Linda's Blog

Hi all, how I can relate to this,I had to look up what inertia met though,but
that`s me too.I `ve told my doctor that I just can`t seem to get motivated about
anything,and they on the rare occasions that I do,it`s like I deliberately
sabotage myself into not doing it.He says I need once a week to get out and do
something,I tell him I don`t know what to do,he says " well what did you want to
do when you were younger ",that`s a strange question coming from a doctor who is
treating an adult with add !!! I don`t know folks,there`s so much that having
this illness effects in our lives,but some how we make it though,right ? Tina
Andy Phinney <andy_phin@...
Hi Davaad,
You are right, "Inertia" is a good adjective for what normies see as
procrastinating. I have a HUGE problem with inertia. I have more trouble
getting started on anything, more than changing focus. I will sometimes go
a whole day without ever really starting anything because of inertia - it is
the number one cause of my stress and self-loathing.
My whole being is a contradiction to itself. For instance, I am generally a
morning person, but I oversleep all the time and show up late for work all
the time. When life becomes mundane I just can't get up and face it. If I
have anything exciting at all to look forward to I can muster some
motivation to overcome the inertia. But lately, this has become a terrible
habit. When I get to work I am already down on myself and even more
unmotivated to start anything. So, I glide through the day avoiding work,
with the hope that tomorrow will be a fresh start and I will do everything
right.
It is a vicious cycle and it is contagious. It spreads to things I like to
do!
Andrea

Heidi, unfortunately I know exactly what you are talking about. Every child
is different, but I think there are some children who have a hard time with
the SSRI's. I have two NIDS kids and they had completely different
responses. My older son could tolerate a fairly high dose of an SSRI. The
younger one has bad reactions to some and has never been able to do well on
anything but a lower dose.
As he has gotten better his tolerance has improved somewhat. If we go too
high we don't seem to get the terrible meltdown rages, but definitely a
personality change and other effects. We want the SSRI for the protective
effects, but it needs to be the right one at the right dose.
Cheryl

I joined this group a few backs, and have been "lurking" a bit. We
have three kids - Chloe (4 and no problems), Ivan (3 in October - dx
autistic last October) and Giselle (7 months...so far, so good).
I've really questioned myself - should I look into this for Ivan?
Should I try NIDS? Right now Ivan is in an EI program where he
receives 10 hours of ABA a week, and we do a lot more at home. We
just started the gf/cf diet - it seems like he's going through
withdrawls or something, is that normal - and I'm feeling brave and
willing to try this. I'm still nervous.
From what I've seen here, many people have hf autistic or PPD kids
who have made great gains. Ivan is smack-dab in the middle of the
spectrum, and is just starting to attempt language. He babbles a
lot, mimics his older sister, loves to run and play and play with
dolls. I'm still worried, though, that maybe the NIDS protocol won't
help him. Has anyone else done this and started with a non-verbal
kid? What was it like?
Ivan certainly has immune system problems. He always reacted to his
vaccines (in retrospect, I shouldn't have continued), culminating in
a severe reaction last year to a DTaP which required medical
intervention. He has eczema and red eyes and seems to always be
running a low-grade fever. His allergist says he's immune-deficient,
but that he'll "grow out of it". I've not placed to much stock in
this idea, since this doctor also insists that there is no such thing
as Chronic Fatigue Syndrome, or a host of other immune-system
problems.
Ivan's also anemic, and at one point his iron was tested at 8 (not
sure what the unit of measurement is). Does anyone else have a child
with anemia/anemic problems? Does this ring true for anyone else?
I'm babbling now, and it's late. I guess I need some reassurance.
My husband thinks I'll try anything, and of course, I WILL, but I
also have a good vibe about this.
Any info anyone has would be most welcome.
thanks,
Heather

Hi Davaad,
You are right, "Inertia" is a good adjective for what normies see as
procrastinating. I have a HUGE problem with inertia. I have more trouble
getting started on anything, more than changing focus. I will sometimes go
a whole day without ever really starting anything because of inertia - it is
the number one cause of my stress and self-loathing.
My whole being is a contradiction to itself. For instance, I am generally a
morning person, but I oversleep all the time and show up late for work all
the time. When life becomes mundane I just can't get up and face it. If I
have anything exciting at all to look forward to I can muster some
motivation to overcome the inertia. But lately, this has become a terrible
habit. When I get to work I am already down on myself and even more
unmotivated to start anything. So, I glide through the day avoiding work,
with the hope that tomorrow will be a fresh start and I will do everything
right.
It is a vicious cycle and it is contagious. It spreads to things I like to
do!
Andrea

I understand that Dr. Pala in Petaluma, CA is familiar with NIDS and accepts
the treatment. I live in Petaluma and plan to contact him as well.
Shelley
Petaluma, CA

my son is in his third wk of famvil (only 1 wk at full dose). major die off.
we are now experiencing slight improvement. just little things--but ill take
it! i hear once the virus is undercontrol or out of the body, clarity
sometimes follows. i guess that's what im seeing a little of. so, stick
with it! every child is different. my son started almost the same time your
child did. it will be nice to compare notes as they both progress

i enjoyed reading your "article". i too will stop at nothing to help my son.
he is 5 and diagnosed as autistic. i have tried pfeiffer ctr, gf/cf diet.
very little improvement (my son is non-verbal and major behav/sensory
issues). i read the info on dr g and it made good since to me so i am
trying. into my third wk on famvir (valtrex was horible!)
little improvement noted. still have a long way to go w/treatment w/dr g.
again, thanks for the info

Hi Robb:
Have you considered that your experience may reflect other
interactions beside the Ritalin interaction. Specifically, I'm referring to the
effects of Anxiety, and/ or depression, and/or Bipolar, and/or O.D.D.?
I'm not trying to suggest that you have any of these, but I recommend being
open to the possibility that you might.
I phrase it this way because of "MY" experiences.
Since being diagnosed as ADD/ADHD five years ago I have learned that the
ADHD world is both subtle, and simple.
I was completely unaware of, and would completely deny that I was anxious,
or non-compliant despite repeated observations to the contrary by my family and
friends.
ADD's are characteristically poor observers of themselves, and are also
characteristically emotional immature.
I interpret that to mean I have to very careful about what "truths" I let my
Lizard latch onto - it doesn't have a very good track record (as my story in the
files will reveal).
To get to the point, you come across as being somewhat anxious, or
impatient. Should you be experiencing either, the increased activity of your
nervous system might easily be interfering with your perceptions of the Ritalin
effects.
It's going to take some time to get yo know your new "you", no matter how
how painful "now" is, so the best thing we can try to do is to take our
attention away from things we can't do anything, and try to focus on things
around us that are more pleasant.
I suspect, Robb that lots of other people on this list have been through the
"Surf" too, and will probably share what tricks they used (or, are using) to get
between here and there.
If I have come across as condescending, I apologise, it's not my place to
suggest that I know you better than you do; but I know I would have greatly
appreciated some insight along the way (I really detest banging my head into the
wall without even seeing it coming!).
Smiling helps, even if you don't feel like it.
davadd
\
From: Robb Shecter
To: aadd@egroups.com
Sent: Thursday, July 27, 2000 6:44 AM
Subject: [aadd] 2 complicated Ritalin dosage questions
Hi all,
[I've seen my slightly inept doctor for the last time, where he gave
me a prescription for 120 x 10mg Ritalin tablets ... My goal is to now
make it as well as I can on this until the end of August when I make
my getaway to NYC.]
Anyhow, I'm doing some minor experimentation with Ritalin to gather
"data points" about what works, and what doesn't. Can anyone confirm
or deny these things I've noticed about Ritalin:
Assume that "D" is the duration of the effect of 10mg Ritalin for
you. In my case, D is around 1.5 hours. (Pitifully short - yes, I
know that Ritalin isn't the first choice here, and I'll definitely
want to try something else out in the US.) So:
1. Knowing D, at what interval should tablets be taken?
a) One answer is "Every D hours". Makes logical sense.
b) But, another answer could be, "D plus 0.5 hours", or even maybe,
"3/2 * D hours". I came up with this, because the concentration of a
chemical in your body takes the shape of a curve over time. And, the
onset of a new tablet could coincide with the end of the previous
one. But subjectively, (D + 0.5) is killing me: I'm still
experiencing ups and downs.
2. People who have a shorter D also have a longer wait before Ritalin
takes effect. In my case, I first feel the relaxation after 45
minutes of taking 10 mg. After one hour, I feel the full effects -
and it's possible that 10mg isn't really a full dose for me. Well,
this 45 - 60 minutes is much longer than most things I read about
Ritalin. I've started wondering whether it's related to the short D
(duration) of effect I have. Again, picturing the effect curve, if
only the top-most part of the curve affects me, then logically, the
onset would be shoved to the right (ahead in time). Sorry - I know
that an illustration would really help here.
Well, thanks for any feedback!
- Robb

Hi all, here is some information on Quinoa flour and the recipe follows. We
bought ours at the local health food store
Quinoa flour is a very versatile nongrain flour. It is in the same food family
as beets, spinach, and chard (don't tell your kids). It is an excellent source
of high-quality protein and calcium.
The nutritive value of quinoa per 100 gram dry weight;
Energy (Kcal) 351
Protein (g) 12.3
Fat (g) 6.1
Carbs (g) 67.7
Calcium (mg) 112
Iron (mg) 7.5
Vit C (mg) 3.00
Thiamine (mg) 0.36
Riboflavin (mg) 0.42
Niacin (mg) 1.40
CARROT CAKE
This recipe is free of all grains including wheat and corn, gluten, milk, eggs,
soy, yeast and refined sugar.
1 c. grated carrots
1 tsp. cinnamon
1/4 tsp. nutmeg
1/4 tsp. cloves
1 1/2 c. apple juice concentrate (if you are on the Feingold diet try pineapple
juice concentrate)
3/8 c. (1/4 c. plus 2 tbsp.) oil
1 1/2 c. quinoa flour
1/2 c. tapioca flour
1 1/2 tsp. baking soda
Combine the carrots, spices, juice and oil in a saucepan. Bring them to a boil
and simmer them, covered, for 5 minutes. Allow the mixture to cool to lukewarm
or room temperature. In a large bowl, combine the quinoa flour, tapioca flour,
and baking soda. Stir the liquid ingredients until they are just mixed in. Pour
the batter into 2 oiled and floured 8"by 4" loaf pans. Bake the cakes at 325 for
40-50 minutes, or until they are lightly browned and a toothpick inserted into
the center comes out dry. This cake will appear to rise and then fall slightly
during baking, but the texture will still be good. Freezes well.
As a topping suggestion, put a stencil on top and dust with Dari free.
Okay all you bakers, start your ovens and let me know how you made out.
Garbanzo beans (chick peas) are also really high in protein. We rinse a can of
them, toss them in oil and sea salt and bake them or stir fry them for 30-40
minutes (until they are crunchy) and eat them like peanuts.
Best of Luck with all your children,
Susan

Barb,
It is never too late. If your son is doing well, maybe he won't have as much to
learn. It is harder with older kids because you have to teach them more and
they have been sick longer. I think you will never know unless you try. I
would also have my little one tested too. Just for yourself, you need to know
you did everything possible for your son. And there are new immune-modulators
the doctors want to have FDA tested that they think will help more children
recover faster. Jump in, you'll never know unless you do.
Marcia

Hi all,
[I've seen my slightly inept doctor for the last time, where he gave
me a prescription for 120 x 10mg Ritalin tablets ... My goal is to now
make it as well as I can on this until the end of August when I make
my getaway to NYC.]
Anyhow, I'm doing some minor experimentation with Ritalin to gather
"data points" about what works, and what doesn't. Can anyone confirm
or deny these things I've noticed about Ritalin:
Assume that "D" is the duration of the effect of 10mg Ritalin for
you. In my case, D is around 1.5 hours. (Pitifully short - yes, I
know that Ritalin isn't the first choice here, and I'll definitely
want to try something else out in the US.) So:
1. Knowing D, at what interval should tablets be taken?
a) One answer is "Every D hours". Makes logical sense.
b) But, another answer could be, "D plus 0.5 hours", or even maybe,
"3/2 * D hours". I came up with this, because the concentration of a
chemical in your body takes the shape of a curve over time. And, the
onset of a new tablet could coincide with the end of the previous
one. But subjectively, (D + 0.5) is killing me: I'm still
experiencing ups and downs.
2. People who have a shorter D also have a longer wait before Ritalin
takes effect. In my case, I first feel the relaxation after 45
minutes of taking 10 mg. After one hour, I feel the full effects -
and it's possible that 10mg isn't really a full dose for me. Well,
this 45 - 60 minutes is much longer than most things I read about
Ritalin. I've started wondering whether it's related to the short D
(duration) of effect I have. Again, picturing the effect curve, if
only the top-most part of the curve affects me, then logically, the
onset would be shoved to the right (ahead in time). Sorry - I know
that an illustration would really help here.
Well, thanks for any feedback!
- Robb

Stephanie is correct. The FDA does not approve medical protocols. It approves
drugs. All of the drugs that are used at this time are all in any typical
formulary with the possible exception of Kutapressin because it is not a
commonly used drug. Kathy NIDS-NNY

Another couple cents. The original question concerning when the "NIDS
Protocol" will be approved by FDA. There is nothing for them to approve.
The "NIDS Protocol" is a basically just the application of sound
immunological and other medical principals utilizing exisitng drugs. Any MD
can implement the basic ideas if they had enough
interest/motivation/education. If on the other hand you are talking about
the "phantom immune modulator" that Dr G has talked about, that is only one
drug in the arsenal and that has not even been thoroughly tested. I'll put
my bet down on the table for that one being available and FDA approved for
the unborn autistic children. As I understand (from an insider) the patent
has been in litigation for several years.
Ray

ASA-Net
ASA-Net
The Autism Society of America's
E-newsletter
July 31, 2002
Indianapolis Conference Revs Up Autism Community;
High-Level Officials Address Attendees and Vow Support
If you thought they didn't care; if you wondered whether they were
listening; if you wondered when help would come; then wonder no more. Autism
experts, researchers, and high-level officials from across the federal
government came to ASA's 2002 annual conference this July to say they care
and to bring a message of hope to the autism community.
Several high-level government leaders, including U.S. Deputy Secretary
of Health and Human Services Claude Allen, the highest-ranking government
official ever to address an ASA conference, brought this message to
attendees at the 2002 ASA National Conference on Autism. In total, more than
120 experts, researchers, educators, and policymakers offered up the latest
information on the range of issues facing families and caregivers of
individuals with autism, including education, treatments, options for
adults, and the like.
Some 1,500 registrants participated in the five-day conference, which
was held July 17-21, 2002, in Indianapolis, Indiana. Feedback from
participants indicates that this year's conference, entitled "Champions and
Challenges," offered all who took part - parents, educators, caregivers,
researchers, and chapter leaders - an opportunity to network and learn about
effective ways to deal with autism across the lifespan.
ASA President Lee Grossman provided the opening remarks of the
conference highlighting the tremendous strides the Autism Society of America
and the autism community have made over the past year in awareness, research
funding, and setting a national agenda on autism issues. Mr. Grossman
provided the most up-to-date and eye-opening statistics on autism,
demonstrating that autism is clearly now a "national emergency that has
reached epidemic proportions."
Secretary Allen gave a heartfelt speech about his commitment to
expanding programs and support for autism. "We are looking at everything
from treatments for symptoms for autism, to genetics, to environmental
factors that may cause the disorder," Secretary Allen said. "While the
science is important, we have to make sure we are providing services and
tools to families that are living with autism."
"For those of you who are struggling out there," he added, "I want you
to know that we are working for you, and we want to work with you to build a
network of services that will improve the lives of families living with
autism."
Jose Cordero, M.D., M.P.H., U.S. Assistant Surgeon General and
Director of the Center for Disease Control and Prevention's (CDC) National
Center on Birth Defects and Developmental Disabilities, provided an overview
of the Center's programs, presented information about their prevalence
surveillance programs, which are ongoing, and talked about their efforts to
pursue possible causes of autism through their Centers of Excellence.
Stephen Foote, Director of the Division of Neuroscience and Basic
Behavioral Science at the National Institute of Mental Health (NIMH), part
of the National Institutes of Health (NIH), spoke about NIH's initiatives in
the area of autism, including a boost in funding to $55 million in 2001 and
the creation of the Interagency Autism Coordinating Committee (IACC). Dr.
Foote called the agency, to which ASA President Lee Grossman was appointed
by Health and Human Services Secretary Tommy Thompson, a "reality check and
a gut check" with respect to autism research and services.
Keynote speaker Anthony Attwood, Ph.D., offered insights into the
"continuum of autism" and shared enlightening information about autism and
Asperger's Disorder from his decades of experience in the United States and
abroad. He talked about the different types of behavior of individuals with
Asperger's Disorder, as well as the various pathways that lead to a
diagnosis, including early childhood diagnosis, recognition when enrolled in
school, and diagnosis of a relative.
Keynoter Andrew Wakefield, M.D., presented findings of various
research projects that support his theory of a possible between the
Mumps-Rubella-Measles vaccine and autism. While no definitive answers can be
drawn as yet, Dr. Wakefield's presentation offered food for thought for
parents and researchers alike.
Liane Holliday Willy, Ed.D., Jean-Paul Bovee, ASA Board Member Stephen
Shore, and Ruth Elaine Hane, shared the stage in a keynote presentation on
their "personal perspectives" on growing up and living with autism.
In addition to these presentations, conference participants had the
opportunity to attend some 100 other seminars and workshops during the
conference, such as the latest work being done by ASA's Panel of
Professional Advisors (PPA), led by David Holmes, Ed.D.; trainings and
brainstorming sessions for ASA chapters; the Adults with Autism Town
Meeting; sessions for siblings; and the ever-popular "For Dads Only"
session.
But the conference was not all presentations and seminars. ASA also
offered participants an opportunity to reflect on the good work that is
being done by so many in and outside the autism community. During the
conference, ASA publicly honored the 2002 ASA Awards and Scholarship Program
winners for their tireless work on behalf of individuals with autism.
The ASA also honored another tireless autism advocate, Congressman Dan
Burton (R-IN), at a special "Evening of Champions" dinner. Congressman
Burton, who has a grandson with autism, was honored for his "significant
contributions to improve the lives of Americans with autism."
More detailed information about the conference presentations and
events will be included in the upcoming issue of our member publication, the
Advocate.
ASA Welcomes New Board Member
The ASA board has a new director, Liz Roth, who was elected this June.
Ms. Roth is a former ASA Board member having served on the board from
1994-1999 where, during her tenure, she served as 2nd Vice President,
Treasurer and as Finance, Awards, Communications and Nominating Committee
Chair. Ms. Roth is also Co-President of the Maryland Montgomery County ASA
Chapter. She has been steadily involved in the local politics scene being an
effective advocate and monitor of idea, adult issues as well as federal and
state judicial matters. In addition to her ASA activities Liz is a founding
director and board member of K.E.E.N., Kids Enjoy Exercise Now.
In addition to Ms. Roth, ASA is pleased to have three incumbent
directors continue their services. Jeff Sell, Cathy Pratt and Rick Rollens
were all re-elected for another term.
Highlights from ASA Membership Meeting
ASA held its 2002 annual membership meeting on July 18 at the 2002 ASA
national conference in Indianapolis. Highlights of the meeting included
reports on the ASA election, including the announcement of the winners of
the ASA Board election. ASA program reports for the year were covered in the
annual report, which highlighted that 79% of ASA expenditures go towards ASA
programs, including education, awareness, and advocacy. ASA President Lee
Grossman reviewed a year of many positive changes for the ASA, culminating
in the upcoming membership vote for bylaws changes to support ASA's
reorganization plans (look for your ballots this autumn).
ASA Government Relations staff also presented at the meeting.
Highlights from their presentation included: updates on medical research
with regards to the CDC and NIH. To date, ASA advocacy has led to the
creation of a federal public health program in autism at the CDC. ASA has
also asked NIH to ensure that the Centers for Excellence in Autism continue
to develop and that both the NIMH and National Institute of Child Health and
Human Development (NICHD) continue existing program finding through the next
five years. The report also highlighted the issues related to the
Individuals with Disabilities Education Act ( IDEA) and the Smith-Doyle
Teacher Education for Autistic Children Act of 2000, as well as current
efforts to continue to boost autism awareness in Washington.

This was sent to me by a close friend;
I think it needs to be passed along.
davadd
Subject: Fw: Life's Lessons
A lesson for us all in this story. In Brooklyn, New York, Church is a
school that caters to learning disabled children. Some children remain in
Church for their entire school career, while others can be main- streamed
into conventional schools. At a Church fund-raising dinner, the father of a
Church child delivered a speech that would never be forgotten by all who
attended.
After extolling the school and its dedicated staff, he cried out, "Where is
the perfection in my son, Shay? Everything God does is done with perfection.
But my child cannot understand things as other children do. My child cannot
remember facts and figures as other children do. Where is God's perfection?
The audience was shocked by the question, pained by the father's anguish and
stilled by the piercing query. " I believe," the father answered, "that when
God brings a child like this into the world, the perfection that he seeks
is in the way people react to this child."
He then told the following story about his son Shay: One afternoon, Shay and
his father walked past a park where some boys Shay knew were playing
baseball. Shay asked, "Do you think they will let me play?" Shay's father
knew that his son was not at all athletic and that most boys would not want
him on their team. But Shay's father understood that if his son was chosen
to play it would give him a comfortable sense of belonging. Shay's father
approached one of the boys in the field and asked if Shay could play.
The boy looked around for guidance from his teammates. Getting none, he took
matters into his own hands and said "We are losing by six runs and the game
is in the eighth inning. I guess he can be on our team and we'll try to put
him up to bat in the ninth inning."
Shay's father was ecstatic as Shay smiled broadly. Shay was told to put on a
glove and go out to play short center field. In the bottom of the eighth
inning, Shay's team scored a few runs but was still behind by three.
In the bottom of the ninth inning, Shay's team scored again and now with two
outs and the bases loaded with the potential winning run on base. Shay was
scheduled to be up. Would the team actually let Shay bat at this
juncture and give away their chance to win the game?
Surprisingly, Shay was given the bat. Everyone knew that it was all but
impossible because Shay didn't even know how to hold the bat properly, let
alone hit with it. However as Shay stepped up to the plate, the pitcher
moved a few steps to lob the ball in softly so Shay should at least be able
to make contact. The first pitch came and Shay swung clumsily and missed.
One of Shay's team-mates came up to Shay and together they held the bat and
faced the pitcher waiting for the next pitch. The pitcher again took a few
steps forward to toss the ball softly toward Shay.
As the pitch cam in, Shay and his teammate swung at the ball and together
they hit a slow ground ball to the pitcher. The pitcher picked up the soft
grounder and could easily have thrown the ball to the first baseman.
Shay would have been out and that would have ended the game. Instead, the
pitcher took the ball and threw it on a high arc to right field, far beyond
reach of the first baseman.
Everyone started yelling, "Shay, run to first. Run to first." Never in his
life had Shay run to first. He scampered down the baseline, wide-eyed and
startled. By the time he reached first base, the right fielder had the ball.
He could have thrown the ball to the second baseman who would tag out Shay,
who was still running. But the right fielder understood what the pitcher's
intentions were, so he threw the ball high and far over the third
baseman's head. Everyone yelled, "Run to second, run to second." Shay ran
towards second base as the runners ahead of him deliriously circled the
bases towards home. As Shay reached second base, the opposing short stop
ran to him, turned him in the direction of third base and shouted, "Run to
third."
As Shay rounded third, the boys from both teams ran behind him screaming,
"Shay run home." Shay ran home, stepped on home plate and all 18 boys
lifted him on their shoulders and made him the hero, as he had just hit a
"grand slam" and won the game for his team. "That day," said the father
softly with tears now rolling down his face, "those 18 boys reached their
level of God's perfection."
Funny how this is so true! Funny how simple it is for people to trash
different ways of living and believing and then wonder why the world is
going to hell. Funny how people can send a thousand 'jokes' through e-mail
and they spread like wildfire, but when one starts sending messages
regarding life choices, people think twice about sharing. Funny how the
lewd, crude, vulgar and obscene pass freely through cyberspace, but
public discussion of morality is too often suppressed in school and the
workplace.
Funny how when you go to forward this message (if you choose to forward it),
you will not send it to many on your address list because you're not sure
what they believe, or what they will think of you for sending it to
them.
Funny how we can be more worried about what other people think of us than
what we think of ourselves. FUNNY ISN'T IT! OR IS IT?

Heidi,
My son experienced similar unprovoked emotional outbursts (sobbing,
yelling, despair) when he was switched from Paxil to Celexa, although
not as extreme as what you're describing. We were advised to
increase the dosage but that didn't help and I insisted on going back
to Paxil, which was working well in the first place. I was not
willing to stick out out any longer. My only advice is to keep Dr.
Goldberg's office advised daily of any extreme reactions like this.
Best wishes,
Vicki

In a message dated 7/26/00 11:14:27 AM, shecter@... writes:
<<A point in favor of allowing voodoo/wacko/quack promoters to stay is
that it gives us an opportunity to point out the problems with their
"solutions". This could even have a really positive educational
benefit. Of course, we're really lucky that there's a lot of
resources on the web (like QuackWatch) that makes "debunking" easy.
Anyhow, I get a kick out of doing it.
Hi Robb
It is sometimes difficult to draw the lines. I think that Lexxy as "list
owner"
has been sensitive to the needs of the list. I agree that some controversy
can be healthy. I personally have no problem with investigating alternative
approaches.
What I do have trouble with is folks jumping on board to "sell" us a
product/cure.
It is possible that someone on this list may have an allergy and/or problem
with toxicity, and thus are not truly ADHD. If Bernie's information helps
them, then
great.
Bernie, (if you are reading this please hear what is being said...) I would
like
to get to know you and be able to discuss issues together. I believe that
you wish
to help and educate folks... However, many are not receiving your messages.
I don't
believe in shooting the messenger... The messenger needs to find a better
way to
deliver or understand that the message is out there and receptive people will
contact
him/her.
Be well,
Jane

The standard IQ test (WISC-III) is not appropriate but there are non-
verbal IQ tests for this purpose.

Hi,
I've been wondering about what the guidelines could/should be about
kicking people off the list. Bernard has a longer history here than I
know about, so I don't really know if he's always been like this.
Aside from violating the group's charter, one solid criteria could be
if someone just trolls, posting inappropriate messages, and then
doesn't engage in discussion. But, looking at the archives, it does
look like Bernard has read and responded to postings here in the past.
A point in favor of allowing voodoo/wacko/quack promoters to stay is
that it gives us an opportunity to point out the problems with their
"solutions". This could even have a really positive educational
benefit. Of course, we're really lucky that there's a lot of
resources on the web (like QuackWatch) that makes "debunking" easy.
Anyhow, I get a kick out of doing it.
My 2 cents,
Robb

my son was on valtrex with horible results. now is famvir and at first bad
news! i was encouraged to continue--reaction should last bet 7-21 days. well,
about two weeks later and my son seems to be over the worst of it.
so, stick with it!

welcome to the group. where do you live and what are some of the things you
are/have tried?

Our 6-yr-old son has been on Zoloft for 2.5 weeks now (first time on
Zoloft; many different SSRIs used to date). He appears to have
bouts of "rage" in which he says things like "I hate you", "I want
new parents", "I want to die", "I'm not going home with you". These
episodes are generally not prompted by some sort of catalyst. He is
like Dr. Jekyll and Mr. Hyde! He also opened the car door while we
were driving down the road (Thank God he had his seatbelt on!) in an
attempt to get out of the car. (We now have the child door lock on
of course). This is the first time in his life he has ever done
this! He then ran out the front door as soon as we got home, and
had to be retrieved and locked in his bedroom for safety. On a
recent plane trip, he verbalized that he said "I want to jump out of
the airplane". Has anyone else experienced these kinds of
disturbing episodes? Dr. Goldberg says his brain is probably
adjusting to the medication, we need to ride this out, and he SHOULD
come out better on the other "side"! As a parent, I want him OFF
the medication so he doesn't hurt himself!!! We have a phone appt.
w/him for tomorrow, but I wanted to find out if anyone on this NIDS
website had any experience with this and could give me their input.
Thanks!
Heidi Arnn

Hi SM-
Just what part of the NIDS treatment are you thinking is not FDA
approved? I don't think the "protocol" requires FDA approval (I know
individual drugs require approval). My son has never received anything
that is not FDA approved and legal.
Just like everyone else, if I get a sinus infection, my doc starts the
rounds of various antibiotics and if there is a fungal infection too,
throws in the anti-fungal. I don't see how NIDS treatment is any
different. Maybe you are asking when the protocol will be recognized by
the establishment as legitimate treatment for children with the
(psychological) Dx of Autism? I guess I am confused about what you mean.
Stephanie

"Hi Lexxy:
I've deliberately avoided paying attention to this thread, but I'm
curious as to ways of blocking these posts.
I don't think I can do it at my end without blocking the list, and I don't
want to do this
davadd"
There really isn't anything we can do. Some folks just have a different
agenda!!! It seems to me to be like someone is giving credit for converting us
to their way of thinking. We have been pretty lucky not to have more
controversial advocates than we have had. It juyst happens. I have just
skipped any post from someone whose past messages I have become bored with.
It's like I love to throw out mail w/o opening it...yes...I have almost thrown
out a check...actually a couple of times. I just don't have time for this
stuff!!!
You know I don't like to ever censor folks and I have only done it twice due to
nastiness...a long time ago. Some folks just want to have their say. I'm not
worried about him reading this....if he ever read our posts he would know that
his condescending, preachy attitude doesn'g fit in here anyway...
Lexxy

Clara
rwbauer@...

"No one has yet computed how many imaginary triumphs are silently celebrated by
people each year to keep up their courage."
-- Athenæus (Circa 200 A.D.)
-- Greek grammarian, rhetorician

Hello All:
I've just spent the past two days reformatting my system after
trying to load IE 5.5 onto my system.
As a result I'm reloading all my software, and personal files, etc., etc.,
ad nauseum.
Which brings me to......I don't have any email addresses left; so this is a
request to my friends and neighbours in this community to write me a backchannel
email so I can rebuild my address book.
My embarrasses gratitude is with you all,
davadd

Hmmm... I don't know. Maybe we should start a pool. I'm guessing by the time
my 4 year old has finished graduate school. So I'll take June 2023. Any
other takers?
Okay, I know this isn't really very funny when the future of so many
children are at stake. But the problem with the NIDS protocol is that only
children and their families will profit from FDA approval. Pharmaceutical
companies put a lot of money into lobbyists and backing so-called
third-party, objective *experts* to put pressure on the FDA to expedite the
approval process for their product. A lot of high-level politics and big
money goes into setting the FDA agenda.
Personally, I think one of the biggest obstacles to gaining political
advocacy for medical intervention is the lack of one national organization
that all parents would support. Many parents are only supportive of methods
(whether it is medical, diet or behavioral) that worked for their child. The
etiology of each child's autism is long, involved and complex--it's hard to
fully understand all aspects even when you are a concerned parent. It'll be
a long haul educating FDA officials, government leaders and the media to
make a paradigm shift in their understanding of autism.
Again, just my two or three cents.
Lynne

Hi All,
Sorry to jump back to an old thread here, just catching up on my mail after
work changed my e-mail address (throwing my lists into total chaos). Hope
everyone is well!
I was pleased to check my mail this morning to see a thread going on
procrastination - something I wake up every morning in fear of. Amongst my
peers, I have a reputation for being a professional procrastinator and it's
something I've had to deal with for my whole life. I too feel that I fall
into the "perfectionist procrastinator" category, so much so in fact that I
focus too much on perfecting the act of organising myself before actually
starting the actual task - almost like iterative procrastination, a spiral
effect if you like.
I am making progress in overcoming this problem, and for me personally I
find that reading about motivation and how to get motivated helps a little.
A few weeks back I made mention of a book I was reading about "Mental
Viruses", which goes into great detail about how you can bring yourself
about to achieve spontaneous motivation. I'll touch on this briefly.
Making lists is stressed heavily in this book, and for me it's probably the
best starting point since I love the actual physical aspects of writing.
Right now I'm at work, and despite the fact that everything here is
electronically geared (I work on a helpdesk for a PC company) I find it much
easier to organise my daily tasks with just pen and paper - I outright
refuse to use the helpdesk software until the end of the day when I have to
update everything.
After some practice I can now get myself motivated by recalling situations
where I have been able to get my act together and do something to the point
of completion. Everyone knows that after completing a taxing job or sizable
task that there is a feeling of achievement, satisfaction and depending on
the situation, reduced stress. If you can tell yourself, "If I just put my
shoulder to the grindstone and do the job **now**, I know how I'll feel
afterwards." and then keep in mind that once the tasks is done it's done and
it's no longer there to worry over, it helps! It's old advice, as old as
the hills, but it worked for me :) The mentions so much more on this, but
it's probably out of scope for this discussion.
I don't know about personal organisers or diary software or anything like
that.. it's not for me anyway!
Anyway I've procrastinated long enough with this e-mail, time to do work :)
Brett.

I'll show you my pix when you show me yours this weekend!!!
Someone more techy than I am will have to guess!!! I didn't need any special
skills to be list owner....apparently my smart mouth is an extra!!! I will
check...
Lexxy

Dear Doug
There are probably a lot of us on GFCF diets who can remember what carrot
cake with cream cheese frosting tasted like. Any chance of posting it for
all to try?
Thanks in anticipation.
Richard Windsor

THE CENTER FOR DEVELOPMENTAL EXCELLENCE IS NOW OPEN!!
THE ONLY CENTER OF ITS KIND FOR AUTISTIC SPECTRUM DISORDER,
ADD/ADHD AND DEVELOPMENTAL DELAYS!
Run by parents of an autistic child
Our new office is located at :
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Phone: 856-566-5797 FAX: 856-566-5798
TOLL FREE 1-866-566-5797
CDEinfo@...
www.cdeinfo.com- under construction
You will now have access to many different therapies and services
available for Autism and Developmental Delays. Some of the services
are as follows:
Sensory Integration/Occupational Therapy-daily Monday- Saturday
Interactive Metronome- daily Monday-Saturday
Yoga
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DAN Doctor- Dr. Neubrander
The Listening Program
Neuro-feedback
Auditory Integration Therapy- October 11-20, 2002- LIMITED SPACE!!!
Special Needs attorney
Specialized groups
Sports programs
Karate programs
Open Play
Dad and Me
Also offering birthday parties!!! Saturdays and Sundays. Call for
information

You have to be sending a message from the email address you joined under...check
it out. Actually I'm a member under 2 addresses in case one is down...Lexxy
My e-mail is the same. Still won't let me in to look at pics. Any other
ideas??
Lin

I read this site and didn't see any clinical validation or medical studies.
Hey! It's a theory...lotsa folks got theories!!! I got theories...you got
theories...a dime a dozen!!! This site wouldn't be selling anything would it???
Hummmm!!! Folks, especially chiropractic practitioners, have been trying to
connect ADHD to allergies for decades!!! No verifiable success....just
theories...and I got this from the conference in Atlanta in May.
Today, my theory is ....this site wants me to buy their books....I got
books...they don't help like the Ritalin does....except the exercise I get
shuffling them around helps. And spouting off about quack theories helps a
lot!!! I feel better already!!!
I did PR for Chiropractors too long. I used to market this kind of thing.
...and a bunch of other "cures". I used to write these ads. I can read
between the lines.
I'll stick with MEDICAL doctors for ADHD!!!
Lexxy
A doctor I know sent this post. This is one of the fastest growing
methods for curing ADD and ADHD. I know several practitioners having
success in most cases treated.
The developer (D.N.)of the method has a book about curing ADD you can
probably find at http://www.naet.com
Bernie

Krista,
send a message to JOSKAT95@... and Kathy will reply - she will see your
post in any case!!
Robert

Kathy Robertson's clinic is in Watertown, N.Y. ... which is about an
hour north of Syracuse and an hour south of the Canadian border ...
along Hiway 81.
I see someone has already posted her email.
Dave

Yes, I would love the recipe. Thanks for the information.

Hi Otilia,
I think that some childrens anti-virals might be switched around every six
months or so, so that the virus doesn't get used to the meds.
I would stay on the gluten free completely, if it seemed to be working. Even
though it didn't show up on our son's food sensitivity test as a problem, we
had a misshap and we had to peel our son off the ceiling. For some children
, just as it caused an improvement over time it can also cause a subtle
regression. In some children GF/CF can make huge improvements and in others
it doesn't seem to make a difference. Until you are positive it doesn't make
a difference you should try to stick with it.
I don't know much about amino acids but if you are looking for high protein
foods your son may eat, I have a recipe for carrot cake made with quinoa
which is a high protein, high calcium, gluten free grain, that you son may
eat. Post if you want it.
Susan

I tried to post last night for the first time and don't think it
went through, so I am trying again. I was in the chat room last
night and asked Dr Goldberg if there was anyone that he consulted
with on the east coast who follows the NIDS protocol. He mentioned
an "outreach clinic" somewhere in upstate NY and gave Kathy
Robertson as a contact person there. Does anyone know where the
clinic is and/or have a phone number or email address where they can
be reached? Krista

hi, marcia! i just read a couple of the articles you
sent me. i am very worried and in a panic now that
perhaps my son is too old to be significantly helped
by dr. goldberg. he is 11. i wonder if he would
think it is too late to give significant benefit to
him. he is fairly mild in terms of the autistic
characteristics. in fact, his sp. ed. teacher thinks
he is a very sweet boy--not a problem at all. he just
can't learn very well. his lds are significant. i
sat with him tonight doing math and he has troubles
with adding simple numbers. after all of the reading
therapy at lindamood-bell, he still reads at the 2nd
grade level if we are lucky. he just progresses so
slowly with so much intervention. what do you think?
also, what do you think about this? my younger son
did not really talk until 4 or 4 and a half. he was
the one we were really worried about. he is basically
recovered by the grace of God, but i do feel he has
the immune issues. would you also have him eval'd if
this were your child? i am nervous to do them both at
once for some reason. thank you. barb--- Frank Hinds

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

In a message dated 7/22/00 6:39:19 PM, berniew1@... writes:
<<A doctor I know sent this post. This is one of the fastest growing
methods for curing ADD and ADHD. I know several practitioners having
success in most cases treated.
Bernie-
There is no known "cure" for "real" ADHD.
If someone's allergies or problems with toxicity cause inattention they are
NOT ADHD.
Do you have ADHD? What is your purpose for being on this list?
Jane

For all of the parents who live in Santa Rosa and have children
on a GF/CF diet, Whole Foods now carries DynoBites in the
freezer section. Dyno Bites are frozen chiken nuggets that are
gluten free. My son loves them. They also carry a protein
powder that is made from egg whites not soy or rice.
If you don't live in Sonoma county you can order the Dyno Bites
on line at yorkshirefarms.com.
Hope this is helpful.
Otilia

He and Ava Braun took Cyanide and I think shot himself , go figure, sorry
don,t know Docs name, but its probably a matter of record who his personal
physician was.....I wouldn,t recommend him though. (Yuk!)
Ed

Hello,
I am looking for a goo open minded pediatrician for my son. We
live in Santa Rosa and are looking for someone who will
consider the NIDS information or at least be willing to read it.

Suzi B and Bea and whoever,
I'm with you guys about hand-writing task lists day after
day. I gave it a good try, though. I'm personally
acquainted with both Hyrum W. Smith and Stephen R. Covey,
two of the highly respected (in the US) gurus on the topic,
and I used to edit their seminar tapes. I learned a lot
from them about setting priorities, determining what's
really important, working from core values, etc. But, as
I've said before and as I'm sure many of you will empathize
with, I'm great on the blue-sky, creative stuff. But when
the plodding, mundane, _booriiing_ stuff comes along, the
best systems there are don't work very well for me.
I don't use a hand-held planner (at this point I don't have
that many tasks to keep track of when I'm away from the
office...oh, I might write a grocery list on a card, but
that's about it), but I do have one on my computer.
My problem is, the list keeps getting longer and longer and
longer. I manage to keep my daily A items to a minimum, but
after that, it's "Whoa, Nellie!
Oh well, I have all of those secondary tasks available when
I need them. And some of them will turn into A's any day
now. I should do them in my spare time. Hey, maybe I'll do
some now!
Naw, I think I'll read a book instead....

Hello All,
I need help understanding how to best help my son.
Justin has been seeing Dr. Goldberg for about 6 months now
and over all we have been very happy. I do however need help
with the following:
1. Justin has done very well being on Valtrex, however he seems
to be regressing in the last 2 months. Is it possible that the
Valtrex can lose its effectiveness?
2. About 4 weeks ago Dr. G started Justin on Paxil and he did not
do well at all. We have just recently changed to Celexa and the
first day I noticed that Justin had a need to have his hands in his
mouth all day. As the days have continued his need for oral
stimulation has become less but he still has his hands in his
mouth a lot. We have noticed some improvement in potty
habits,
but he is still not doing as well as when we first had him on the
Valtrex solely.
3. Justin has been on a GF/CF diet and we have now allowed
him to have some Gluten (not a lot) per the "does and don'ts of
the diet". Should I keep him off of the Gluten completely?
4. My son is a VERY picky eater (like most of our kids). He will
hardly ever eat meat. Can anyone suggest a good amino acid
supplement that is ok with Dr. G.
Sorry for all of the questions, any help is appreciated.
Otila

A doctor I know sent this post. This is one of the fastest growing
methods for curing ADD and ADHD. I know several practitioners having
success in most cases treated.
The developer (D.N.)of the method has a book about curing ADD you can
probably find at http://www.naet.com. The book is also
available through most big bookstores.
19 Jul 2000 08:39:10 -0700
From: "Dr. Gary Erkfritz" <geedc@...
Last weekend I was priviledged to attend the NAET annual symposium. One
of the presenters was a Dr. Penny Montgomery, who is an associate of
Margaret Ayers. Apparently those involved with EEG Neurofeedback find
Margaret Ayers to be a familiar name. Anyhow, Margaret Ayers has
developed a "real time" digital EEG machine. One of her discoveries is
that there is a specific allergy pattern that shows up with ADHD people
in the frontal lobe of the brain, and once treated using NAET,
disappears, along with the hyperactivity. I'm going to copy a portion
of the Symposium manual under "Brain Wave Changes Before and After
NAET":
Case 2. A ten-year-old boy diagnosed with attention deficit,
hyperactivity
disorder showed high voltage, and rhythmic fast activity in his
EEG. I asked the
parents whether they thought he was allergic to anything. They
stated that they
thought he was allergic to sugar or chocolate. They wanted to test
this hypothesis
by giving him chocolate bars and looking at the EEG. The second
overhead
shows the EEG that was taken two hours after eating several
chocolate bars (note
the activity of the EEG and try to imagine someone with brain wave
activity like
this being still and focused on a task in school). The EEG shown
on the third
overhead was taken two days after eating the chocolate bars (note
that the allergic
pattern is still very present in the brain). The fourth overhead
shows the same
child's EEG, which was taken after he received NAET (note that the
fast, rhythmic
activity is gone).
I'll be checking to this more, but it sounds like a pretty interesting
tool for further research.
Gary
PS. For more information, go to www.neuropathways.com
Also note that both Gary and other NAET practitioners have success
treating ADHD even without the machine; the machine just gives
confirmation that the allergin causes neurologic effects and that the
treatment makes them go away. both of these are determinable almost as
easily without the machine. The machine is not actually part of the
cure, only confirms cure.
Bernie
ps another doctor who has had a lot of success treating ADHD
by NAET is the following who is from Orlando Fla, and gives seminars to
other NAET practitioners on how to cure ADHD, autism, etc. using NAET.
Patricia Omiecinski <PAT14001@...

Adolf Hitler was basically living on Amphetamines toward
Is this how Hitler committed suicide?
I thought he hung himself?
Do you know the name of the doc who wrote the cyanide script?
Thanks, Monica

Bea,
That rocks! I just sent it to my work e-mail so I can start using it at the
office. It's first task is to buzz me this evening to call and find out if I
can stand down from standby status on my other job so I can go to the fridge
and have a brew.
Thanks a ton, Bea!:-)
P.S., I went hunting for it myself rather than ask you to give me the link.
It was more fun that way.:-)
GrizzlyDan

OKAY, NOW I GOT TO CHECK OUT THE 'LIZARD' SITE...

encouragement, that my lizard isn't interested in 'shoulds', 'houldn't's' etc.,
even if it originates within me.
about some things...interruptions, and changes are at the top of my lizard's
list.
works) that requires lots of 'reframing' my lizard's perceptions.
MANY TIMES I HAVE WANTED TO START OR CHANGE SOMETHING AND WAS POWERLESS
TO DO SO... THERE WAS SOMETHING INSIDE ME THAT HAD TO "SHIFT" I HAVE
NEVER UNDERSTOOD THIS, BUT DAVIDD WHAT YOU SAY ABOUT THIS LIZARD THING
MAKES SENSE TO ME.
LORETTA

Hi Gaylen,
My feeling is Dr. Goldberg will definitely want the viral tests. He's very
cautious. Like any single test, the viral titers give one piece of the puzzle,
but you need all the peices together to get the entire picture.
Donna

I am also having truoble with Dr. Goldberg's website.
Hopefully it will be working for this evening's chat.

Hi all:
I've been watching the discussion on the list about procrastination with
a great deal of interest.
I've noticed a reluctance to join in until now (actually, I wondered if I
was procrastinating, LOL); but I've realised that I'm not really comfortable
with the word, or the concept because my experience suggests that there's more
to it than simple "procrastination".
I have found that what others (non-ADD) label procrastination may be several
other things from an ADHD perspective.
The alternative is that of "INERTIA". I seem to remember that ADHD's have
lots of problems with "changing focus" - mostly mornings, bedtimes, surprise
events, etc., etc..
I find that changing focus requires an enormous effort to drag my attention
"AWAY" from it's current activity, which I experience as being completely
different than 'procrastination'.
As I think about it, though, I have memories of resenting changes, even if
it's self-imposed. I interpret my reaction as being one of "Non-compliance" with
myself.
I suspect that without a great deal of emotional discipline, and
encouragement, that my lizard isn't interested in 'shoulds', 'houldn't's' etc.,
even if it originates within me.
Actually I think my lizard just gets really stubbornly "non-compliant" about
some things...interruptions, and changes are at the top of my lizard's list.
Getting my lizard to 'want' to cooperate is a major achievement (when it
works) that requires lots of 'reframing' my lizard's perceptions.
If I'm in a HALT (Hungry, Angry, Lonely, Tired, or Sick) reframing my
experiences is much more difficult than usual (and that's tough enough).
davadd
"Our purpose in life is to render clear what should have been blindingly
obvious!"
Life 101
You might not like www.egroups.com/groups/thelizardsrock , but it might get you
thinking!

Hi Barb,
At the time I had Prudential POS (it was owned by Aetna at that time,
but the policy was still written by Prudential.) It was a group,
through Raytheon, but Raytheon was not self-insured at the time.
I won the appeal because:
1- I was determined to win.
2- I had an independent SLP write a letter stating her opinion that FF
was concentrated receptive language training, much more efficient and
cost-effective than if a human supplied the therapy.
3- I had a reading/educational specialist write a letter stating that FF
was not a "reading program". This is the one thing the insurance
company will use to get out of paying.
4- I had the audiologist who tested my son for CAPD write a letter
recommending FF.
5- I supplied as many articles on the subject (that supported my view)
as I could find.
6- I video taped someone actually doing FF to show that it was sounds,
not words, and therefore not a "reading program".
7- I was able to show the results of my son's success in the program.
(This should not matter, but it does.)
There were 3 members on the panel. The person voting against me was the
rep from Prudential (big surprise, huh?) The independent SLP and the
"average objective" person voted for me. If you go to appeal, you
really want to know (in advance) who will be on the panel and then find
out everything you can about the panel members. You want that panel to
be fair.
Most (US) states have certain laws regulating appeals, and unfortunately
if your insurance does not fit into the state's protective laws, it
could be useless to appeal. You must also be very certain to find out
if your group insurance is really self-insured by the employer, but
administered by Aetna, United, BCBS, or the like....this changes all the
rules, and usually not in your favor. If you are in a self-insured (by
the employer) situation keep going up the Human Resources ladder
pleading your case. Sometimes they will waive exclusions (and pay) just
to get rid of you- be persistant and assertive, but not demanding or rude.

Hi NIDS folks,
I'm new to this list, have been reading through the archives and website, etc
and am gathering medical records and paperwork to send to Dr. Goldberg for my
son.
In the meantime, our current doctor is helping us update our testing and
we're thinking about adding some more viral testing -- maybe PCR method? --
while drawing blood. However, I noticed in some old e-mails, a mention that
Dr. Goldberg has said that low or no viral blood titers doesn't mean there is
no viral activity because the body could just not be trying to fight it
anymore. If this is true, does he usually order viral testing or just go
straight to the anti-virals if he feels symptoms warrant? Would we be
wasting our time and money running the tests?
Also, I'm having alot of trouble getting the neuroimmunedr website to come
up. Anyone else having trouble this week? or have any pointers for me? I'd
like to participate in the chat tonight but if I can't get the site up, I
won't be able to.
Gaylen

i don,t know about Winston Churchill, although I did a report on him once,
he was I believe, and some agree, Bi Polar, he had great periods of major
depression, which he called the Black Dog..On the other hand, it is my
understanding that Adolf Hitler was basically living on Amphetamines toward
the end, he was definetly overmedicated but then again what was his Doctor
going to say< no mien fuhrer? The best script he ever gave him was his last,
Cianide Capsules!
With Churchill, he was a fascinating character, he slept most of the day,
would get up for dinner, have some Brandy and Cigars, and Blueberry pie,
which he loved, and then would be a whirlwind of energy till dawn.
Ed

Michelle, how about hiring a coach? Not only could they help you stay
on task, they can help you sort out ways to improve your sales more than
you expected, as well as other things.
It well worth the money!
Jean

Our Senators (Schumer and Clinton) will probably be against the bill so we
will probably devote our time and attention to spreading the word to our
military population (who are residents of other states) and getting the issue
into the media. I have read nothing about it nor have I heard anything about
it on NPR. Anyone else have the same experience? Kathy NIDS-NNY

sounds like cocksackie. if it is, it will run it's course.

Hi all~
As far as active participation, I've been dormant on this help list for almost a
year now. I do browse the submittals periodically when I see a topic of
interest but to my knowledge haven't come across any suggestions about how to go
about finding someone (non-add, highly organized and non judgmental) who I can
pay to help me out by showing up once or twice a week for two or three hours a
day to help keep me organized in my home office. I'm in outside sales which I
love and excel at, but I have a home based office and am coming to the
conclusion (after almost two years) that I need to get some help. Other
companies that I worked for supplied me with support personnel because I worked
in an office environment (even then I'd stay in the office until after 2:00am
just to keep up), unfortunately- I'm finding that I'm actually LOSING leads
because of my lack of organization in working out of my home.
I would really appreciate any advise, suggestions and/or empathetic
commiserating. Thanks in advance for taking time out of your day to help me
out.
Michelle

Did anyone go to see Thom Hartmann's presentation at the ADDA 2000
conference?
A few of my friends (none of whom check references) said that he told
a story of Winston Churchill, who asked the equivalent of the surgeon
general if he could write him a script for the "stuff that was made
to keep fighter pilots awake"?
Where did this information come from? A recent biography of his?
Anyone know the book or article?
Thanks, Monica

Hi Suzi
I have to agree - I would never copy things from one
thing to another either. Right now I am using
"TurboNotes" a free "post-it note" program - on the
computer screen, so I only need to copy specific
addresses and phone numbers, and a few details
manually into the Electronic organiser, and the
master diary - for the "Records".
Suzi. will you be in Sydney this week? Is there
anyone else on the list in Sydney and interested in
meeting? I'll be down there to speak at a Forum on
"Changing Youth Driving Culture" on Thursday and
have time on Friday and Saturday before I fly out
mid afternoon.

there was just a message re. auditory processing but
no message came through. could you try again? barb

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

Hello,
I'm sorry, I have to disagree with the comments about Palm Pilots being
"bad" for ADD. It was on this very same list 6-10 months ago that people
were raving about Palm Pilots being good for ADD.
So finally when I went on a big overseas trip I bought a Casio version
electronic organiser duty-free in Singapore.
I have found it very helpful and for me personally copying the same list
manually day by day every day is a BAD thing. What would happen to me was I
would get frustrated looking at the less important things over and over so I
would just delete them or stop copying them onto the new list without ever
doing anything about them.
This way, things that are not essential to my very existence but
life-enriching can remain on my "to do" or "memo" list so I don't forget
about them altogether, which tends to happen when you have ADD. Then two
years down the track you remember them and you feel like a loser for not
ever working on that business plan, herb garden, short story, whatever.
Also, as people pointed out 6-10 months ago the personal organisers have an
alarm and you can set it to remind you to send Dad a birthday card etc, even
if you have to set it to go off three days in a row until you do it!
Just my humble opinion. Whatever works for you.
Cheers,
SUSI (Down Under)

Welcome...
To buy the video, go to the NIDS website (www.nids.net) and go down the home
page to the "NIDS Store".
Donna

what insurance do you have? independent or group?
good for you that you got fastforward paid. i never
dreamed they would pay but i will try next time
around. barb

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

I wouldn,t get too upset about the shedevil, it has been my experience in
the military and in academic regements that there are always those who will
get in your face and try to shake you out, there are courses designed to do
exactly that, like P Chem for Doctors etc., all you can do in a situation
like that , since she is holding your future in her delicate hands (claws),
is absorb it,then let it blow by you, roll yours eyes, name a rothweiler
after her, then consider the source and move on, I have managed to develope a
sense of humor about the slings and arrows of life, its a great way to vent
and deflect. I,ll leave the drug test question to our resident expert on the
subject, hang in there kid your doing fine!
Good Luck
Ed

I always make sure to give my son plenty of water in the hours preceding
the blood test. There is nothing worse than a technician having to
"dig" for a vein because your kid is not hydrated. I also use the same
two technicians every time because they are very good and they know what
we need.
Originally I had to bribe my son (the first few times) to let us do the
blood tests (without requiring the 4 adults to hold him down.) It also
took lots of discussion to prepare him for the tests. Now I only tell
him when his next test is and remind him when we are about to go. He
sits so nicely and is very proud of himself when we are done.
When we began Kutapressin injections I also used similar techniques. If
your child is old enough to understand, try to make sure they feel some
control over the situation if possible. I asked my son what time of day
and in what room would he like to receive his shots (but he knew without
a doubt that they were going to happen).
Good luck. I think it is really harder on the parents than the kid. No
one wants to see their "baby" scared or in pain. Just remember it
should become much easier in a very short time.
Stephanie

I highly recommend going through the Fast ForWord program if your child
is able.
http://www.scientificlearning.com/
My oldest had horrible CAPD, but we saw huge gains after Fast ForWord.
I got my medical insurance to pay for it after 6 months of badgering and
a very well prepared appeal, but it saved me $2,000. Please contact me
if you want more info.
Stephanie

Hi Davadd,
<This quote landed in my email this morning. I thought others might enjoy
it as well.
<"The way in which we think of ourselves has everything to do with how our
world
<sees us and how we can see ourselves successfully acknowledged by that
world."
-- Arlene Raven
A great quote - over here in the UK though, if that's my world, which I
suppose it is, for now, until I decide to move to Mars or Venus (which I
hear is fab in winter!) ......it makes for a jolly bumpy ride!
Take care
Sue
A few ADDish quotes I came across:
Procrastination means never having to say you're sorry!
It is not an optical illusion - it just looks that way!
A leading authority is someone who just guessed right!
If two wrongs don't make a right...try three!
Finally ..this one is for Ed ...."The problem with the gene pool is there is
no lifeguard!"

Please people we need more names especially for the following states below.
Thank you.
Vicki Lowery New York State

Do any of your children have sweaty hands and feet?? My son had this when he
was little and then it went away after starting with Dr. G and now it is
back....After switching from famvir to valtrex and back again, his hands/feet
are still sweaty and he just seems to be "warm all over" all the time and
often sleeps with no clothes on!
Also, do any of the children have delayed bone growth?? My son is 4 but he
looks 2 and they have found his bones are delayed by about a year!
I'd love to hear of other families with these issues and what the doctors
have said about them and if you've found any solutions to these issues!
Thanks everyone!
I hope I have not posted these questions before!!??
Kristina

Erin,
I hope it is okay that I post the answers to your questions to the list. They
were important questions to ask and I think the answers will help others who do
not know if they should go through the expense of going to Dr. G. This is the
most important thing you will ever do! I know there is another "CURE"every
week and you get tired of chasing them. I probably wouldn't have gone to see
Dr. G if we weren't already going there for Thanksgiving. But that would have
been the biggest mistake of my life. My kid wouldn't have made it without him
and ABA.
My son was in the same place as yours at age 5. He was verbal, but not
conversational. He talked only about the things he was interested in then like
elevators, wall plugs, computers, plug it in air fresheners, and street signs.
Because of his fixation on street signs, my son never wanted to take the
freeway. He wanted to know where everything street was. Although later, this
came in handy. I have no sense of direction and I just call Ryan. He can get
me anywhere, even places he has never been.
When he was young my son never gave me an indication one way or another that he
was ready for being toilet trained. Since I had another child, I just started
training him without waiting for the signs. He was three in a half and I woke
up one day and said, " I guess it is time for Ryan to learn to be
toilet-trained."
I did the same thing I did with my daughter. I put up a piece of construction
paper on the wall of the bathroom. I made a big deal out of picking out
stickers at the store. One kind of sticker was for "Pee Pee" and one for
"Poopie." We also picked out "big boy" underpants. (Although he didn't act
like he cared we still did this.) I stayed home for two days and put him in the
underpants (not pull-ups because our kids do not like being wet) and when I had
to go I would put him on the toilet too. My needs reminded me not to forget to
put him on the toilet.
We read books about "the potty" long before we ever started training. The first
time he used the toilet, we danced around the house, called Dad, and were
singing with delight this stupid song that our family always sings when
something great happens. Within two days, he was trained for daytime. I didn't
even attempt nighttime until he woke up dry. Then I yanked off the diaper and
put him on the toilet. If you wait for signs, it will never happen.
That is part of the problem with these kids. I never knew one way or another if
he was listening or understood a thing I said. I think parents sometimes stop
talking to their kids because they don't get an indication one way or another
that their child is listening. Don't make that common mistake.
The hardest thing I ever did was to keep talking to a kid that was unresponsive.
It wasn't until he was older that I realized he understood everything I said,
but didn't know how to respond or show me he was listening. Also be sure to
never talk negatively about him in front of your child. I will forward to you
some articles and the letters I used to get school services my son needed.
Hope this helps,
Marcia

Hello.
In reply to my post re. natural plant oil modulators. see:- www.moducare.com
page where it is described. We have been trying it for a few days, but
because our sons immune system seems so reactive, we have started on a very
small dose. We tip the powder from the capsule into his drink. One other
thing that was important for us was that on their web page,Moducar said that
their product is carried in a "ground rice" base. Our son has intolerance
problems with all "starchy carbs", but the manufacturer told me over the
phone that it is supplied in a "non-carbohydrate" base for sale in the UK.
The immune modulation effect has been shown ( according to the research ) to
come from the sterol / sterolins that are present naturally in the plant
pine oil.
Hope this helps. David Miles.

This quote landed in my email this morning. I thought others might enjoy it as
well.
davadd
July 21, 2000
"The way in which we think of ourselves has everything to do with how our world
sees us and how we can see ourselves successfully acknowledged by that world."
-- Arlene Raven
"Our purpose in life is to render clear what should have been blindingly
obvious!"
Life 101
You might not like www.egroups.com/groups/thelizardsrock , but it might get you
thinking!

What they need to do is to make the palm pilots with the NiCad batteries
that the laptop computers have. When I had my dear departed laptop,
it'd run for 3 hours straight on a charge, then start a blinking light
when it needed to be plugged in.
In fact, I can't think of a reason why they don't have that now! My new
Walkman recorder has it, and that's the size of a palm pilot!!! You can
even use it while it charging, just like the laptop did!
Mebbe the "normies" had a DUH! moment????
Jean

Are there cases of recovery where medication was eventually stopped and the
child's immune system continued to function properly? Children often outgrow
allergies and other problems. Or is continued medication a life-long
proposition for these kids?

In less things have changed... here in the states EMLA is by prescription...
Now, things change so fast that maybe they are over the counter but as of
last year I had to get a prescription. And many insurance companies don't
pay for it (mostly because there's no generic).
If someone here in the states needs some and can't afford it, let me know we
have a few tubes.
when you have a cancer kid, emla becomes your bestfriend. :0)
Lisa K.
"Sometimes you get shown the light in the strangest of places if you look at
it right"
Lisa,mom to -Justina 7 (nbII with oms 11/96 ADHD, bipolar like tendencies,
OCD and an absolute joy), Kelsey 10, and Travis 14. Wife to Jared
-<A HREF="http://www.pilink.com/page/stinaboleeena/"
Updates</A
{{{{{{{

Lisa is right, EMLA cream is a prescription drug in the US and many MD's
will write it for you to get blood work done. But a few pointers on it.
You need to have it on the skin at least 45 minutes to get it to numb the
skin, 60 minutes is better. And you can wrap the site with plastic wrap
from your kitchen drawer with a little tape and it pulls of easier than
Tegaderm. What works for us on our 4 year old son is practicing the entire
lab procedure on a doll (Bert from Sesame Street) and than practicing on our
son. First we started this a week prior to the first lab draw, now we just
refresh his memory with a few practice runs and we are O.K.. He sits in
our lap while the blood is being drawn and sings a song like the ABC song to
give him an idea when the lab draw will be over. Sometimes he sings it 2 or
3 times but he's still fine with that. Make sure you do both inner arms in
case they can't draw from one side. You can e-mail me at home if you have
any more questions about it. My husband uses it alot at work to start IV
lines on kids and I am also an RN.
While I'm writing, I would like to thank everyone on this list for their
great support and information - especially people who's kids have recovered
and could doing something else now.
Thanks,
Anne in Wisconsin
Message: 3
Date: Sun, 28 Jul 2002 19:36:50 EDT
From: LJKorenko@...
Subject: Re: Emla patch
In less things have changed... here in the states EMLA is by prescription...
Now, things change so fast that maybe they are over the counter but as of
last year I had to get a prescription. And many insurance companies don't
pay for it (mostly because there's no generic).
If someone here in the states needs some and can't afford it, let me know we
have a few tubes.
when you have a cancer kid, emla becomes your bestfriend. :0)
Lisa K.
"Sometimes you get shown the light in the strangest of places if you look at
it right"
Lisa,mom to -Justina 7 (nbII with oms 11/96 ADHD, bipolar like tendencies,
OCD and an absolute joy), Kelsey 10, and Travis 14. Wife to Jared

Sonya,
Any drugstore should have them.
Just ask at the pharmacy counter.
You can buy them as pre-made patches (about $10 for 2 here in Canada,
probably cheaper in US dollars) or you can buy emla cream in a tube
and then buy tegaderm patches and put them on over once you've
applied the cream (in effect making your own patch).
You just apply it in the general area where the needle will be stuck.
The pre-made patches are easier but if you're going to be going for
bloodwork every few weeks, it's cheaper to go with the tube and the
tegaderm.
Good luck.
Dave

Bev asked
<I'm very interested in hearing about how he helped you with
procrastination.
<Anything that would provide a little insight is helpful.
Hi Bev,
On recently participating on this CBT (Cognitive Behavioural Therapy)
course,
we were asked to practice on eachother and to "pick a problem that is fairly
simple but true". On the spur of the moment, I chose a 'mild' problem that
'I had always wanted to write'. I could never do it! This was pertinent at
the current time as I had been asked to write an article on depression for a
women's magazine and was writing a booklet for the association I help run
and
I was writing a play for .....too long to explain and not important.
This issue was mildly worrying me, especially for the fact that the
depression
article was already a day overdue. This course tutor absolutely took me to
pieces asking me questions that could have initiated a wrestling match! The
upshot was, that I was given homework for the whole group to witness and had
to
report on it the following day. I went through the whole process of "Huhhh!
just because I am being monitored - just see if I do" to "if I don't they
will
think I am a failure" from a rebel to a 'good' girl. I finally decided I
would
do it - for ME! I did, I was THEN given homework to write something,
anything
for half an hour a day, either in fits and starts or in one go. I have done
so
and continued to do so.
What actually happened was that he asked me the question "did I like
writing?".
I replied that I loved it, especially the play which had became an obsession
and
I was 'moved' by every word I wrote! (when in the mood). He told me that
was "CRAP!" He said that I loved it when I got into it but that I hated the
first 15 minutes. He said all writers hate the first 15 minutes and it is
called "Discomfort Anxiety".
I pooh poohed this for the first day but then 'allowed' myself to accept
this
as being correct. I do hate starting! I have given myself all sorts of
excuses
such as "I'm not in the mood", "I haven't had enough coffee yet", "It is not
quiet/noisy enough" etc. etc. So I would (what my husband calls) TRIXY!
This
trixying includes doing things I also hate (but hate less) and are so
trivial
and unimportant like removing a stain from the sitting room carpet or
removing
cob webs from the shed door! He asked me how I viewed this "trixying". I
replied that it was a waste of time. He asked me whether I would prefer to
'waste time' removing a stain from the carpet or writing something that was
not
'asolutely' perfect! I replied writing, of course....for me the penny
dropped!
I am, apparently, an ADDee perfectionist procrastinator! The perfectionist
in me deters me from creating as I think it will not be worth it! The
workaholic in me is fighting boredom and becoming a 'bum', the
procrastinator
is hiding behind the moralistic exterior! What a complex picture!
I have decided that I may allow myself the indulgence of writing, even if it
is CRAP! My crap may be just as good as other CRAP I have come across!
(present company, if you are still here, excluded!)
The idea is, I sincerely hope, that I will get into the habit of writing
this
half an hour a day and, eventually, the Discomfort Anxiety will lessen and
not cause me a problem.
Now, though.....you get over one hurdle and another leaps out at
you.....although
I may be doing the writing, I am still not quite believing it is not crap!
Now
I thought I would work on the self esteem issue to try to believe in myself
a
bit more. Either that, or .................go back to painting!
I hope this helps Bev, if you have any questions or want to try out what I
learned with a particular problem then by all means ask, I would be happy to
help, if I can.
Sue,

Have you tried putting an emla patch on his arm before going to the
lab. We do this with our son (we have to make sure he is wearing a
longsleeve shirt or he pulls it off) ... and then when the needle
goes in he doesn't even feel it. He stiff struggles like heck when
the process begins but there is no feeling from the needle itself ...
so he tends to remain "relatively" calm during the actual blood
drawing.
Dave

Does anyone know of a good lab to have blood drawn in the Pasadena
CA. area? My 2 1/2 year old son Aidan has a terrible time getting
blood drawn. It takes four people to hold him down and last time he
threw such a fit that his veins kept collapsing. It was awful. I
know I can't sedate him every six weeks, (although I wish I could!)
Does anyone have any suggestions?
Thanks
Sonya

--- In NIDS@y..., "Frank Hinds" <Hindssite@m...
i cannot get blue cross to pay for phone consults, how are ou coding
them?
understand how things work. After your initial visit, you only
occasionally have to travel to see him. In thirteen years, my son
has seen Dr. G three times. You can plan your family vacations to
Disney around these visits.
be done by fax and phone. I pay for the phone time and my insurance
company Blue Cross Blue Shield pays for the phone consult. On the
phone appointments we do the same thing that would happen in an
office visit. We discuss current bloodwork which is the scientific
means Dr. G uses to make health decisions for your child. We also
discuss the changes I have observed in behavior and functioning. The
only thing that is different from a regular doctor's visit is your
child is not in the room. Think about it, when y