher cannot think of any suggestions for
areas that we need to work on and states that he is academically the highest
in his class and is a very bright child. He plays appropriately with his
peers including pretending games and he is very social and empathetic. We
have not seen a stim or sensory seeking behavior for over a year. We have
also implemented an intensive home ABA program but we have not had to
address stims or appropriate play in the ABA program. These issues resolved
on their own as our son's immune system healed.
Not every child with NIDS fits the same profile. Hence the need for
protocol/profile studies as proposed by the NIDS Advisory Board. However,
the viral component was definitely the biggest factor for our son. It was
not an easy journey, but well worth the effort. (By the way, we give our
son his meds crushed and in a spoon of pureed fruit like applesauce or baby
food pears.)
Hang in there and best wishes to all,
Leslie

ANTI-VIRALS/POSITIVE TREATMENT RESULTS

2007-06-27 23:31:09

I've been reading all the posts about anti-virals (we're on Digest, so we see
things a day late). Some thoughts come to mind:
First, is everyone who is not seeing good reactions on the anti-virals
remembering to thoroughly wash off the coatings (blue or red dyes, etc)? I know
that nearly everyone does this, but I thought I'd mention it just in case
someone wasn't keeping dyes out of the picture.
Second, when we went over to the special diet and the first anti-viral
(Valtrex), our children immediately became more aware of their surroundings
within days (one is classified as severe (5-year old son, the other as moderate
(6-1/2 year old daughter)). This has continued during the past 14 months as a
slow, gradual improvement, but I do not expect to see the full extent that NIDS
treatment might accomplish in my children for another two years. I admit that
we've seen these little improvements nearly the whole time, however, so it's
probably easier for me to have faith in NIDS treatment than for some. Anyway,
once we cleaned up our children's diets, we then found that each child had still
more sensitivities that didn't show up in the blood tests. For my daughter,
it's melons and citrus. For my son, it's green herbs and cinnamon. Once we
removed these things from their diet as a secondary measure, they improved still
further - I'm sure that my son has still more foods to which he is sensitive. I
should also mention that both children got a horrible flu around Christmas/New
Year's that lasted 3-4 weeks (in my severe son, the flu never got full-blown,
but he definitely had low-grade problems for weeks). This flu, which ended up
as bronchitis and a sinus infection in me, set both of them back and I was
depairing for weeks in January. We do seem to be nearly back where we were,
however. I'm actually planning to get them - and myself - the flu shot next
year because I don't want to go through that again!
Third, the anti-viral, Famvir, which my daughter changed over to from Valtrex
starting in mid-November 1999, may be the key behind why, after two years of
speech therapy, she suddenly started on the road to talking in early- to
mid-December (about a month after she started the Famvir). At that time, she
daughter started imitating and initiating back-of-throat sounds (H, G, K) and
front of mouth sounds (B, T, TH) and, despite her apraxia, she'll actually say
"ma-ma" now (sounds more like BMA-BMA) when I ask her to. I've never heard the
words Ma-Ma so many times as I have in these past few weeks, even if I'm still
having to ask for it. Even better, my husband makes these to-die-for GFCF
chocolate chip cookies, which she loves so much, she even said "cookie" twice
last Saturday to ask for them (we've been out of cookies since then, so we've
not had a chance for a repeat). We're so pleased with Famvir that we're glad to
change our son over to it when his current prescription of Valtrex runs out.
We're also looking into Kutapressin, because we've had some evidence that the
anti-virals just aren't able to do enough at safe dosages (we accidentally gave
my daughter too much Famvir for a few weeks and her laughing and smiling became
so normal it was scary. Not too long after that, she started her improvements
in speech. Her laughing and smiling are still there, although less pronounced
since we corrected her dosage, but her talking has kept up at the same pace).
Finally, I can relate the story of a friend who started her high-functioning son
on NIDS treatment about 1-3/4 years ago. Her son had been through years of the
special diet (GFCF) and ABA, plus he had actually been on anti-fungals prior to
seeing Dr. Goldberg. His blood was pretty clean when he started treatment and
she says it did take her awhile to start seeing improvements. Her son is now on
Kutapressin and his mom says she can often tell the difference in his good
capabilities on the days that he's had his shot and the alternate days when he
hasn't. She's also very aware of when he's got a low-grade illness, because his
capabilities drop dramatically and she, at one point, even suspected that he was
reacting to being seated below an air conditioning duct at school, because he
started having problems with doing well in school the same week that they
started up the air conditioner last Spring. My friend also has a theory to
which I fully subscribe: she says that she believes her son's brain was
conditioned & exercised by the ABA but it was also "rewired" in a way. He
needed to have functioning pathways in his brain to be able function at such a
high level, so his brain synapses were obviously routing connections around the
"closed" pathways. After he started NIDS treatment, it was as if his brain was
confused. The closed, unused pathways were being opened up and, in a way,
competing with the alternate pathways that had been created. She felt he was
having some problems during the first year under treatment that were
attributable to the fact that he was having to "rewire" his brain again as he
got better. After listening to her and a few others, I'm convinced that the
higher-functioning children who start on NIDS treatment are the ones less likely
to see immediate, early improvements and the ones most likely to have unexpected
setbacks along the way, because their short-term expectations are so much
higher. I have the same long-term expectations as everyone - that my children
will be fully well - I just don't have high short-term expectations. I'm just
happy that they're continuing to get better.
Sharrill

Re: I have really messed up/long

2007-06-27 13:43:47

Cheryl,
Sounds to me like he has Aspergers. I have a friend that has a 14 year old son
with Aspergers and he is on the honer roll BUT he has 2 full time aids that help
him with some things. I think you need to look into getting him this label so
that he can get the services he needs. Lois (JJsmom)

Re: scared - success stories?

2007-06-27 07:29:28

Kathy - I'm also one of the frustrated parents whose daughter's progress with
Dr. G is very slow. You mentioned some success stories - it would be great if
those could be shared so we could get a little encouragement!
Thanks,
Yvonne Nelson

I have really messed up/long

2007-06-27 03:08:47

I have really screwed up and I'm not sure what to do now. I thought I was
doing the right thing but it seems to be blowing up in my face. I am now
struggling with the school to keep my son as Spec Ed and actually have them
help him. One mistake I made was to never get a diagnosis that really
covered his symptoms. Other than a diagnosis of ADHD prior to K, he has
only had a medical diagnosis. Now the school thinks I can just send him to
school and he'll be O.K. I don't care how well he is now, he didn't develop
normally and will never develop without help. To me he developed like a
child with Aspergers or Nonverbal learning disorder, maybe someone can tell
me what they think. These are the symptoms he had behavior wise:
problems nursing
crawled up my chest, didn't like cuddling
constantly needed to be bounced
problems falling asleep, always fell asleep in the car(had to stop due to
carsickness problems) moved all night
crawled alot on hands and toes for speed
a period of time with headbanging
would whip his head back and forth when running or while sitting in stroller
and laugh
would let his feet go out from under him to land on his bottom and
laugh(scared me to death, hard to stop)
hated the vacumn
hated haircuts
hated clothes, tags(had to be cut out of shirts) seams on socks, could tell
by touching something whether he would wear it or not
loved commercials, memorized and recited with T.V.
once he started watching tapes, he watched them over and over and over again
he was fearless with some things and very afraid of other things
constantly ran into things
couldn.t sit still
would take off if you didn't have ahold of him
daycare provider thought he had a hearing problem, he would just close off
at times
repeated something over and over again(I want........, I want........) could
last 30-60 mins or more
speech- some stammering, hard to understand(cleared up shortly after
starting school)
didn't like to color or draw
took him a long time to master riding his bike, tying his shoes
bothered by certain odors
temper tantrums
no real conversations, until we worked in the immune direction
In K I remember him screaming shut up, be quiet when it started to get
noisy.
School records show
defiant and hysterical
difficulty with social development
inappropriate and immature coping skills
doesn't seem to understand school rules, would scream I didn't hit anyone
when being punished for infraction other than hitting
does not respond to visual cues
and on and on and on
That is up to age seven, then he developed OCD on top of that with the
severe oppositional behavior that comes with it.
My problem is that he has missed so much school and they are trying to say
that lack of school attendance is the problem. In second grade he became
completely dysfunctional, I could not send him to school. It would take me
months to get his health somewhat on track and then he would start being
able to function at home. I would work on his academics in whatever way
possible. Whenever he had OCD he would lose his ability to write. I would
work with him all summer and start him back in school. Then within months
he would deteriorate and have the OCD and everything else back. This is how
it went during 2nd, 3rd, 4th. I tried different treatments each year, but
nothing was that successful.
Recent evaluation shows big VIQ is 17 pts higher than performance IQ
So now he is finally more stable, and I am trying to keep him that way.
What do I do? I know that with help he could be so successful. How do I
get the school to realize that this highly verbal child is not at the level
they believe he is at. He does have feelings now, he is doing well with his
friends around home.
School was causing him alot of stress. They did do one thing that I asked,
they started to give him a schedule that lists the time and work to be done.
This has enabled him to have some of the structure that he didn't develop
with his dysfunction. Instead of stressing himself out and shutting down, he
is able to compete his work. I had been going with him because I didn't
want to set him up for failure. He still has a really good outlook on life,
despite what he has been through. Without some kind of understanding on the
schools part, I know that they could destroy that.
What do I do now, other than finish having my nervous breakdown? I just
can't believe this, It is so frustrating. I feel like I am never going to
win. We've built up a ton of debt, with all the different treatments. I
had Dr. Fosnot evaluate him, which wasn't exactly cheap, and now the school
won't even look at what she recommended because they don't think there is a
problem. I really don't want to get into a legal battle, which I know would
be extremely expensive.
I need a vacation or a good cry I guess. I just don't have any more fuel
left in me. Thanks for listening(with eyes). Any thoughts, ideas, support
would be most welcome.
Thanks
Cheryl

Re: Digest Number 323

2007-06-26 21:31:22

___
I agree with Jan. My 4 yo son has not been dx with tourettes, but the thought
is there in my mind for him too.
We probably do at least 1.5 hours per day (over a three or four "sessions") of
sensory integration for different things, and over the long haul, I have seen
improvements. In Sept/Oct his stimming went to the point of self injury.. he
was biting his hand so badly it was cracked and bleeding. We tried some ABA
tactics, but after 2 months, we saw nothing. I then spoke with someone about
sensory integration and attacted it from that angle.
We put a rubber foot on a retractable string and used it to redirect him when he
would stim. Along with that, we did SI at both ends of the problem (on the hand
and in his mouth). After about a month of brushing, massaging, etc, this stim
has come down almost to nothing.
We also do ALOT of brushing, joint compression, and other SI for him to help him
regulate and be able to pay attention.
Roe

scared

2007-06-26 14:45:09

We tried Valtrex and Famvir and did not see the so called "die off" that was
predicted. We reported on NIDS our son complained of painful urination when
on both of these. He is now on Diflucan and it seems to be helping him a
little. Dr. G is also suggesting the Kutapressin for us too. I don't think
we're going to bother with that. I haven't heard any major improvement
stories to justify having to give our kid an injection every night. I don't
know what you mean by "brainwipe" that is a scary term, but keep in mind
that a reaction usually means you hit something. If you are considering any
of these above medications don't be alarmed if you get a negative reaction.
In fact, we were hoping for one that we never got. Finally, I think Dr. G is
good, but you can't put all your eggs in one basket. How many times have we
done that, just to be disappointed again. td

Re: scared

2007-06-26 07:42:14

Becky,
What happened when you tried the anti-virals. Goldberg
said there would be no reaction UNLESS Nick actually
had a viral problem but we saw almost total brainwipe from
Famvir (thank goodness we stopped it quickly). He is also
tlking Kutapressin with us.
Amanda

Re: tourettes and autism/dual diagnosis

2007-06-26 05:41:58

Hello,
My name is Michelle and I have a stimm crazy son.I know thant they are not
volentary because he stims even in his sleep.I think your on the right
track.Trust your instincts on this one............
Sincerly
Michelle
Shortyspivey@...

tourettes and autism/dual diagnosis

2007-06-25 21:57:31

Hi everyone,
I have just started researching the possibility of my son also having tourettes,
in addition to his autism. He is 6 and has had the diagnosis of autism since
age 23 months. But, I have always felt many of his "stims" were so involuntary
looking. I have a very "stimmy" child. In my search to recover him, and that
is what my dream is, I am finding that the ABA route is not addressing all of
the stimming. It is helping him academically, and even behaviourally, but not
in the stim category. I was beginning to feel like a failure. He is not
considered to be severly autistic. He has made much progress. But, the
constant twiddling, twitching, grimacing, etc., interferes so much with his
ability to stay focused and tuned in during drills and at school. I am not
trying to make excuses for his not "recovering" already, but I am trying to
figure out why, if that is at all possible.
There are kids all over the place who go on to "recover" and be mainstreamed
without the aides, and become indistinguishable from their peers. I have been
racking my brain trying to figure out why my son is not reaching these goals. I
have started researching the tourettes websites and news groups. I have found
that, just like with autism, the general public has the wrong understanding of
tourettes. I did as well. After reading and talking to other parents of kids
with tourettes and the dual diagnosis of tourettes and autism, I am beginning to
feel my son definitely has both.
It may just be that because he has BOTH disorders, the "stims", or tics, are
just not going to go away with the ABA, diet interventions, supplements, etc.
that he is getting right now. Maybe we need to try some of the meds recommended
for tics and tourettes. If there were some way to suppress his overwhelming
desire to tic, I feel he could surely concentrate better in school and life.
I have seen kids locally who have done so well and had their diagnosis removed.
I am beginnning to realize that those kids, while autistic, lacked the tourettes
componant that my son probably has. He is much more "stimmy" than they were.
Ok, so am I crazy? I don't think so. I realize the only benefit to having this
new diagnosis added to the autism would be so that the tics can be addressed.
It will not change my game plan otherwise. We will continue the ABA, diet,
supplements, etc. that we already do. But in the autism world, especially the
ABA world, stims are considered as behavioral and are simply redirected or
ignored. I have not found either of these methods to be very useful. So, maybe
there is really more to it??
Can anyone else agree with me, or do you all feel I am grasping at straws??
Trina

Kaleidoscope pins for special education.

2007-06-25 10:43:39

Hello! Most of you probably know about the MAX foundation Kaleidoscope
pins for special education, but if not, go to this website and click on the
"About the Symbol" button.
I am going to buy each one of my son's special education teachers this pin
as a gift!!
www.maxfoundation.org Click on the "ABOUT THE SYMBOL" button.
How wonderfully that describes out children!!!!!!!!!!!!!
Michelle Guppy

5HT-modulin, serotonin, adrenal medulla

2007-06-25 07:06:20

This article is available free on http://www.neuroscion.com
This article appears to contain clues regarding serotonin function
and might provide insights into hyperserotonemia in some autism
children. I'm fascinated that there is a link to the adrenal
medula.
This post may be shared, in its entirety, in other autism lists.
Teresa
Prog Neurobiol 2000 Jan;60(1):1-12
5-HT-moduline controls serotonergic activity: implication in
neuroimmune reciprocal regulation mechanisms.
Grimaldi B, Fillion G
Unite de Pharmacologie neuroimmunoendocrinienne, Institut Pasteur, Paris,
France.
The serotonergic neurotransmission is known as a neuromodulatory system exerting
its activity in the central nervous system (CNS) as well as at the periphery.
The anatomical and morphological organization of the system based on a marked
centralization of the cellular bodies and the large, almost ubiquitary, presence
of axonal projections of the neurons is in good agreement with this modulatory
role. Furthermore, a very high number of varicosities located along the axonal
branches capable of releasing serotonin (5-HT). The amine stimulates a number of
different specific receptor types which allows 5-HT to exert different
activities on its various cellular targets.
Among these receptors, the 5-HT1B subtypes play a particular role as they are
autoreceptors located on 5-HT neurons terminals and heteroreceptors located on
non-serotonergic terminals where they control the release of the
neurotransmitter. 5-HT-moduline, an endogenous tetrapeptide, regulates the
efficacy of these 5-HT1B receptors, hence, is able to control the serotonergic
activity in a synchronous manner for the various varicosities from a single
neuron and thus may favour the differential effect of that neuron on distinct
cerebral functions.
Accordingly, the peptide allows the 'fine tuning' of the cerebral activity by
the serotonergic system to elaborate the response given by the brain to a
particular stimulus, that is, stress situations. At the periphery, the
serotonergic system also appears to possess a regulatory activity via 5-HT1B
receptors. In particular, the receptors located on immunocompetent cells control
their activity and are themselves regulated by 5-HT-moduline likely originating
from adrenal medulla and released
after acute stress. The serotonergic system appears to play a major role in the
reciprocal signalling existing between the neuronal and the immune system. The
participation of 5-HT-moduline is likely in physiological functions as well as
in pathological disorders affecting central and peripheral activities.

Re: 5HT-modulin, serotonin, adrenal medulla

2007-06-25 07:01:55

Does this have anything to do with hyperprolactinaemia/raised prolactin? (pardon
me, I think this could be a bit over my head!!)
Liz.

Re: Xenotransplants Spur Fears of the Next Big Plague / Worts &amp; All / ...

2007-06-24 23:03:45

I understand that the danger from viruses can happen with the gene therapy
but what about all the kids with autism thayt are receiving secretin that is
generated from pigs? Are they at risk as well?

Nids romoval from mailing list

2007-06-24 19:09:56

please remove my e-mail address from your list
thank you

gastric oxytocin autism

2007-06-24 03:14:55

A number of autism researchers have hypothesized that oxytocin must play a role
in social deficits in many autistic children. Citations can be found be
searching medline
for "autism and oxytocin".
A large subgroup of autism-spectrum kids have gastrointestinal problems (Horvath
et al,
D'Eufemia et al).
A study by Yoichi Uetaa and colleagues makes clear a link between
gastrointestinal status
and oxytocin (1).
Another study I recently read mentioned that persistent gastrointestinal
inflammation can
lead to a permanent change in innervation of the gastric mucosa. I don't have
that cite at
my fingertips at this moment.
Here is a speculation:
1. Consider autism-spectrum kids with prolonged gastrointestinal dysfunction.
2. A subgroup of those children may have altered levels of available oxytocin.
3. As outlined by by Dr. Uetaa et al, a disregulation of gastric/PVN/oxytocin
processes
may contribute to (or be the basis of) social deficits in this subgroup of
children.
4. Relatedly, parental anecdotes suggest that some autism-spectrum children with
gastro problems improve in various traits if and as their gastro problems are
alleviated.
Teresa
cc: Yoichi Uetaa
This citation can be downloaded via http://www.neuroscion.com
Activation of gastric afferents increases noradrenaline
release in the paraventricular nucleus and plasma oxytocin level
Journal of the Autonomic Nervous System
Volume 78, Issue 2-3 January 2000 Pages 69-76
Yoichi Uetaa et al.
Effects of electrical stimulation of the gastric vagal nerves on
plasma levels of oxytocin (OXT) and arginine vasopressin (AVP)
were examined in rats anesthetized with urethane. Electrical stimulation
of the gastric vagal nerves increased the plasma levels of OXT, but not
AVP. The concentrations of extracellular noradrenaline (NA) in the
paraventricular nucleus (PVN) were measured by in vivo microdialysis
in rats anesthetized with urethane. Electrical stimulation of the gastric
vagal nerves evoked an increase followed by a slight decrease in the
concentrations of NA. The responses of spontaneous firing
magnocellular neurosecretory neurons in the PVN to both
electrical stimulation of the gastric vagal nerves and intravenous
(i.v.) administration of CCK-8 were examined. Most of the putative
OXT-secreting cells recorded were excited by both electrical
stimulation of gastric vagal nerves and i.v. administration of CCK-8.
These results suggest that gastric vagal afferents activate the central
noradrenergic system from the brainstem to the PVN and secretion of OXT.

Re: Bell's palsy Ramsay-Hunt acyclovir

2007-06-23 21:52:45

"The majority of peripheral seventh cranial nerve palsy cases remain without
an
identified etiology and will eventually be diagnosed as idiopathic or Bell's
palsy."
FWIW...
Bell's Palsy is pathognomonic for/diagnostic symptom of Lyme disease, the
most common tick-borne illness in US today. I wish that researchers would
stop looking for viral etiologies of every single syndrome or disease.
More info:
<A
HREF="http://www.geocities.com/HotSprings/Oasis/6455/misdiag-links.html#diseas
ePalsy"
http://www.geocities.com/HotSprings/Oasis/6455/misdiag-links.html#diseasePalsy
In a message dated 02/12/2000 9:05:51 AM Eastern Standard Time,
aspergerian@... writes:
<< From: Teresa Binstock <aspergerian@...
Bell's palsy and herpes viruses: to (acyclo)vir or not to (acyclo)vir?
Journal of the Neurological Sciences
Volume 170, Issue 1 November 1999 Pages 19-23
Israel Steiner [a] and Yoav Mattan [b]
[a]Laboratory of Neurovirology, Department of Neurology, Hadassah University
Hospital, P.O. Box 12000, Jerusalem 91120, Israel
[b]Department of Orthopedic Surgery, Hadassah University Hospital, P.O. Box
12000, Jerusalem 91120, Israel
A Corresponding author. Tel.: +972-2-677-6952; fax: +972-2-643-7782
Manuscript received 21 April 1999 Revised 28 July 1999 Accepted 21 July 1999;
Abstract
The majority of peripheral seventh cranial nerve palsy cases remain without an
identified etiology and will eventually be diagnosed as idiopathic or Bell's
palsy. Some features of this condition may be characteristic of a viral
infection. Indeed, several herpes viruses have been implicated as potential
causative pathogens. Besides varicella-zoster virus, shown to cause Bell's
palsy under the Ramsay-Hunt syndrome, recent years have seen an increased
interest and focus on the possible herpes simplex virus type 1 (HSV-1)
etiology in idiopathic facial paralysis. We review the clinical, biological
and virological basis for the potential herpetic cause of Bell's palsy and
the rational for antiviral therapy in this condition.

Re: remove

2007-06-23 20:18:25

You can do this yourself at www.onelist.com type in NIDS. Login to your
onelist account and select your choice from there, then click "save
changes"..

re: FMS/Autism: irritable bowel differentials

2007-06-23 16:55:34

Differences in somatic perception in female patients with
irritable bowel syndrome with and without fibromyalgia.
Pain Volume 84, Issue 2-3 February 2000 Pages 297-307
Lin Chang <linchang@...
FitzGerald a
and Bruce Naliboff
[a]UCLA/CURE Neuroenteric Disease Program, Departments of Medicine and
Physiology, UCLA
School of Medicine, Los Angeles, CA 90024, USA[b]Department of Biomathematics
and
Biostatistics, UCLA School of Medicine, Los Angeles, CA 90024, USA
Abstract
Background: Irritable bowel syndrome (IBS) and fibromyalgia (FM) are considered
chronic syndromes of altered visceral and somatic perception, respectively.
Because there is a significant overlap of IBS and FM, shared pathophysiological
mechanisms have been suggested. Although visceral perception has been well
studied in IBS, somatic perception has not.
Aims: To compare hypervigilance and altered sensory perception in response to
somatic stimuli in patients with IBS, IBS+FM, and healthy controls. Methods:
Eleven IBS females (mean age 40), 11 IBS+FM females (mean age 46), and ten
healthy female controls (mean age 39) rated pain perception in response to
pressure stimuli administered to active somatic tender points, non-tender
control points and the T-12 dermatome, delivered in a predictable ascending
series, and delivered in an unpredictable randomized fashion (fixed stimulus).
Results: Although IBS patients had similar pain thresholds during the
ascending series compared with controls, they were found to have somatic
hypoalgesia with higher pain thresholds and lower pain frequency and severity
during fixed stimulus series compared with IBS+FM patients and controls
(P<0.05). Patients with IBS+FM were more bothered by the somatic stimuli and had
somatic hyperalgesia with lower pain thresholds and higher pain frequency and
severity.
Conclusions: Both hypervigilance and somatic hypoalgesia contribute to the
altered
somatic perception in IBS patients. Co-morbidity with FM results in somatic
hyperalgesia in IBS patients.

FMS/Autism: irritable bowel differentials

2007-06-23 10:39:21

The following article is available for a free download, via BioMedNet at:
http://www.neuroscion.com Many fine studies are available at that site.
Differences in somatic perception in female patients with
irritable bowel syndrome with and without fibromyalgia.
Pain Volume 84, Issue 2-3 February 2000 Pages 297-307
Lin Chang, Emeran A. Mayer a, Timothy Johnson b, Leah Z. FitzGerald a
and Bruce Naliboff
In a subsequent post, I'll present the lead author's email address.
Parents of autism-spectrum kids who have a fibromyalgia anecdote to share
might write a brief note to Dr. Chang, mentioning the familial autism/FMS
connection. Inviting researchers to "think autism" will be helpful.
Each such letter, phrased with a parent's own insights, just might make
generate interest among this research group.
Teresa

remove

2007-06-23 05:54:43

Please remove me from the list!!!!! I have tried before, but it has not been
done!
Thankyou

removal from list

2007-06-22 16:39:18

please remove my email address from your list
thank you

Re: No mail

2007-06-22 16:17:26

Please set me for no mail. Thanks.

Bell's palsy Ramsay-Hunt acyclovir

2007-06-22 11:25:43

The following article is available free online. A person will need to register
for BioMedNet.
The article can be found at http://www.neuroscion.com
a site with one of the internet's most obnoxious menu system
but which as a huge amount of great articles and a search engine.
NeuroSciOn has extended the free-articles timetable.
This is a wonderful opportunity!
Teresa
Bell's palsy and herpes viruses: to (acyclo)vir or not to (acyclo)vir?
Journal of the Neurological Sciences
Volume 170, Issue 1 November 1999 Pages 19-23
Israel Steiner [a] and Yoav Mattan [b]
[a]Laboratory of Neurovirology, Department of Neurology, Hadassah University
Hospital, P.O.
Box 12000, Jerusalem 91120, Israel
[b]Department of Orthopedic Surgery, Hadassah University
Hospital, P.O. Box 12000, Jerusalem 91120, Israel
A Corresponding author. Tel.: +972-2-677-6952; fax: +972-2-643-7782
Manuscript received 21 April 1999 Revised 28 July 1999 Accepted 21 July 1999;
Abstract
The majority of peripheral seventh cranial nerve palsy cases remain without an
identified etiology and will eventually be diagnosed as idiopathic or Bell's
palsy. Some features of this condition may be characteristic of a viral
infection. Indeed, several herpes viruses have been implicated as potential
causative pathogens. Besides varicella-zoster virus, shown to cause Bell's palsy
under the Ramsay-Hunt syndrome, recent years have seen an increased interest and
focus on the possible herpes simplex virus type 1 (HSV-1) etiology in idiopathic
facial paralysis. We review the clinical, biological and virological basis for
the potential herpetic cause of Bell's palsy and the rational for antiviral
therapy in this condition.

Rally info

2007-06-22 04:37:36

This is just a friendly reminder that you need to book your rooms for the
rally.
Call me or Email me just get your rooms booked. If you booked your room but
have not given me your credit card information and/or have not gotten a
confirmation from me via Email. You need to get in touch with me now! I have
many rooms booked with no credit card numbers or Email confirmations I can't
confirm if your don't get back to me. I can't guarantee your room unless you
give me your credit card number.
Also remember the bumper stickers (We have 10,000 of them!) are in, go to the
web site <A HREF="http://www.ark-inc.org/"
and click on "bumper stickers" to get your low cost bumper stickers to
advertise the rally!
Thanks,
Mark

Re: OFF TOPIC- the use of DMAE/how much to give/

2007-06-21 19:24:34

Just what is DMAE, my son has both tourettes and auitsm and I have never
heard of it. DMG yes, but not DMAE.
Jan

OFF TOPIC- the use of DMAE/how much to give/

2007-06-21 17:21:28

Hi everyone,
I was on a website recently where it was saying how patients with Tourettes had
experienced positive results with DMAE. I have also read where the autism
community has talked about it's use with our kids. But, I can't find that
website anymore. I bought the DMAE, but do not know where to begin. My son is
6 and weighs a big 44lbs.
Has anyone out there used it or know the dosage for autism??
Trina

Vit C?

2007-06-21 05:34:32

Maybe hives? My son has been sent home twice with suspected chicken pox
(even though he was vaccinated for it at age 3). Both times he had the
hives. Once from eating a chocolate brownie and the other was a bee sting.
Hives is an allergic reaction, causing itchy raised welt like bumps. Oral
benedryl usually takes care of it in my family.

Vit C?

2007-06-21 01:17:12

I would add Calcium-Magnesium tablets (allergen free)--this calmed my
child--plus kyodophilus and one Freedavite (multivitamin from the FREEDA
company); start him on a four day rotational diet and patterns may start
emerging.
Kate

Re: Vit C?

2007-06-20 20:51:09

Carl 9y (HFA/Aspergers almost)
who lives down the road,
has been mainstreamed from 5y
suffers from increasing stress and anxiety
trying to manage at school.
When he comes home Maggie sais
it's like a dam bursting,
and she cops it.
(mental breakdown material)
She sais a small amount of DMG
helps his Immune system.
She has tried SuperNuThera
(Kirkmans, Mega B6/Mg etc)
but at one quarter a tablet
Carl comes out in raised spots
(not chicken-pox)
has anyone any suggestions at all -
Neil.

We Will Prevail Mailing List

2007-06-20 12:10:50

Hello-
I created this mail list because I saw a strong need for support and
information in this area. This mail list serves as a support group for
parents and families advocating for their children to receive more
appropriate services from their school districts. This mail list is also open
to advocates, attorneys and other professionals. The topic is open to
include all
disabilities and related legal issues. Hopefully, through this list, we can
help to educate each other and produce more successful IEP's that will help
our children to have brighter futures. If you are interested in joining the
We Will Prevail mail list, please go to the following URL:
http://www.onelist.com/subscribe/We_Will_Prevail
Thank you,
Kim Murphy

Re: We Will Prevail Mailing List

2007-06-20 08:49:44

Hello,
My name is Pat, and I am the mother of a boy with chronic fatigue
syndrome. I also am a child advocate in WI, so I keep a registry of kids
with dx CFS. Some on the list, including my son began showing symptoms
after vaccination. In our case, my son kind of shut down, nothing
dramatic, but for a kid who was talking in complete sentences by 2
years, at 3 he was pretty quiet. He did a bit of hand flapping, and
seemed to go from being totally lost in himself to over excitability. In
first grade, he had a lot of difficulty I would not have expected. A
little behavior stuff, but mostly learning.
Anyway..long story because now he is almost 18. When he was 10 with a
severe chicken pox, he stayed home the second semester...too wiped out
to go to school. Many infections and symptoms later, plus all the school
dealings, he will graduate from high school. He still has CFS, but has
been helped a bit by diet and supplements.
Kids on my CFS registry are so severe with viral symptoms, dizziness
and cognitive problems that many cannot attend school at all. There is
no medical help, and such a problem with misdiagnosis. Many of these
kids have a dx of school phobia, depression, and/or anxiety disorder.
The protocol for treating these may be harmful to a kid with CFS.
Anyway...CFS = Neuroimmune disorder
PAT FERO
WI

The Undiscovered Mind: Factoring Emotions / Bigger 'Supershots' in the Works

2007-06-19 23:02:02

FEAT DAILY NEWSLETTER Sacramento, Calif. Letters: FEAT@...
"Healing Autism: No Finer a Cause on the Planet"

Tips For Parents Seeing Signs Of Mutism

2007-06-19 21:57:41

FEAT DAILY NEWSLETTER Sacramento, California Letters: FEAT@...
"Healing Autism: No Finer a Cause on the Planet"

Autism/Vaccine stories needed

2007-06-19 10:55:35

I am forwarding this to some lists I am on - helping out my twin in Florida,
Michelle, who also has a son named Brandon just like I do!!
Please help out if you can!!
Thank you,
Michelle
Hi Listmates!
WE NEED LETTERS RE: Autism and the link from vaccinations!!!
I just got off the phone with Dr. Bradstreet's office. Dr. Bradstreet is
going to Tallahassee early next week for a meeting with Governor Jeb Bush of
Florida to discuss the link between vaccinations and Autism!!!!
THIS IS GREAT NEWS! Dr. Bradstreet knows what we go through, his own 5 year
old son Matthew had autism, Notice I said HAD, he is now almost totally
recovered. Dr. B. is making it his lifes work to bring about awareness and
give as much knowledge about Autism as he is able to.
HE NEEDS YOUR HELP! Please take any letter you have already done, or do one
now PLEASE! The letters should be relevant to the link between Autism and
the vaccinations!!!!!! Mine was 3 pages long, but very to the point of
describing what had happened and how it affects us now.
WE NEED AS MANY LETTERS AS WE CAN GET: Forward this on to another list if
you are aware of anymore, please help us. He is going on Monday morning,
send your letters today, please!!!!
SEND EMAIL LETTERS TO: gndoffice@...
SEND FAXED LETTERS TO: 321-953-3983 attn: Ann or Tom
Thank you, we need to be heard, now is our chance! Don't forget Gov Bush's
brother is running fo President, let's get their attention now!!!!!!!!!!!!!!
Michelle

Re: Asperger's Syndrome

2007-06-19 10:23:30

Regarding the URL for the recent Asperger's article: several publishers are
making their science articles available online. Usually, however, a person
wanting to download the article has to pay for the article or be staff/faculty
at a major med institution that subscribes to the journal offering the article.
Interlibrary loan is one way to get the article. Another probably is to visit
the publisher's home page and make an inquiry. Also, there are a number of books
about Asperger's, many in the under-$30 range.
Also, there is a major Asperger's website run by Barb Kirby. Even Yale Univ uses
her website to present info about Asperger's.
http://www.udel.edu/bkirby/asperger/frame1.html
Here are some of the titles from http://www.amazon.com
Asperger Syndrome : A Guide for Educators and Parents ~
Usually ships in 24 hours
Richard L. Simpson, Brenda Smith Myles / Paperback /
Published
1997
Our Price: $39.80
Asperger Syndrome : A Practical Guide for Teachers
(Resource
Materials for Teachers) ~ Usually ships in 24 hours
Val Cumine, et al / Paperback / Published 1998
Our Price: $24.95
Asperger Syndrome and Difficult Moments: Practical
Solutions for
Tantrums, Rage, and Meltdowns ~ Usually ships in 24 hours
Brenda Smith Myles, Jack Southwick / Paperback
Our Price: $19.95
Asperger's Syndrome : A Guide for Parents and Professionals
~
Usually ships in 24 hours
Tony Attwood, Lorna Wing (Preface) / Paperback /
Published 1997
Our Price: $18.95
Children With Autism and Asperger Syndrome : A Guide for
Practitioners and Carers ~ Usually ships in 24 hours
Patricia Howlin / Paperback / Published 1999
Our Price: $38.50
Pretending to Be Normal : Living With Asperger's Syndrome ~
Usually ships in 24 hours
Liane Holliday Willey / Paperback / Published 1999
Our Price: $15.16 ~ You Save: $3.79 (20%)
This Is Asperger Syndrome
Elisa Gagnon, et al / Paperback / Published 1999
Our Price: $12.95
A listmate had inquired:
http://www3.oup.co.uk/neucas/hdb/Volume_05/Issue_06/050475.sgm.abs.html

Asperger Syndrome

2007-06-19 01:01:03

http://www3.oup.co.uk/neucas/hdb/Volume_05/Issue_06/050475.sgm.abs.html

A thank you to Nancy for doing this Awareness Quilt...

2007-06-18 21:54:51

As time for the rally draws near - I thought it would be nice to thank Nancy
LeGendre for her idea and efforts in putting together the first ever Quilt
for National Autism Awareness! Long after most of us are in bed at night -
no doubt Nancy will be at her sewing machine fixing loose attachments,
adding a little border to make the squares just the right size, and
rearranging for that perfect look!!!
What a wonderful, much needed project she has started to help bring
awareness to the autism community and the Nation!
Thank you Nancy! We all appreciate the endless hours you are no doubt
putting into the Quilt!
If you need last minute information on the quilt, I am reposting her "A Call
to Action" letter for the Quilt. One addition - when at all possible, DO
NOT USE GLUE AND PLEASE USE STRONG, DURABLE FABRIC!!! If you need to use
glue, please make sure it is of good quality fabric glue - or better yet,
sew as many attachments as you can without glueing. I'm sure I speak for
Nancy in saying that we want it to be able to hold up being transported
state to state in the name of Awareness!!
A call to action...........
Autism can no longer be viewed solely as a brain disorder without hope for
medical treatment. Mounting evidence that autism has biological
determinants
across body systems (brain, intestinal, endocrine and immune) has prompted
the search for new treatment directions. In order to promote research in
these directions, we must first educate others about the prevalence of
autism. As a community, we must speak loudly about the rising incidence of
autism and the need to scrutinize our environment for cause. We must
inform, even as we ask for reform in vaccination policy, and demand that the
medical community work towards finding relief for the physical symptoms of
autism.
Fabric is an effective medium in which to relay our message. Fabric art
and/or quilt art is accessible to every level of talent and ability. Quilts
handed down from one generation to the next, attest to the durability of the
medium. Because fabric carries with it the associations of warmth, memory,
and tactile comfort, quilts evoke strong feelings of connectedness and
continuity. Imagine that all of us touched by autism join together to
create
a single statement of our intent to forge a new direction for our children.
Towards this end, I invite each one of you to submit a fabric square to be
stitched together into the first ever global Autism Awareness Quilt.
Participants are encouraged to incorporate any element of embellishment
(paint, thread, beading) suitable to the fabric medium. All levels of skill
are welcome. You may choose to interpret a traditional quilt pattern or
work
your design in applique or fabric collage. Use hand or machine based
stitching as it suits your needs. The only inflexible requirement is that
the unfinished (i.e. raw edges with 1/4 in. seam allowances) quilt square
must measure 12.5 in. X 12.5 in.. Squares are to be submitted without
backing or batting as these will be added upon completion.
Consider having your child's artwork transferred to fabric. It could then
readily be incorporated into a quilt square... and you would still own the
original art. For those interested in incorporating an image of their child
in their quilt square (photo-montage), the transfer to fabric will also work
well with photographs. There are many commercial shops that do this process
but I can recommend the following:
Innovative Imprints (888) 453-9617 (www.SewNet.com/Imprints). Direct
printing from home computers to paper backed fabric is also possible but may
require a fixative spray (follow the transfer medium manufacturer's
directions).
Through this quilt, we will join hands across the world in an effort to
direct the medical treatment of autism. The final date for receipt of
squares is March 1, 2000. The Autism Awareness Quilt will be carried in
Washington, DC during the "Hear-their-Silence" March on April 8, 2000.
Address for submissions:
Nancy LeGendre
P. O. Box 359
Prides Crossing, MA 01965-0359

measles and IVIG

2007-06-18 09:40:12

Hi all,
I was telling my Dr. About a friend of mine that has a child with
autism that had a high measles titer and that she did IVIG and the child
lost alot of its autistic ways and she said well by them doing that they
changed her blood and now she does not have immune bodies in her blood
now. What do you all think? Lois (JJsmom)

Th1 Th2 ; early brain development

2007-06-18 08:03:03

These cites were sent me in one post.
I'm not implying a connection between the two topics.
This Week in SCIENCE, Volume 287, Issue 5454,
dated February 4 2000, is now available at:
http://www.sciencemag.org/content/vol287/issue5454/twis.shtml

Re: Th1 Th2 ; early brain development

2007-06-18 07:16:17

Regarding your second article. Would this explain why so many spectrum
disordered kids seem to look so different in their second decade of life as
compared with their first? Kathy

Re: autoimmune tourettes autism connection?

2007-06-17 21:56:58

janneane, I would look at several websites and print out as much
information as you can. My 10yo progressed into OCD when he was seven. He
was diagnosed as ADHD prior to that.(but I now realize that high functioning
autism/aspergers, would have fit much better). When not doing well, he had
major, major mood swings/meltdowns. He acted just like the kids on show
about childhood onset bipolar.(that isn't what he has) He responds to
anti-virals, anti-fungals, and now seems to be responding to anti-biotics
also.(although this is just a part of what we are doing). Once their immune
system is dysregulated, they can have a hard time completely suppressing,
many different types of infections.
Dr. Goldbergs site is
http://www.neuroimmunedr.com
in his conference area you are able to post questions
http://www.nids.net
I would print out the hypothosis statement from either, the what's new
section on Dr. Goldberg's site, or from the nids site. There is also the
conference highlights available at the NIDS site or Summer 99 newsletter at
our parents site
http://www.mat.org
I hope that helps.
Cheryl

autoimmune tourettes autism connection?

2007-06-17 19:55:22

My 14 year old son has PANDAS (pediatric autoimmune neuro disorder associated
with strep) which is strep induced tourettes. He developed this at age 10. He
developed autism at about 2 1/2, before that he was normal. At the same time he
started showing characteristics of autism he also developed constipation and
became very gassy. There is also some family history of immune problems.
I am now assuming his autism is an autoimmune disorder too.
We treat his tourettes flair-ups with amoxil. I am hoping there is some way to
find out if his immune system is not functioining properly and if there is a way
to treat it. I have yet to find anyone who has a clue about this. I am also
trying to get his pediatrician involved and his psychiatrist (he has bipolar
too).
Any thoughts or ideas would be appreciated.

Re: To further the E-mail Oprah campaign, and idea.....

2007-06-17 10:24:21

Michelle,
Great idea and a wonderful letter.
Mary

CONFERENCE--CANADA

2007-06-17 07:18:21

PASSING INFO!! LOIS (JJSMOM)
Announcement for an upcoming conference:
Title: Autism 2000: On the verge of Medical Breakthroughs
Date: April 28-29th 2000, Montreal Quebec Canada
Speakers: Rick Rollens (Mind Institute) The Autism Epidemic: Is It Real?
Bernard Rimland (ARI): Four Decades of Autism
Karl Reichelt: The Psychophysiology of Autistic
Syndromes
Kenneth Bock: Transfer Factor
Andy Wakefield: The Gut Brain Axis in Autism
Sudhir Gupta: Immunology and Biological therapy of
Autism
Karoly Horvath: The Beneficial Effects of Multiple
Doses of Secretin
on the Gastrointestinal
and Behavioral Functions
of Children with Autism
Mary Megson: The Biological Basis for Perceptual
Deficits in
Autism; Vitamin A and G
Proteins
William Shaw: The Use of Antifungals and Antibacterial
Therapies
in the Treatment of Autism
and PDD
Paul Shattock: Environmental Factors in the Causation
of Autism
For More info: ATEDM (514) 524-6114 or fax (514) 524-6420 or email:
atedm@...
eGroups.co

To further the E-mail Oprah campaign, and idea.....

2007-06-16 23:35:38

It seems there was alot of participation across all lists in the E-mail
Oprah campaign, and some posted to maybe E-mail other talk show hosts.....
So, I have an idea that I would be willing to help organize.
Alot of people have different addresses to talk show hosts, newspaper
columnists, and so on. Maybe post to me privately any name and address of
that sort, and I will type them up, and E-mail the master list - to the
lists for everyone to just change the Dear Oprah part of their letters, to
dear whoever. Dear Abby, Dear Drew Barry, Dear Sally Jessie, Dear 60
minutes, Dear Dateline,........ whoever.........
Even magazines, like Time Life - they do human interest cover stories -
can't imagine Autism being the 3rd most prevalent disorder in children, not
being cover worthy. Surely if we all unite our efforts, they will all get
the hint that this is worth looking into. Since we all have the letters
typed anyway, we can just print out multiple copies and mail away......
Anyway, if you want, E-mail me whatever name and address and I will compile
them and post it to the lists for all who want to do that.
I have Ann Landers address and Time Life Magazine address.
Post privately!
Michelle Guppy
tguppy@...
Below is another version of my Oprah letter where I attempted to be more
factual, and give her possibly names of people to invite on the show in
support of Autism.......
It needs work, but this is a rough draft to maybe encourage everyone to be
sure and send facts especially to the newspapers........
Dear Oprah,
Hello, I am Michelle Guppy - the mother of a child with Autism. I can
provide you with many published articles stating the epidemic numbers of
Autism in this country. We have reached the end of one century, and are
beginning a new century - beginning it with one of the most misunderstood,
underfunded, devastating, disorders affecting our children. Autism is the
3rd most prevalent disorder in children. There are more than 500,000
children with autism - those counted and correctly diagnosed (not to mention
how many more out there not counted or diagnosed) and these children receive
only $10.00 per child in research into the causes! We are losing an entire
generation of children with the diagnosis of Autism - and the Nation is
simply not aware of it. Renee Russo testified to that fact before Congress,
as did Anthony Edwards. Please call me so I can discuss with you factual
articles and statistics so that one of the next shows you produce can
educate the Nation on the need to increase funding to help children with
autism. Most of whom are non-verbal and will need a lifetime of assistance
that will cost the government nearly $2million per child. We simply must
change the face of Autism! We, a group of mere parents with children who
have autism, are organizing a rally for National Autism Awareness in
Washington, D.C., in April to "Open Your Eyes to Autism" (meaning the
governments eyes) so that we can get increased funding for help and critical
legislation supported! This is an epidemic, with each state reporting
higher and higher numbers of children with Autism! We simply must raise the
awareness. Please help us in this task! The children with Autism now,
will no doubt remain that way until their death. With funding and research
the way it is now, my child will never see the cure and I may never know the
cause of his Autism! We are working to raise the awareness so that no other
generation of children has to live with Autism. We want there to be a
cause, accessible treatments, and dare we hope a cure by then!!
To gain a better understanding of the scope of Autism, please read the book
"Confronting Autism" and listen to the CD "Stand Up! Speak Out! Let your
voice be heard - it's going to take each one of us to change our children's
world." The CD cover highlights the various people committed to helping
the cause - Unlocking Autism with their "Open Your Eyes to Autism" picture
display project, and Nancy LeGendre who is stitching together from fabric
squares sent in from parents across the world, the first ever Autism
Awareness Quilt. Bernard Rimland, the father of Autism - who has been the
paramount voice for parents in their need for information and help. The CD
jacket tells a little bit about the inspiration behind the CD project -
Victoria Beck who has been a tremendous voice for Autism and inspiration to
all affected by Autism. Her book "Confronting Autism" gives parents hope
and a plan of action to help their children.
Please come follow my child for a day and see what I mean......these
children are troopers that need to be helped! While most children are
playing dress up and make believe, cowboys and indians, or coloring.... my
child at age 2 was in a strict school all day, therapy all evening, with no
weekends off...
Please help raise the awareness with a show on Autism!
Come meet the epidemic, face to face! My Brandon will touch your heart
forever......
Michelle Guppy
Cypress, TX
281-256-3034

OFF TOPIC- EMAIL TO TALK SHOWS

2007-06-16 13:03:39

go to www.newyorkshow.com and there is a list of links to talk show host and
send them a email and request that they do a show on autism in April for Autism
awareness
Thanks
Mary

typo in: interferon-alpha therapies, IBD, CNS, otitis, autism

2007-06-16 07:41:12

I apologize for an important typo!
I wrote:
"Cytokine-induced viral purging can occur with cell destruction (8)"
But meant to call attention to quite the opposite!
Cytokine-induced viral purging can occur WITHOUT cell destruction (8)
Here is a corrected version of the prior post in this topic:

Artistic savants.

2007-06-15 23:53:16

Artistic savants.
Hou C, Miller BL, Cummings JL, Goldberg M, Mychack P, Bottino V, Benson DF
Department of Neurology, Washington University, St. Louis, Missouri, USA.
Neuropsychiatry Neuropsychol Behav Neurol 2000 Jan;13(1):29-38
OBJECTIVE: The objectives of this study were to examine common patterns in
the
lives and artwork of five artistic savants previously described and to
report on
the clinical, neuropsychological, and neuroimaging findings from one newly
diagnosed artistic savant. BACKGROUND: The artistic savant syndrome has been
recognized for centuries, although its neuroanatomic basis remains a
mystery.
METHODS: The cardinal features, strengths, and weaknesses of the work of
these
six savants were analyzed and compared with those of children with autism in
whom artistic talent was absent. An anatomic substrate for these behaviors
was
considered in the context of newly emerging theories related to paradoxical
functional facilitation, visual thinking, and multiple intelligences.
RESULTS:
The artists had features of "pervasive developmental disorder," including
impairment in social interaction and communication as well as restricted
repetitive and stereotyped patterns of behavior, interest, and activities.
All
six demonstrated a strong preference for a single art medium and showed a
restricted variation in artistic themes. None understood art theory. Some
autistic features contributed to their success, including attention to
visual
detail, a tendency toward ritualistic compulsive repetition, the ability to
focus on one topic at the expense of other interests, and intact memory and
visuospatial skills. CONCLUSIONS: The artistic savant syndrome remains rare
and
mysterious in origin. Savants exhibit extraordinary visual talents along
with
profound linguistic and social impairment. The intense focus on and ability
to
remember visual detail contributes to the artistic product of the savant.
The
anatomic substrate for the savant syndrome may involve loss of function in
the
left temporal lobe with enhanced function of the posterior neocortex.
PMID: 10645734, UI: 20108332

Re: exogenous steroids during infancy

2007-06-15 15:12:51

In a message dated 2/1/2000 3:39:40 PM Eastern Standard Time,
aspergerian@... writes:
<< Thnx to the autism researcher who sent me this:
"Here is a really scary abstract about hydrocortisone (cortisol) given to
infants
on the first day of their lives.
I think my son was prescribed a cream like this 3 or 4 times for various
rashes. Very scary indeed, especially just for a study.
steph

exogenous steroids during infancy

2007-06-15 13:56:43

Thnx to the autism researcher who sent me this:
"Here is a really scary abstract about hydrocortisone (cortisol) given to
infants
on the first day of their lives. Who authorizes such experiments? What happens
to kids given hydrocortisone on the second day of life?
The second Week? The second year?
This study has been buried in med school libraries for nearly twenty years."
http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=6972513&form=6&db=m&Dopt\
=b

interferon-alpha therapies, IBD, CNS, otitis, autism

2007-06-15 13:30:11

Ruther et al document HSV as a significant participant in IBD and describe
how IFN-alpha treatment was very helpful (1). Becker presents citations
implicating HSV (nasal-olfactory-amygdala) and its migration into areas
affected in autism (2) -- eg, amygdala and hippocampus. Chonmaitree found
CMV and/or HSV in 2-4% of 271 kid with acute otitis (3). RM Gesser et al
documented that HSV can migrate from the gastroinestinal tract into the CNS,
including into the amygdala (4-6). IFN-alpha, helpful in HSV-related IBD (1),
is also helpful in HSV within the CNS, especially in conjunction with acyclovir
(7).
Cytokine-induced viral purging can occur with cell destruction (8), which would
be extremely important in cases of persisting CNS infection.
Comments: Given the correspondence between autism symptoms and HSV literature,
that some autism-spectrum children are acyclovir-responders is not surprising.
Should
IFN-alpha be researched as a therapy useful in a subgroup of autism-spectrum
children? In my opinion, the answer clearly is Yes.
Teresa
1. Hepatogastroenterology 1998 May-Jun;45(21):691-9
Interferon alpha (IFN alpha 2a) therapy for herpes virus-associated
inflammatory bowel disease (ulcerative colitis and Crohn's disease).
Ruther U, Nunnensiek C, Muller HA, Bader H, May U, Jipp P
BACKGROUND/AIMS: The etiology and pathogenesis of ulcerative colitis and
Crohn's disease remain unclear, so that exact causal therapy is not yet
possible. In our UC and CD patients, viral infections, particularly of the
upper respiratory tract, aggravated the underlying disease. This had led us
to use in-situ hybridization to investigate intestinal mucosa for viral agents
such as HSV I + II- and Epstein-Barr virus DNA. We found these DNA in the
cell nuclei in the surface and glandular epithelia of the affected mucosa of the
small intestine and the colon. These findings indicated that viruses may
exacerbate these inflammatory bowel diseases.
METHODOLOGY: Over a period of 1-4.7 years, we treated 16 patients
aged 25-65 with Crohn's disease (12 patients) or ulcerative colitis (four
patients).
In 14 patients, inflammatory bowel disease had been diagnosed years before
(mean, 15.3 years). When we started therapy, 75% of the patients with Crohn's
disease had extra-intestinal manifestations; and the CDAI after Best averaged
considerably above 150.
All patients had been taking either prednisone or prednisolone and/or 5-ASA or
SASP and/or azathioprine or metronidazole for many years. Using PCR, mucosal
specimens of the small intestine and/or the colon were tested for EBV-, HSV
I + II, HHV6- and CMV DNA. In 12 of the 16 patients. EBV- and/or HHV6 DNA were
found in the affected mucosa. Since interferon alpha administration has
proven effective in chronic hepatitis-B therapy, we decided to administer
interferon alpha 2a (13,46,47,55). After stopping the above-mentioned basic
therapies,
we commenced treatment with 6 million units of interferon alpha 2a
subcutaneously
3 times per week for at least six months. Four of the patients showed no signs
of improvement, and their therapy was stopped after three months. For the
others, therapy was continued until patients were clinically symptom-free
and viral DNA could no longer be traced in their mucosal biopsies.
RESULTS: With interferon therapy, 12 of the 16 patients showed slow but
continual
improvement. Particularly impressive was the remission of the extra-intestinal
manifestations, which did not recur in any patient during interferon therapy.
Four patients did not show any improvement, and the clinical symptom of
diarrhea continued. Two patients with ulcerative colitis suffered relapses
three and four years later, after severe bouts of para-influenza of the
upper respiratory tract. In these two patients, EBV- and HHV6 DNA was found in
the inflamed mucosa of the colon. Renewed therapy with interferon alpha 2a
successfully cleared up the inflammation. The patient group needed an
average of eight weeks to become clinically symptom-free, and an average of six
months to achieve complete virus elimination in the pathologically altered
mucosa.
CONCLUSIONS: For herpesvirus-associated ulcerative colitis and Crohn's
disease,interferon alpha 2a treatment should be started as early as possible to
prevent disease becoming chronic. Whether this kind of antiviral treatment will
be as
effective in the long term, and whether malignant transformation (herpes
viruses are potential tumor inducers) will be delayed or prevented, are
questions that can be answered only by future long-term studies.
2. Virus Genes 1995;10(3):217-26
HSV-1 brain infection by the olfactory nerve route and virus
latency and reactivation may cause learning and behavioral
deficiencies and violence in children and adults: a point of view.
Becker Y
Department of Molecular Virology, Faculty of Medicine, Hebrew University of
Jerusalem, Israel.
Two recent studies provided new evidence on the latency of HSV-1 DNA in 15.5% of
olfactory bulbs
and in 72.5% of trigeminal nerves from human corpses at forensic postmortems (1)
and in 35% of 40
autopsied human brains (2). In the latter brains, latent HSV-1 DNA was found in
the olfactory bulbs,
amygdala, hippocampus, brain stem, and trigeminal ganglia. Although in these
studies it is not known by
which route HSV-1 entered the olfactory bulbs and brain, experimental studies in
mice (3) revealed that
injection of HSV-1 into the olfactory bulbs leads to virus migration into the
brain amygdala and
hippocampus via the olfactory nerve and locus coeruleus. If the olfactory
ciliary nerve epithelium is the
port of entry of HSV-1 into the olfactory bulbs and brain in humans as well,
protection of the nose
against HSV-1 infection may be needed to prevent virus latency in neurons in the
amygdala and
hippocampus (3). Infection of humans by HSV-1 was estimated to increase from
18.2% in the 0-20 year
population group to 100% in persons older than 60 years (1), indicating that
worldwide human
populations at all ages are at risk of brain infection by the olfactory nerve
route. In addition, both primary
infection and reactivation of latent DNA in the brain may lead to damage of
neurons in the brain involved
in memory, learning, and behavior, as observed in infected, acyclovir-treated
mice (3). The current
introduction of a live apathogenic varicella-zoster virus (VZV) vaccine to
immunize children against
chickenpox (4) may suggest that the time is ripe for immunization of children
and adults against HSV-1
infections, especially infections by the olfactory nerve route, to prevent
potential brain damage.
3. Clin Infect Dis 1992 Oct;15(4):650-3
Presence of cytomegalovirus and herpes simplex virus in middle ear
fluids from children with acute otitis media.
Chonmaitree T, Owen MJ, Patel JA, Hedgpeth D, Horlick D, Howie VM
Department of Pediatrics, University of Texas Medical Branch, Galveston 77550.
Twenty-seven (10%) of 271 infants and children with acute otitis media (AOM)
were found to be
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.
PMID: 1330014, UI: 93042417
4. Gesser RM, et al. Latent herpes simplex virus type 1 gene expression in
ganglia innervating the human
gastrointestinal tract. J Virol. 1997 May;71(5):4103-6.
5. Gesser RM, et al. Oral inoculation with herpes simplex virus type 1
infects enteric neuron and mucosal nerve fibers within the gastrointestinal
tract in mice. J Virol. 1996 Jun;70(6):4097-102.
6. Gesser RM, et al. Oral inoculation of SCID mice with an attenuated herpes
simplex virus-1 strain causes persistent enteric nervous system infection and
gastric ulcers without direct mucosal infection.
Lab Invest. 1995 Dec;73(6):880-9.
7. Antiviral Res 1999 Nov;44(1):75-8
Effect of recombinant human interferon alpha B/D (rHu-IFN-alpha
B/D) in combination with acyclovir in experimental HSV-1 encephalitis.
Wintergerst U, Gangemi JD, Whitley RJ, Chatterjee S, Kern ER
The efficacy of recombinant human interferon alpha B/D in experimental HSV-1
encephalitis was
investigated in the murine system. Recombinant Hu-IFN-alpha B/D significantly
reduced the mortality in
a mouse encephalitis model (about 30%, P = 0.021), whereas natural mouse
interferon was inactive.
Combination of acyclovir with Hu-IFN-alpha B/D had an additive effect.
PMID: 10588335, UI: 20053556
8. Cytokine-induced viral purging -- role in viral pathogenesis.
Guidotti LG, Chisari FV. Curr Opin Microbiol 1999 2.388-91.
The authors mention type I and II interferons as well as TNF-alpha as
cytokines that can induce non-cytolytic viral clearance (in some cell
types).

RE: Misconception: Vaccines Cause Autism / Feb. 1 is Email Oprah on Autism Day

2007-06-15 04:38:44

Who wrote this ......?!!
The mere fact that "5%-15% of vaccines may develop a fever 5-12 days after
MMR vaccination and 5% may develop a rash" surely indicates either an immune
reponse and/or an allergic response to the vaccine or a substance within it.
What proportion of these children have predisposition to an auto-immune
dysfunction? What are the statistics for DPT or Hep B/HIB?
5%-15% is not "mere" it is in fact a significant proportion of any
population
Taking the middle of then range reported - ie 10% - all we need is 2% of
this ten, and that equates to 1 in 500!! We must concentrate our efforts to
understand more about those children who do react to vaccines and we might
come up with some real answers.
Robert

Re: More teeth questions

2007-06-14 19:56:23

Along similar lines from an earlier post, poor tooth development can be a
sympton of Vitamin A deficiency. It could be that the vitamin a that is present
is not being absorbed into his system. Has your son had patches on his skin
that have developed a bumby, sand paper like texture? That would also indicate
a deficiency. It's worth investigating.

More teeth questions

2007-06-14 12:19:02

On the subject of teeth. Our 4 year old autistic son has poorly developed
bottom teeth (small with big spaces in between), discoloured tooth enamel
and his upper front teeth are stained yellow/brown - particularly near his
gums. Dr. Goldberg said this is a symptom of his immune problems. We have
read that bad tooth enamel can be associated with celiac disease. We have
no celiac disease in the family. Our son is casein free and we have reduced
his gluten intake a lot - but have not completely cut it out from his diet.
We are thinking about going gluten free as a next step just to see if it
makes a difference. He does not have a history of bowel or stomach
problems (well, no obvious symptoms anyway) although he is a picky eater.
He sleeps well.
Has anybody else encountered similar teeth issues? We are taking him to a
dentist soon just to make sure it's not fluoride poisoning. We doubt it is a
fluoride problem - so does our doctor . We are pretty sure it must be due
to immune problems or some sort of deficiency but there are no obvious hints
as to the exact cause in his lab results. Any ideas?
Stefanie and Robert

UPDATE - NIDS Online Chat

2007-06-14 09:01:47

Dr. Goldberg has informed me that he plans to be online for the NIDS
Online Chat for today, Tuesday, February 1st. Look for Dr. Goldberg
on THE FIRST TUESDAY of each month. Dr. Goldberg will also continue
to drop in on other Tuesday chats throughout the month.
See you online!

Re: Rally invitations

2007-06-13 22:58:06

Hi my name is Denise and I run a nonprofit organization called, ACPDD- is
Association for Cerebral Parsaly& Developmental Disabilities on LongIsland.
I would like more information on this, Please email at DeniseMacri@...
Thank you,
Denise Macri- Founder

Re: ASAT Conference for Science March 9-10 NYC

2007-06-13 22:48:25

Hi my name is Denise, I just got back my computer, I was having problems with
it, and lost some of my notes.
I wrote in last month about my organization ACPDD- Association for Cerebral
Palsy & Developmental Disabilities on Long Island.
If you would like infomation on ACPDD you can email me at DeniseMacri@...
I need information on all upcoming events and conference thanks you.
Denise

RE: BRACES vs PULLING TEETH

2007-06-13 12:11:45

Trina,
Our daughter, who was 5-1/2 years old at the time, had both of her lower front
permanant teeth come in behind her baby teeth. In that case, we opted to have
her teeth pulled, in the hopes that this would bring the permanent teeth
forward. Unlike you, we had the reinforcement that one of my husband's
brother's had had a chronic problem with permanant teeth coming in behind baby
teeth.
Since then, she's lost one tooth on her own (the permanent tooth came in behind
it soon after) and she's got three more that are loose and have been loose for
about a month, but are not loose enough to pull (only one has a permanent tooth
coming in behind it, but I'll lay odds that the other two permanent teeth are
already out-of-place, even though they haven't broken through the surface yet.
I would advise not worrying about the braces at this point and focus on the
issues going on now. My daughter had perfect baby teeth and, despite our best
early efforts, is already assured of needing braces at some future point. We
would have had to have pulled all of her teeth on some sort of a schedule to
ensure that the permanent teeth didn't start descending before the baby teeth
were ready to come out and, even then, I'm not sure that would have worked.
You could get your son's mouth x-rayed to discover how his permanent teeth sit
under the gum. You may find that some of the problems he is having stem from
the current placement of his permanent teeth (maybe they're already angled under
the gums and that's why they're not forcing the baby teeth out when they come
down). I would also consider asking your son's dentist what makes a baby teeth
come loose in some children and not in others. If his answer is one that shows
he has little grasp of the subject or if he acts like that is a question he
doesn't have time to answer for you, I would definitely consider a second
opinion. You might also consider finding pediatric dentist who has dealt with
developmentally disabled children before.
Whatever you decide to do, make sure that you get full, satisfactory answers to
any questions you have so that you can be an effective part of the
decisionmaking process on your son. If his teeth are already coming in behind
others, he's going to need something to put them back, so you are probably
already doomed to have to deal with braces to some degree. If you are worried
that he can't comprehend braces, then you should consider getting him braces
when he is a lot older or waiting to see if he can get by, healthwise, without
them.
Again, we got two of our daughter's teeth pulled and have no regrets about that.
There is always the risk that she might have reacted to the substances that are
used to numb (novocaine, etc), but we plowed in anyway. All of the above are
things you should consider.
Hope I've given some insight.
Regards, Sharrill Hemry

Re: measles virus demyelination

2007-06-13 08:30:51

What is the range of clinical phenotype in SSPE? Is SSPE another of the
syndromes
wherein the worst cases tend to find their way into medical literature? Might
there
be a chronic SSPE that persists for years without turning into
rapid-deterioration
SSPE?
VK Singh 1998 has reported elevated anti-measles titres in many autistic
children.
The abstracts hereinbelow document that that demyelination often accompanies
chronic
measles infection. If a child has elevated anti-measles titres and anti-MBP
titres,
ought we be concerned with the possibility of chronic active infection?
Teresa
Neuropediatrics 1999 Oct;30(5):239-42
Apoptosis in brain biopsies of subacute sclerosing panencephalitis patients.
Anlar B, Soylemezoglu F, Elibol B, Dalkara T, Aysun S, Kose G, Belen D, Yalaz K
Subacute sclerosing panencephalitis (SSPE) is associated with inflammatory
infiltration, neuronal
loss, and demyelination. The pathogenesis of these changes is unclear. We
examined
DNA
fragmentation and Bcl-2 expression in brain biopsies of nineteen SSPE patients
to
investigate the
role of apoptosis in tissue damage. DNA fragmentation was present in
oligodendroglia,
and, in
tissues with neuronal loss, in neurons. Reactive astrocytes had no DNA
fragmentation,
but strong
Bcl-2 expression. These results suggest apoptosis as one of the mechanisms for
oligodendroglial
and neuronal death in SSPE.
2. APMIS 1998 May;106(5):553-61
Measles virus antigen in macrophage/microglial cells and
astrocytes of subacute sclerosing panencephalitis.
Mesquita R et al.
In two patients with subacute sclerosing panencephalitis (SSPE) of 10 and 25
months
duration we
demonstrated by immunohistochemistry the presence of measles-virus nucleocapsid
antigen
(MVNA) in CD68+ cells and astrocytes of brain tissues. In both cases, CD68+
hematogenous
monocyte/ macrophages and perivascular microglial cells (Mphi) were found
infiltrating the brain
parenchyma, and often partially or completely invested by perivascular reactive
astrocytes
expressing glial fibrillary acidic protein (GFAP). Mphi with cytoplasmic MVNA
were
often seen in
the Virchow-Robin spaces and in close association with perivascular astrocytes,
which
often also
contained MVNA+ intracytoplasmic inclusions. Reactive astrocytosis was more
severe in
the
patient with long-standing illness, and a correspondingly elevated number of
strongly
GFAP+
MVNA+ or MVNA- perivascular binucleated astrocytes was observed. An uptake of
MVNA+
cell debris by reactive astrocytes was evident in areas of white matter
displaying
extensive
demyelination and necrosis. Taken together, these observations seem to indicate
that
the brain
infiltration by Mphi carrying measles virus could represent one pathway of virus
entry and
dissemination in the central nervous system. Virus transfer to perivascular
astrocytes via cell-